Exploring The Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care

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Exploring the Experience of Moral Distress in

Multidisciplinary Teams Providing End-of-Life
Care
Layh, Janice
https://research.usc.edu.au/esploro/outputs/doctoral/Exploring-the-Experience-of-Moral-Distress/99533808902621/filesAndLinks?index=0
Layh, J. (2021). Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life
Care [University of the Sunshine Coast, Queensland]. https://doi.org/10.25907/00065
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EXPLORING THE EXPERIENCE OF MORAL
DISTRESS IN MULTIDISCIPLINARY TEAMS
PROVIDING END-OF-LIFE CARE
Janice Louise Layh

RN, RM, B. Health Sc. (Health Prom), Grad Cert Health
Management, Master of Adv. Nurs. Practice
Submitted in fulfilment of the requirements for the degree of
Doctor of Philosophy
School of Nursing, Midwifery and Paramedicine
University of the Sunshine Coast
Sippy Downs Drive, Sippy Downs, Queensland 4556
AUSTRALIA
December 2020
Keywords
allied health professional
case study research
clinical nurses
constructivism
empathy
end of life
haemodialysis
home dialysis
inpatient
medical professionals
moral distress
multidisciplinary team
nephrology
nurses
palliative care
peritoneal dialysis
registered nurses
semi-structured interviews
Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care i
Abstract
Background:
Moral distress is identified as a significant experience for health professionals in

clinical settings and has been widely explored; its existence is verified across extensive
research in acute care settings. The negative impacts of moral distress have highlighted
the detrimental outcomes for professionals, organisations, and patients. A narrative
review of the literature identified a large body of research examining moral distress in
individual health professionals. However, a gap in the literature exists in examining
moral distress in the context of multidisciplinary teams, and the ways in which these
teams influence the experience. The end-of-life care setting became a focus for this
research after it was highlighted as a time when moral distress arose frequently. These
deficits provide the question for this research.
What is the experience of moral distress in multidisciplinary teams providing end-of-

life care?
Research paradigm
Social constructivism provides the philosophical paradigm for this research,

which assumes meanings are many and varied and are negotiated through social
processes. Meanings exist in time, context, and social situations. The interpretive
approach engages the researcher within the research and encourages reflexivity to
interrogate how they shape the findings, analysis, and conclusions of the study. The
researcher’s social background and attitudes are exposed in the research by examining
their own views during data collection and analysis.
Research design
This research utilises a qualitative approach using an embedded multiple case

study design. Two multidisciplinary teams are identified for providing end-of-life care.
These multidisciplinary teams contain a range of health disciplines and were
purposively recruited. The teams comprise a renal team providing end-of-life care to
patients with end-stage renal disease, and a palliative care team providing palliative
care at the end of life.
ii Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care
The methods used in this research include semi-structured interviews, focus
groups and written reflections. The researcher’s personal reflections and field notes
are recorded during the data-collection and analysis phases. Literal and theoretical
replication enabled the achievement of the aims of a robust and valid case study design.
Findings
The findings of this research confirmed participants’ experience of moral

distress in decision making, communication within the multidisciplinary team,
professional perspectives of individual disciplines and, reflective practice and
professional supervision in the team providing end-of-life care to patients. Three
multidisciplinary team constructs emerged from the analysis of themes across the two
cases: 1) Professional experiences of moral distress and caring for self, 2) Professional
perspectives in delivering end-of-life care to patients, and 3) Professional approaches
to enabling and negotiating end-of-life care. These constructs contribute to the
experience of moral distress in multidisciplinary teams providing end-of-life care.
Discussion and conclusions
Moral distress remains an individual experience, but the context of working in a

multidisciplinary team providing end-of-life care can create situations which
contribute to the development of moral distress and ways in which professionals care
for themselves. Experience of moral distress in individual team members is examined
and the detrimental impact on health professionals at an individual level is confirmed.
The theory of empathy and moral development is examined and its relationship to the
experience of individual moral distress. Reflections by the researcher highlighted the
way in which empathy was constructed in the clinical setting and the impact of the
professional’s prosocial behaviour on their responses to moral distress experiences.
This research identified the way in which each of the professional groups in the
multidisciplinary team developed their own perspectives and approaches to end-of-life
care. Social Identity Theory and the extension of self-categorization provide a new
lens to understand why these differences exist within professional groups in
multidisciplinary teams. This theory provided a unique way to view these experiences
of moral distress which has not been previously explored in the literature. This
contributed to the novel findings in this research. This research confirmed the
Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care iii
existence of moral distress in end-of-life care and in the context of the
multidisciplinary team and validated the intricacies of this experience.
iv Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care
Table of Contents
Keywords .................................................................................................................................. i
Abstract .................................................................................................................................... ii
Table of Contents ...................................................................................................... v
List of Figures ......................................................................................................................... ix
List of Tables ............................................................................................................................x
List of Abbreviations .............................................................................................................. xi
Statement of Original Authorship .......................................................................................... xii
Acknowledgements ............................................................................................................... xiii
Chapter 1: Introduction ......................................................................................... 1
1.1 Background .....................................................................................................................1
1.2 Context of the Research, Purpose and Significance .......................................................1
1.3 Research Question ..........................................................................................................2
1.4 Defining Moral Distress .................................................................................................2
1.5 Defining End of Life and Multidisciplinary Teams........................................................4
1.6 The Researcher’s Perspective .........................................................................................5
1.7 Thesis Outline .................................................................................................................6
Chapter 2: Literature Review ............................................................................... 9
2.1 Introduction ....................................................................................................................9
2.2 Part One: A Narrative review .........................................................................................9
2.2.1 Method of Literature Selection...........................................................................10
2.2.2 Health Professionals Studied and Context..........................................................12
2.2.3 Quantitative Methods of Study...........................................................................13
2.2.4 Qualitative Methods of Study.............................................................................16
2.2.5 Factors Contributing to Moral Distress ..............................................................17
2.2.6 Physical, Emotional and Behavioural Responses to Moral Distress ..................22
2.2.7 Strategies to Mitigate Moral Distress .................................................................23
2.2.8 Interventions for Moral Distress.........................................................................24
2.2.9 Conclusion to the Narrative Review...................................................................25
2.3 Part Two: The Focused Review....................................................................................26
2.3.1 The Method of Literature Selection for the First Search ....................................27
2.3.2 The Method of Literature Selection for the Second Search ...............................28
2.3.3 Factors Related to Moral Distress in Teams.......................................................31
2.3.4 Strategies to Mitigate Moral Distress Within Teams .........................................35
2.3.5 Conclusion to the Focused Review ....................................................................38
2.4 Conclusion to Chapter Two ..........................................................................................39
Chapter 3: Research Design ................................................................................ 41
3.1 Introduction ..................................................................................................................41
3.2 Part One: Research Paradigm .......................................................................................42
3.3 Part Two: Theoretical Approach ..................................................................................44
3.3.1 Introduction ........................................................................................................44
3.3.2 The Development of the Theory.........................................................................45
Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care v
3.3.3 Early Moral Development ................................................................................. 46
3.3.4 Mature Moral Development............................................................................... 47
3.3.5 Conclusion to Part Two ..................................................................................... 50
3.4 Part Three: Methodological Design – Case Study ....................................................... 50
3.4.1 Introduction........................................................................................................ 50
3.4.2 Case Study Defined ........................................................................................... 51
3.4.3 Historical Development of Case Study .............................................................. 51
3.4.4 Defining the Case............................................................................................... 52
3.4.5 Single and Multiple Case Study Design ............................................................ 52
3.4.6 Holistic and Embedded Case Study Design....................................................... 53
3.4.7 Data Collection in Case Study Design ............................................................... 53
3.4.8 Data Analysis in Case Study Design ................................................................. 56
3.4.9 Triangulation and Credibility in Case Study Design ......................................... 57
3.4.10 Conclusion to Part Three ................................................................................... 57
3.5 Part Four: Case Description ......................................................................................... 58
3.5.1 Introduction........................................................................................................ 58
3.5.2 Identifying the Cases ......................................................................................... 58
3.5.3 Recruitment of Participants ............................................................................... 61
3.5.4 Data Collection .................................................................................................. 62
3.5.5 Data Management .............................................................................................. 64
3.5.6 Data Analysis ..................................................................................................... 65
3.5.7 Limitations ......................................................................................................... 67
3.5.8 Ethical Considerations ....................................................................................... 68
3.5.9 Conclusion to Part Four ..................................................................................... 69
3.6 Conclusion to Chapter Three ....................................................................................... 69
Chapter 4: Case One Findings ............................................................................. 71
4.1 Introduction .................................................................................................................. 71
4.2 Theme One: Moral Distress Emerging in EoL Decision Making ................................ 72
4.2.1 Introduction........................................................................................................ 72
4.2.2 EoL Decision Making and Uncertainty ............................................................. 73
4.2.3 EoL Decision Making and the Impact of Changing the Decision Pathway....... 74
4.2.4 EoL Decision Making and the Importance of Quality of Life ........................... 76
4.2.5 EoL Decision Making and Family Participation ............................................... 78
4.2.6 EoL Decision Making and Patient Autonomy ................................................... 85
4.2.7 EoL Decision Making and Withdrawal of Treatment........................................ 87
4.2.8 EoL Decision Making and Legal Responsibility ............................................... 89
4.2.9 Theme One Summary ........................................................................................ 91
4.3 Theme Two: Team Communication and the Contribution to Moral Distress in EoL
Care .............................................................................................................................. 92
4.3.1 Introduction........................................................................................................ 92
4.3.2 Enablers to Team Communication..................................................................... 92
4.3.3 Barriers to Team Communication...................................................................... 97
4.3.4 Theme Two Summary ..................................................................................... 103
4.4 Theme Three: The Moral Distress Experience – Reactions and Strategies ............... 104
4.4.1 Introduction...................................................................................................... 104
4.4.2 Defining Moral Distress................................................................................... 104
4.4.3 Emotional and Behavioural Responses to Moral Distress ............................... 105
4.4.4 Adaptive Strategies used for Moral Distress in EoL Care ............................... 107
4.4.5 Theme Three Summary ................................................................................... 111
4.5 Theme Four: Professional Perspectives Related to EoL and Moral Distress ............. 111
vi Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care
4.5.1 Introduction ......................................................................................................111
4.5.2 Allied Health Perspectives ...............................................................................111
4.5.3 Nursing Perspectives ........................................................................................113
4.5.4 Medical Perspectives ........................................................................................115
4.5.5 Theme Four Summary ......................................................................................117
4.6 Conclusion to Themes in Case One ............................................................................118
4.7 Personal Reflection on Case One................................................................................120
Chapter 5: Case Two Findings .......................................................................... 123
5.1 Introduction ................................................................................................................123
5.2 Theme One: Moral Distress Emerging in EoLDecision Making................................124
5.2.1 Introduction ......................................................................................................124
5.2.2 EoL Decision Making and the Impact of Changing the Decision Pathway .....124
5.2.3 EoL Decision Making and Family Participation ..............................................125
5.2.4 EoL Decision Making and Family Dynamics ..................................................126
5.2.5 EoL Decision Making and Patient Autonomy..................................................128
5.2.6 EoL Decision Making and Assisted Dying Request ........................................129
5.2.7 Theme One Summary .......................................................................................131
5.3 Theme Two: Team Communication and the Contribution to Moral Distress in EoL
Care 132
5.3.1 Introduction ......................................................................................................132
5.3.2 Enablers to Team Communication ...................................................................133
5.3.3 Barriers to Team Communication ....................................................................135
5.3.4 Theme Two Summary ......................................................................................140
5.4 Theme Three: The Moral Distress Experience – Reactions and Strategies ................141
5.4.1 Introduction ......................................................................................................141
5.4.2 Defining Moral Distress ...................................................................................141
5.4.3 Emotional and Behavioural Responses to Moral Distress................................143
5.4.4 Adaptive Strategies used for Moral Distress in EoL Care................................147
5.4.5 Theme Three Summary ....................................................................................150
5.5 Theme Four: Reflective Practice and Supervision .....................................................151
5.5.1 Introduction ......................................................................................................151
5.5.2 The Reflective Practice Group .........................................................................152
5.5.3 Professional Supervision ..................................................................................153
5.5.4 Theme Four Summary ......................................................................................155
5.6 Conclusion to Themes in Case Two ...........................................................................155
5.7 Personal Reflection on Case Two ...............................................................................156
Chapter 6: Discussion, Conclusions, and Recommendations ..................... 161
6.1 Introduction ................................................................................................................161
6.2 Cross-Case Analysis ...................................................................................................163
6.3 History of Social Identity Theory ...............................................................................164
6.3.1 Definition..........................................................................................................164
6.3.2 Membership of the Group ................................................................................165
6.3.3 Self-categorisation ............................................................................................166
6.3.4 Uncertainty .......................................................................................................166
6.3.5 Strengths and Limitations of Social Identity Theory and Self-
categorisation....................................................................................................167
6.3.6 Summary ..........................................................................................................167
6.4 Professional Exeriences of Moral Distress and Caring for Self .................................168
Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care vii
6.4.1 Introduction...................................................................................................... 168
6.4.2 Defining Moral Distress................................................................................... 168
6.4.3 Professional Experiences of Moral Distress .................................................... 169
6.4.4 Moral Distress and Empathy............................................................................ 170
6.4.5 Caring for Self in Moral Distress ..................................................................... 173
6.4.6 Summary .......................................................................................................... 176
6.5 Professional Perspectives in Delivering End-of-Life Care to Patients....................... 176
6.5.1 Introduction...................................................................................................... 176
6.5.2 Differing Perspectives of Delivering EoL Care ............................................... 177
6.5.3 Summary .......................................................................................................... 180
6.6 Professional Approaches to Enabling and Negotiating End-of-Life Care ................. 181
6.6.1 Introduction...................................................................................................... 181
6.6.2 Shared Decision Making .................................................................................. 181
6.6.3 Negotiation ...................................................................................................... 182
6.6.4 Exclusion ......................................................................................................... 183
6.6.5 Hierarchy ......................................................................................................... 184
6.6.6 Language and Labelling................................................................................... 184
6.6.7 Summary .......................................................................................................... 185
6.7 Conclusions from this Study ...................................................................................... 185
6.8 Strengths and Limitations .......................................................................................... 187
6.9 Recommendations ......................................................................................................188
References ............................................................................................................. 191
Appendices ............................................................................................................ 209
viii Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care
List of Figures
Figure 2.1 Flowchart of search strategy for narrative review. ................................... 12

Figure 2.2 The factors contributing to moral distress. ............................................... 17
Figure 2.3 Flowchart of first search strategy for focused review. ............................. 28
Figure 2.4 Flowchart of second search strategy for focused review. ......................... 29
Figure 2.5 Factors related to moral distress in teams. ................................................ 31
Figure 2.6 Strategies for coping with moral distress within teams. ........................... 36
Figure 3.1 Diagrammatic representation of the theory of empathy and moral
development (Adapted from Hoffman, 2000). ............................................ 45
Figure 3.2 Diagrammatic representation of this study (Adapted from Rosenberg
& Yates, 2007). ............................................................................................ 61
Figure 3.3 Embedded multiple case study design. ..................................................... 65
Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care ix
List of Tables
Table 3.1 Case One Participants ................................................................................ 59

Table 3.2 Case Two Participants ................................................................................ 60
x Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care
List of Abbreviations
ACSQH Australian Commission on Safety and Quality in Health Care
CPR cardiopulmonary resuscitation
E. coli Escherichia coli
EoL end of life
FG focus group
MDS Moral Distress Scale
MDS-R Moral Distress Scale-revised
MDT multidisciplinary team
NHMRC National Health and Medical Research Council
USC University of the Sunshine Coast
Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care xi
Statement of Original Authorship
The work contained in this thesis has not been previously submitted to meet
requirements for an award at this or any other higher education institution. To the best
of my knowledge and belief, the thesis contains no material previously published or
written by another person except where due reference is made.
Signature:
Date: 8/12/2020
xii Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care
Acknowledgements
First and foremost, I give my heartfelt thanks to Associate Professor Amanda

Henderson. We started this journey together and your unending support,
encouragement and direction has been the most valuable contribution one could ever
wish for in a PhD journey. Your gentle feedback and knowledge of this study has made
this possible, even when I was not sure it was. I am indebted to you for the quality of
this project and am forever grateful.
To Dr John Rosenberg who joined this journey when it was partly completed
and spent many hours coming to understand the study and provide insight and
feedback to this work, I sincerely thank you. Your guidance has been invaluable, and
you have encouraged me throughout the final stages to believe this thesis would be
completed.
I acknowledge Emeritus Professor Margaret Barnes, who also began this journey
with me and talked me into doing this thesis. You inspired me with your knowledge
and wisdom to pursue academia and to build another career path as a nurse and
midwife. You always supported the need for research and knowledge in our everyday
nursing practice. I am forever grateful for your sound advice and encouragement.
To my incredible and supportive colleagues and friends in the School of Nursing,

Midwifery and Paramedicine, I thank you for your continual support, encouragement
and enthusiasm during this project. To the other two amigos, Sam and Penny, I am
eternally grateful for the enormous support, reassurance and time for coffee.
To my husband, Chris, who made me endless drinks and snacks throughout this
journey and always supported this endeavour: I have you to thank for making it to the
end. You will always be a part of this achievement.
To my daughter, Jasmine, her husband, Andrew, and baby, Sophie, you provided
constant support throughout this project and brought joy into life as babies do.
To my sons Ben and Todd, their partners, other family, and all the grandchildren
who came along during this journey, you made my life fun. You messed up my office
regularly with drawings on my desk and articles which helped me to realise this project
Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care xiii
would not last forever. Seeing articles heading to the shredder was not meant to be a
part of this project.
Finally, to all the participants in this research, I thank you sincerely. You gave
your time and energy so this project could be completed. May this knowledge benefit
our clinical work of caring for people and their families at end of life.
I dedicate this thesis to my beloved parents who believed in the value of

education.
Statement of Editorial Assistance

The author obtained professional copyediting and proofreading services for this
thesis according to the guidelines laid out in Guidelines for editing research theses
(Institute of Professional Editors, 2019) and endorsed by the Australian Council of
Graduate Research. Thanks to Leigh Findlay for her expert assistance.
Statement of Commonwealth Assistance

The author obtained financial support for this thesis through the Australian
Government Research Training Program for tuition fees.
xiv Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care
Chapter 1: Introduction
1.1 BACKGROUND
The experience of moral distress in providing clinical care has been extensively
identified by health professionals, who have highlighted its significant impacts on
health professionals personally, professionally, and organisationally. The phenomenon
of moral distress was first evident in the nursing literature as challenging for nurses
providing care to patients and has been consistently investigated in critical care settings
(Chapter 2). The existing literature identifies the presence of moral distress in the end-
of-life (EoL) context as problematic for health professionals providing care. This
chapter outlines the context of this research and its purposes and significance, along
with the definitions relevant to this study. It provides the researcher’s background and
personal frame for this research. The final section includes an outline of the chapters
of the thesis.
1.2 CONTEXT OF THE RESEARCH, PURPOSE AND SIGNIFICANCE
Healthcare today is a highly complex and multifaceted environment which relies

on the coordination of competently qualified teams to deliver care. Specialisation in
healthcare is evident across the sector and the importance of collaborative and cohesive
teamwork should not be underestimated. The existing literature has extensively
investigated the individual experience of moral distress but has not fully considered
the development of this phenomenon in the context of the multidisciplinary team
(Chapter 2). While moral distress may remain an individual experience, the purpose
of this research was to identify the ways in which the multidisciplinary team setting
may contribute to this experience. This research contributes to the knowledge on moral
distress in the specific context of providing EoL care within the multidisciplinary team.
This intention led to the research question.
Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care 1
1.3 RESEARCH QUESTION
What is the experience of moral distress in multidisciplinary teams providing

end-of-life care?
1.4 DEFINING MORAL DISTRESS
To begin this research, it was important to define the concepts to be used and
investigate how these definitions are portrayed in the existing research. This begins
with the definition of moral distress and is followed by the definitions for end of life
(EoL) and multidisciplinary teams (MDTs).
Andrew Jameton’s definition of moral distress (1984, p. 6) has been consistently

used in the research. Jameton defines the construct as follows:
Moral distress arises when one knows the right thing to do, but institutional
constraints make it nearly impossible to pursue the right course of action.
This definition of moral distress has been the most widely cited across the
plethora of qualitative and quantitative research (Burston & Tuckett, 2012; Camp,
Jeon-Slaughter, Johnson, & Sadler, 2017; Corley, Minick, Elswick, & Jacobs, 2005;
Epstein, 2010; Henrich et al. 2016; Kalvemark, Hoglund, Hansson, Westerholm, &
Arnetz, 2003; Lamiani, Borghi, & Argentero, 2015; Pauly, Varcoe, & Storch, 2012;
Ramvi & Ueland, 2017; Repenshek, 2009; Thomas, Thammasitboon, Balmer, Roy, &
McCullough, 2016; Tigard, 2017; Young, Froggatt, & Brearley, 2017; Zuzelo, 2007).
With emerging critique of the original definition by Jameton (1984), moral distress has
been defined to clearly articulate the meaning of the term in other studies (Austin,
2012; Crane, Bayl-Smith, & Cartmill, 2013; Deady & McCarthy, 2010; Kalvemark et
al., 2003; Kalvemark Sporrong, Hoglund, & Arnetz, 2006; McClendon & Buckner,
2007; Mitton, Peacock, Storch, Smith, & Cornelissen, 2010; Nathaniel, 2004;
Wilkinson, 1987). Examples of moral distress experience have been used to facilitate
understanding of the term (Robichaux & Clark, 2006).
Several authors have argued that the original definition by Jameton is too
restrictive (Fourie, 2015; Johnstone & Hutchinson, 2013; Morley et al., 2017).
However, McCarthy and Monteverde (2018) argue for retaining the original definition
of this phenomenon because it supports the role of moral agency in decision making.
2 Exploring the Experience of Moral Distress in Multidisciplinary Teams Providing End-of-Life Care
Moral agency has been defined as “a moral awareness of moral problems and moral
responsibility for others” (Lutzen & Kvist, 2012, p. 13). Moral agency is viewed as
critical for healthcare professionals to navigate a complex healthcare environment
which is increasingly constrained (McCarthy & Monteverde, 2018). These constraints
include staffing shortages, staff skill mix deficiencies, increasing time pressure on
professionals and the need to maintain quality care in a financially constrained system
(McCarthy & Monteverde, 2018). These constraints can contribute to the experience
of moral distress, and moral agency is required to appreciate and understand these
constraints within the healthcare environment.
Morley, Ives, Bradbury-Jones, and Irvine (2017) identified 20 key definitions

across the moral-distress literature which have contributed to conceptual confusion
and complicated attempts to study this complex phenomenon. Embracing a single
definition has been argued as restrictive by some and as essential to the consistency of
the research process by others (Hamric, 2012; Lutzen & Kvist, 2012; Morley et al.,
2017; Tigard, 2017). Despite these definitional inconsistencies of moral distress, the
phenomenon has been widely investigated and continues to be of significant interest
in recent research across the health disciplines and in nursing (Burston & Tuckett,
2012; McAndrew, Leske, & Schroeter, 2016; McCarthy & Monteverde, 2018; Mehlis
et al., 2018; Morley et al., 2017; Mu et al., 2018; Prompahakul & Epstein, 2019).
The early research on moral distress which used the definition by Jameton (1984)
originated in North America (Corley, Elswick, Gorman, & Clor, 2001; Elpern, Covert,
& Kleinpell, 2005; Pauly et al., 2012). Research from the Scandinavian countries used
different terminology to describe what appears to be a similar concept, including
“moral stress”, “stress of conscience”, “troubled conscious” and “stress related moral
problem” (Glasberg et al., 2006; Lutzen & Kvist, 2012; Torjuul & Sorlie, 2006). More
recently, research has emerged from Iran (Asgari, Shafipour, Taraghi, & Yazdani-
Charati, 2017; Ghasemi, Negarandeh, & Janani, 2017) which uses the definitions of
Jameton and Wilkinson (1987).
The Australian literature on moral distress cites nurses do not associate with the
terminology of moral distress but they have clearly experienced it (Jensen, 2009; Neil,
2011). In a doctoral thesis, Neil (2011) examined the ethical journey of rural and
remote area nurses and metropolitan domiciliary nurses in Queensland, Australia, and
found coping with moral distress emerged as an important factor. This study used
definitions by Wilkinson (1987), and Schluter, Winch, Holzhauser, and Henderson
(2008), and highlighted that nurses did not identify their experience with the term
“moral distress”. Moral distress was a significant finding in a study of children’s
welfare workers in Australia, who described experiences of moral distress but again
did not articulate the term (Jensen, 2009).
In view of these outcomes, this research chose a definition for moral distress to
clearly articulate the concept to be explored. A definition by Nathaniel (2006) was
chosen because it embraces the aspects of moral distress which have been omitted in
the more limited definitions. Nathaniel created this definition from a synthesis of
seminal research (Jameton, 1984; Nathaniel, 2004; Wilkinson, 1987). Due to the
limited research to date on moral distress in Australian healthcare settings, and the
minimal use of the term moral distress by health professionals in Australia, the
definition needed to provide a comprehensive explanation of the term.
Moral distress is the pain or anguish affecting the mind, body or relationships in
response to a situation in which the person is aware of a moral problem,
acknowledges moral responsibility and makes a moral judgement about the
correct action; yet as a result of perceived constraints, participates, either by act
or omission, in a manner he or she perceives to be morally wrong (Nathaniel,
2006, p. 421).
1.5 DEFINING END OF LIFE AND MULTIDISCIPLINARY TEAMS
Equally, a lack of congruent definitions has complicated the definition of EoL.

Lamont (2005, p. 13) suggested EoL can be “thought of as the period preceding an
individual’s natural death from a process that is unlikely to be arrested by medical
care”. The Australian Commission on Safety and Quality in Health Care (ACSQHC,
2015, p.33) defines EoL as “the period when a patient is living with, and impaired by,
a fatal condition, even if the trajectory is ambiguous or unknown”. The Commission
notes this may be a period of years, or a relatively short period of time. EoL provided
a context for this research because it was identified as a time in which there are many
decision-making points within the care of patients that could potentially lead to moral-
distress situations for the health workers (Oberle & Hughes, 2001; Robichaux & Clark,
2006). The health literature consistently lacks clear definition of the term “end of life”
but assumes a common knowledge of its meaning.
The second part of the literature review, the focused review (Chapter 2)
highlighted the significance of investigating moral distress in the setting of a
multidisciplinary team (MDT). This term has also been defined for the purposes of this
research. MDTs can be defined as “two or more professionals from different
disciplines working together or co-existing alongside each other but separately from
each other” (Malin & Morrow, 2007, p. 449). The ACSQHC (2015) prefers the term
“interdisciplinary team”. This variation has fuelled ongoing debate in the literature, in
which the terms are defined differently but used interchangeably (McCallin, 2000).
The ACSQHC (2015, p. 20) defines interdisciplinary team as “a team of providers who
work together to develop and implement a plan of care”. Others prefer the term
“interprofessional collaboration”, defined as “healthcare professionals working
together as a team to provide care to patients” (Reed & Rishel, 2015, p. 243). The
different terms – multidisciplinary teams, interprofessional teams and interdisciplinary
teams – give rise to some confusion across the literature; different definitions, often
conflicting definitions, are used for the same term. This research used the term
“multidisciplinary team” because this term was commonly used by the teams included
in this study.
This discussion of the definitions highlights the lack of clarity which exists.
Thus, it was important for this research to clarify the terminology used. The definition
of moral distress was included on the participant information sheet to clearly define
the term for this study (Appendix D). In addition, this introduction exposes the
researcher’s perspective for this study, as part of the social constructivism paradigm
used for this research (Chapter 3).
1.6 THE RESEARCHER’S PERSPECTIVE
This research journey grew from an increasing frustration in my own clinical

nursing practice. My nursing and midwifery experience spans 40 years in acute
hospitals settings, and I have witnessed experiences of moral distress on a regular
basis. Decisions regarding patient care are made by members of the MDT. Nurses are
directed to enact these care decisions, even when they do not consider such care in the
best interests of the patient. This care includes treatments which may be considered
futile or unnecessary and may lead to ongoing patient suffering. One experience which
remains vivid is being asked to collect blood from a patient suffering advanced throat
cancer. This patient had arms which were battered and bruised from many attempts to
obtain blood samples and had become oedematous and painful. This patient was
clearly hours away from death and it seemed unnecessary and torturous to continue
with tests which would not change the outcome. I felt morally distressed by this
situation; this man clearly needed supportive palliative care at this time.
Experiences like this ignited my interest in this research. I had concerns about
the effects of these situations on nurses, other health professionals, patients and health
organisations. I have now identified this experience as moral distress, a term I was
unfamiliar with and, anecdotally, so were my nursing colleagues. I have regularly
encountered this experience and witnessed stories from my peers of similar events.
Many of these situations related to providing care to patients at EoL. I questioned my
ability to speak up in these situations when I felt the patient was harmed, and I
examined what prevented me from speaking up. This self-reflection became the
impetus for this study.
1.7 THESIS OUTLINE
This thesis comprises seven chapters which are outlined below.
Chapter 1: Introduction
This chapter identifies the background, context, purpose, significance, and

research question which enabled the development of this research. It defines the
critical terms for this research, including moral distress, EoL, and MDTs. It provides
an insight into the researcher’s own position and why this research was personally and
professionally relevant. An overview of the thesis provides the reader with clarity on
the structure and flow of the following chapters.
Chapter 2: Literature Review
Part One of the literature review was an extensive narrative review of the
literature surrounding the investigation of moral distress, focusing on studies which
included the EoL context. Empirical studies in moral distress focused consistently on
nursing and critical care settings. The EoL context emerged as a time in which moral
distress was experienced but not clearly identified. The investigation of this
phenomenon in other health professionals was consistently limited.
Part Two of the literature review focused on the experience of moral distress in
teams. This part provided clarity on the limited investigations of this phenomenon in
healthcare team settings, the factors contributing to moral distress in teams, and the
strategies used by health professionals to confront moral distress. Overall, this review
identified the need for further investigation of moral distress in this context of MDTs
providing EoL care.
Chapter 3: Research Design
This chapter begins with the research paradigm which underpins this study. A
constructivism approach was applied, and an interpretive lens allowed interaction
between the researcher and the researched. Constructivism assumes meanings are
negotiated through social processes and the interaction with others. Following this, the
Theory of Empathy and Moral Development is explored (Hoffman, 2000). This theory
provided a unique lens to examine the development of moral distress and its
relationship to empathy and moral behaviour.
This research used an embedded case study with two MDTs. The teams were a
renal team and a palliative care team. They were chosen purposely to meet the aims of
case study to provide literal and theoretical replication of the findings. The methods
used in this study are described in this chapter, including the selection of participants,
data collection and management, and analysis strategies. The limitations of this
research and the ethical considerations are examined.
Chapter 4: Case One Findings:
This chapter reports the findings from Case One, which was a renal team
providing care to patients with end-stage renal disease. This MDT managed both an
inpatient renal dialysis unit and outpatients treated at home. Four main themes were
identified in this MDT. The concluding part of this chapter presents the researcher’s
perspective on the process of collecting the data and details the insights gained in the
process of conducting interviews.
Chapter 5: Case Two Findings:
This chapter reports the findings from Case Two, which was an inpatient
palliative care unit and an integrated community team that provided support to patients
at EoL living at home. Four main themes were identified in this MDT. The conclusion
of this chapter also presents the researcher’s perspective on the data collection in this
team.
Chapter 6: Discussion, Conclusions and Recommendations
This chapter provides a discussion of the key outcomes of this research. Moral
distress was evidenced to impact the individual health professional providing EoL
care. Moral distress was found to emerge in clinical situations in which MDTs
function. Each professional group in the MDTs showed evidence of their social
identity and self-categorization, and its impact on experiences when providing EoL
care, professional perspectives, and professional approaches in enabling and
negotiating EoL care. The theory of social identity and its extension of self-
categorization were used as a lens to view these findings. Recommendations for
multidisciplinary research, practice and education arising from the findings in this
research could offer ways to address the professional differences that exist.
Chapter 2: Literature Review
2.1 INTRODUCTION
Part one of this literature review explores the construct of moral distress in end-
of-life (EoL) care through a narrative review of the contemporary empirical literature
and the seminal works which contribute to an understanding of this phenomenon. The
aims of this narrative review included an examination of how moral distress has been
studied historically and of the populations of interest. The use of the Moral Distress
Scale (MDS) and the revised version of this scale (MDS-R) are highlighted for their
contribution to significant investigation of this phenomenon. The contemporary
literature evidences the factors contributing to moral distress, individual coping
strategies to tackle this phenomenon, and interventions for moral distress. This review
critically identified a vast body of research focused on the individual experience of
moral distress and how this phenomenon has affected health professionals in their daily
clinical work.
Part two of this review, the focused review, sought specifically to examine moral
distress as it existed within the context of the healthcare team and how the team may
contribute to the experience. The context in which moral distress occurs cannot be
isolated from the experience. This part of the review identified a limited number of
studies which examined moral distress in the context of a team. This approach to the
second part of the literature review was taken after identifying an absence of literature
to support exploring moral distress in the EoL context, including the multidisciplinary
healthcare team. Both the narrative review and the focused review identified gaps in
the contemporary literature in the research of this phenomenon in the context of a
MDT.
2.2 PART ONE: A NARRATIVE REVIEW
The purpose of a narrative review aims to highlight what has been researched to
identify gaps and generally covers research that is easily accessed (Pare, Trudel, Jaana,
& Kitsiou, 2014). The objective of this narrative review was to identify contemporary
empirical literature on moral distress in health professionals and the EoL context. This
part of the review comprises
• method of literature selection
• health professionals studied and context
• quantitative methods of study
• qualitative methods of study
• factors contributing to moral distress
• physical, emotional, and behavioural responses to moral distress
• strategies to address moral distress
• interventions for moral distress
• conclusion to the narrative review.
This discussion is followed by part two of the literature review, the focused
review.
2.2.1 Method of Literature Selection

The initial literature search was conducted in 2013. The research literature was
retrieved from 2001 to 2013 and was further expanded through search alerts. In 2019
a further search was conducted to include current literature published from 2013 to
2019. Seminal literature was identified across the research period from 2001 to 2019
through reference lists and was included when it provided further context on moral
distress. Sources used were then examined for other significant works, which were
then reviewed. The literature on moral distress is vast; this publication period was
chosen to limit the review to the recent critiques and contemporary empirical research.
The databases were searched in both 2013 and 2019 and the dates of literature
updated. The databases searched were Cumulative Index to Nursing and Allied Health
(CINAHL) 2001–2019; PubMed 2001–2019; ProQuest Health and Medical Complete
2001–2019; Web of Knowledge 200–2019, Cochrane Review 2001–2019; Joanna
Briggs 2000–2019; SCOPUS 2001–2019, TRIP 2001–2019; Informit 2001–2019;
Health Source (EBSCO) 2000–2019 and Nursing and Allied Health (ProQuest) 2001–
2019. Each database was searched with the following search terms: “moral distress”,
“moral stress”, “stress of conscience”, “troubled conscious” and “stress related moral
problem” and “end-of-life”, “end of life care”, “palliative*”, “care of dying”, “end of
life decision making”. A combination of text terms was identified to encompass a
broad range of health professionals and disciplines, including nursing, medicine,
pharmacists, allied health practitioners and other healthcare workers in both the title
and abstract. Online search alerts were established to include further research in
CINAHL, Web of Science and Scopus. Articles were limited to those written in
English and included doctoral dissertations. Articles were limited to those peer-
reviewed, where this was enabled in the database. Further reference lists were
reviewed for other studies on moral distress, which were then included. There were
155 articles originally identified in 2013 from these searches. A further 51 were
included after further searches. Of these, 75 were duplicates and were excluded from
the review. The remaining 131 articles were reviewed, and 35 articles were excluded.
The excluded articles included those on euthanasia, advanced health directives,
palliative sedation, and reports of single clinical cases. After a further review of the 96
remaining articles, another 6 studies were excluded as not relevant to this study. The
final number of studies included in this narrative review was 90 studies. The flow chart
in Figure 2.1 illustrates the search strategy.
Figure 2.1 Flowchart of search strategy for narrative review.
2.2.2 Health Professionals Studied and Context

This review identified that most studies on moral distress included nurses as the
main participants (Asgari et al., 2017; Browning, 2013; Corley et al., 2005; Choe,
Kang, & Park, 2015; Davis, Schrader, & Belcheir, 2012; Ghasemi et al., 2017;
Langley, Kisorio, & Schmollgruber, 2015; Lawrence, 2011; McAndrew et al., 2016;
Mitton et al., 2010; Mobley, Rady, Verheijde, Patel, & Larson, 2007; Mu et al., 2019;
Pauly et al., 2012; Piers et al., 2011; Radzvin, 2011; Ramvi & Ueland, 2017; Rice,
Rady, Hamrick, Verheijde, & Pendergast, 2008; Silen, Svantesson, Kjellstrom,
Sidenvall, & Christensson, 2011; Zuzelo, 2007). Studies including other health
professionals began to emerge more recently: pharmacists (Astbury & Gallagher,
2016), physicians (Dzeng et al., 2015; Lievrouw et al., 2016; Ulrich, Hamric, & Grady,
2010), medical students (Camp et al., 2017; Thurn & Anneser, 2019) and physical
therapists (Houston et al., 2013). These studies of other health professionals identified
issues in common with the nursing research, including the factors contributing to moral
distress, emotional and behavioural responses to moral distress, and coping strategies
to deal with moral distress. Nurses were initially considered most exposed to moral
distress due to their proximity to the patient, but it is now recognised practitioners in
all health disciplines are exposed to moral distress (Camp et al., 2017; Dzeng et al.,
2015; Lamiani et al., 2017; Mehlis et al., 2018). Although limited moral distress
studies have included other health professionals in the population of study, the
multidisciplinary context has not been well explored (McAndrew et al., 2016).
The moral-distress literature is considerable in the area of critical care, which

comprises intensive care, emergency and neurology units (Cronqvist, Theorell, Burns,
& Lutzen, 2004; Elpern et al., 2005; Kilcoyne & Dowling, 2007; Meltzer & Huckabay,
2004; Mobley et al., 2007; Robichaux & Clark, 2006; Silen et al., 2011; Wiegand &
Funk, 2012; Zuzelo, 2007). These studies supported the proposal that moral distress
can arise when addressing EoL issues across settings. A recent review in the critical
care setting identified that moral distress issues are specific to the context and patient
population in which they occur (McAndrew et al., 2016). Morley et al. (2017)
concluded that understanding moral distress and its context was necessary to address
the phenomenon. The limited evidence of focused, qualitative research in the specific
EoL context emerged as an important area for further research (Dzeng et al., 2015;
Flannery, Ramjan, & Peters, 2015; Fridh, 2014; Gallagher et al., 2014; Young et al.,
2017; Zaal-Schuller, Willems, Ewals, van Goudoever, & de Vos, 2018). This narrative
review identified that moral distress in the EoL context was mainly explored in
research in critical care settings.
2.2.3 Quantitative Methods of Study

Moral distress has been researched with a range of methodologies using both
quantitative and qualitative approaches. Within the quantitative studies, the Moral
Distress Scale (MDS) (Corley, 1995) and the revised version of the scale (MDS-R)
(Hamric, Borchers & Epstein, 2012) are the most widely cited tools since their
development (Asgari et al., 2017; Browning, 2013; Corley, 1995; Corley et al., 2001;
De Villers & DeVon, 2012; Johnson-Coyle et al., 2016; Lazzarin, Biondi & Di Mauro,
2012; Range & Rotherham, 2010; Rice et al., 2008; Silen et al., 2011; Whitehead,
Herbertson, Hamric, Epstein, & Fisher, 2015; Wilson, Goettemoeller, Bevan, &
McCord, 2013; Woods, Rodgers, Towers, & La Grow, 2014; Zuzelo, 2007). The
following discussion of this major tool provides an understanding of the research
history on moral distress.
Mary Corley (1995) originally designed the MDS as a 32-item questionnaire

using a Likert scale to measure the nurses’ perceptions of the frequency and intensity
of moral distress. This tool was further modified and evaluated to include items
covering pain management, incompetent healthcare personnel, and managed care
(Corley et al., 2005). Silen et al. (2011) identified the MDS needed to be modified for
the Swedish environment because some of the questions appeared irrelevant in that
context. In Sweden, some nursing practices had changed, and Silen et al. (2011),
considered the scale more suited to the North American nursing context in which it
was designed. The MDS has been further revised for a variety of settings, contexts and
languages and is known as the MDS-revised (Fernandez & Moreira, 2013; Hamric et
al., 2012; Kleinknecht-Dolf et al., 2015; Lazzarin et al., 2012; Leggett, Wasson,
Sinacore, & Gamelli, 2013; Pauly et al., 2012; Whitehead et al., 2015; Woods et al.,
2014; Zuzelo, 2007). Questions have been redesigned to suit the study participants,
including the removal of sexist language (Range & Rotherham, 2010). A paediatric
version of this scale has been used to measure moral distress in nurses in paediatric
oncology and haematology (Lazzarin et al., 2012).
The MDS originally designed by Corley (1995) has been widely validated and
the reliability assessed (Browning et al., 2013; Corley, Elswick, Gorman & Clor, 2001;
McAndrew, Leske & Garcia, 2011; Molezam et al., 2013). Ongoing studies as recent
as 2019 have confirmed the validity and reliability of the MDS-R (Nia, Shafipour,
Allen, Heidari, Yazdani-Charati & Zareiyan, 2019). Research in the Australian context
confirmed the MDS-R in an amended for was found to be reliable (Burston et al.,
2017). This was assessed using Cronbach’s alpha and construct validity was
determined using exploratory factor analysis. Soleimani et al., (2019) also support the
validity and reliability of the tool.
The MDS and MDS-R have been used in many studies and with many
participants, which has enabled data collection from a broad range of nurses and health
professionals from diverse backgrounds. The wide use of these scales has validated
the presence of moral distress in the health professions and its frequency and intensity.
A recent literature review of 42 nursing studies identified the use of the MDS and
MDS-R in 21 of these studies (McAndrew et al., 2016). This literature identifies that
the MDS and MDS-R were designed to assess the frequency and intensity of moral
distress in nurses, who have been the predominant focus of moral-distress research.
The significance of the MDS and the MDS-R for this research is their inclusion
of multiple statements specific to the EoL context. Samples of these statements are:
• Follow the family’s wishes to continue life support even though it is not in
the best interest of the patient.
• Initiate extensive life-saving actions which prolong death.
• Follow the family’s or physician’s request not to discuss death with a dying
patient who asks about death.
• Provide surgery for terminally ill patients.
• Follow a physician order not to discuss the code status with a patient.
• Physicians practising on patients after failed CPR [cardiopulmonary

resuscitation].
• Continue to participate in care for a hopelessly injured person who is being

sustained on a ventilator when no-one will make decisions (Corley et al.,
2001, p. 254).
Statements concerning EoL in the MDS and MDS-R surveys consistently rate
highly both as factors contributing to moral distress and as causing high-intensity
moral distress (Asgari et al., 2017; Browning, 2013; De Villers & DeVon, 2012;
Elpern et al., 2005; Larsen, Dryden-Palmer, Gibbons, & Parshuram, et al., 2017;
Mobley et al., 2007; Rice et al., 2008). Corley et al. (2001) advocated for the revisions
of the tool and no longer recommends the use of the original tool due to its length and
its nursing focus (Hamric et al., 2012). However, use of both the MDS and the MDS-
R dominates the moral-distress literature, and both continue to be used in research
(Asgari et al., 2017; Browning, 2013; Johnson-Coyle et al., 2016; Karanikola et al.,
2014; Lamiani et al., 2015; Pauly, Varcoe, Storch, & Newton, et al., 2009; Sauerland,
Marotta, Peinemann, Berndt, & Robichaux, et al., 2014; Thurn & Anneser, 2019;
Wilson et al., 2013; Woods et al., 2014). Recent critique of these tools has highlighted
their lack of internal consistency (Morley et al., 2017).
The MDS and MDS-R have also been combined with other survey tools.
Corley’s MDS was combined with Olson’s Hospital Ethical Climate Survey to
compare the ethical climate of the workplace with the occurrence of moral distress
(Asgari et al., 2017; Pauly et al., 2009; Sauerland et al., 2014; Silen et al., 2011;
Varcoe, Pauly, Webster, & Storch, 2012; Whitehead et al., 2015). These studies
identified the importance of the context in which moral distress is experienced and
how the ethical climate of an organisation can influence the moral-distress experience.
Other survey tools have been used in research on moral distress, but the MDS and the
MDS-R predominate and have contributed significantly to study of this phenomenon,
identifying both the frequency and the intensity of moral distress.
Although studies using quantitative methods and the MDS and MDS-R have
provided considerable data on moral distress, these tools were created by nurses for
assessing nurses’ moral distress, and the frequency and intensity of their moral
distress. The findings from these studies highlight the existence of moral distress but
fail to elaborate on the broader contextual issues, including the impact of the clinical
circumstances in which moral distress can develop.
2.2.4 Qualitative Methods of Study

The qualitative methods used to examine moral distress include interviews, case
studies, focus groups and written narratives. The methods have been chosen according
to their suitability for the population being studied and the research aims of the study.
The interview method has been used in structured, semi-structured and unstructured
formats across the reviewed literature (Choe et al., 2015; Dzeng et al., 2015; Epstein,
2010; Fortney & Steward, 2017; Robichaux & Clark, 2006; Young et al., 2017). Many
of these qualitative studies include rich narratives which give depth and meaning to
the experiences of moral distress, its causes, effects and the coping mechanisms used
to address this phenomenon (Choe et al., 2015; Epstein, 2010; Ferrell, 2006; Maluwa,
Andre, Ndebele, & Chilemba, et al., 2012; Robichaux & Clark, 2006; Young et al.,
2017). A limitation of the qualitative research on moral distress using interview
methods is the difficulty in transferring results to other studies (Choe et al., 2015;
Robichaux & Clark, 2006). Studies located in a specific geographical area and with
small numbers of participants affect the transferability of results to other settings and
locations (Ferrell, 2006; Robichaux & Clark, 2006; Young et al., 2017). Nevertheless,
the qualitative research has provided rich detail on moral distress and the factors which
contribute to this phenomenon.
Focus groups have included nurses (Ramvi & Ueland, 2017) and other
professionals, including pharmacists (Kalvemark et al., 2003), and health managers
(Mitton et al., 2010). Focus groups are useful for collecting information when time is
restricted (Mitton et al., 2010; Ramvi & Ueland, 2017). One limitation of this method
is that hierarchy and group dynamics may prevent everyone from speaking up
(Kalvemark et al., 2003). Written narratives have been used in other studies on moral
distress (Camp et al., 2017; Ferrell, 2006; Lewis, 2017). Ferrell (2006) analysed
written narratives by nurses to gain an understanding of how they experienced moral
distress in situations of medically futile care while Lewis (2017) examined the coping
methods for moral distress. Qualitative methods were preferred when rich narratives
were needed to explain the experiences of moral distress and its impacts and effects.
2.2.5 Factors Contributing to Moral Distress

The literature identifies key factors that contribute to moral distress. These can
be broadly categorised into three themes (Figure 2.2): organisational issues,
professional issues, and patient care and goals of care. Each of these will now be
discussed.
•Unsafe staffing, staff shortages and workload.

Organisational •Institutional constraints: lack of resources, lack of
Issues equipment, overcrowding, cost containment and access
block.
Professional •Staff competency.

Issues
Patient Care •Quality of care.

and Goals of •Unnecessary tests and treatment on terminal patients
and prolonged suffering, too much care at EoL.
Care •Decision making and conflict in decision making.
Figure 2.2 The factors contributing to moral distress.
2.2.5.1 Organisational Issues
Unsafe staffing, staffing shortages and workload
Unsafe staffing, staffing shortages and high workloads are identified as factors
contributing to moral distress (Choe et al., 2015; Corley et al., 2005; Gjerberg, Forde,
Pedersen, & Bollig, 2010; Langley et al., 2015; Maluwa et al., 2012; Mobley et al.,
2007; Nathaniel, 2006; Pauly et al., 2012; Rice et al., 2008; Silen et al., 2011;
Trotochaud, Coleman, Krawiecki, & McCracken, 2015; Zuzelo, 2007). The
quantitative studies using the MDS identify unsafe staffing as one of the causes of
moral distress that occurs frequently and causes high-intensity distress (Corley et al.,
2005; Fernandez & Moreira, 2013; Pauly et al., 2009; Silen et al., 2011). In the study
by Choe et al. (2015), unsafe staffing was related to the inability to provide
comprehensive care and led to nurses feeling powerless and resentful. Other studies of
nurses, social workers, occupational therapists, pharmacists and medical professionals
identified moral distress from staffing and workload issues that prevented them from
doing the job properly and led to poor quality of care (Brazil, Kassalainen, Ploeg, &
Marshall, 2010; Choe et al., 2015; Gjerberg et al., 2010; Kalvemark Sporrong et al.,
2006; Park, Jeon, Hong, & Cho, 2014; Silen et al., 2011). Gjerberg et al. (2010)
surveyed over 600 nurses working in nursing homes. Results confirmed workload and
staffing issues contributed to moral distress and poor quality of care for patients at
EoL. Thus, unsafe staffing and high workloads affected the ability of health
professionals to provide what they believed was adequate and quality care to patients.
Institutional constraints
A range of institutional constraints, including restricted staffing, a lack of
resources and equipment, overcrowding, administrative tasks taking time away from
patient care, and cost containment contribute to moral distress (Choe et al., 2015;
Eizenberg, Desivilya, & Hirschfeld, 2009; Kilcoyne & Dowling, 2007; Langley et al.,
2015; Maluwa et al., 2012; Mitton et al., 2010; Woods et al., 2014). The study by
Maluwa et al. (2012) identified poor equipment and resources contributed to moral
distress when nurses were unable to supply basic care, including blood transfusions.
Choe et al. (2015) claimed economic benefits to the hospital were prioritised over
patient care. Overcrowding and access block in emergency departments caused
patients at EoL to have to wait in corridors and be treated in what nurses perceived as
inappropriate environments (Kilcoyne & Dowling, 2007). The time taken for
administrative tasks caused distress when patient care was compromised (Choe et al.,
2015). Woods et al. (2014) identified that nurses wanted to resign due to the pressure
of high-acuity patients without the resources needed to provide appropriate care. These
intuitional constraints contributed to perceived unsafe environments for patient care
and to development of moral distress.
2.2.5.2 Professional Issues

Competency of staff
Moral distress arose in situations where health practitioners identified working
with incompetent staff, including physicians, nurses and unregulated health workers
(Asgari et al., 2017; Deady & McCarthy, 2010; Ghasemi et al., 2017; Langley et al.,
2015; Mobley et al., 2007; Pauly et al., 2012; Rice et al., 2008; Silen et al., 2011).
Quantitative studies which used the MDS and MDS-R reported high responses to the
statement “working with physicians who they did not feel were as competent as the
patient care required” (Ghasemi et al., 2017; Pauly et al., 2012; Rice et al., 2008; Silen
et al., 2011). Langley et al. (2015) identified intensive-care nurses who experienced
moral distress when there was a lack of qualified nurses to oversee patients in the unit.
Nurses identified their own lack of competency in caring for patients (Ghasemi et al.,
2017). Further, professionally qualified health workers identified moral distress when
care to palliative patients was not provided by competent staff, which included
untrained caregivers and family (Brazil et al., 2010).
2.2.5.3 Patient Care and Goals of Care

Quality of care
Quality of patient care was a factor contributing to moral distress when
practitioners perceived the care as below best practice and professional standards
(Brazil et al., 2010; Deady & McCarthy, 2010; Dzeng et al., 2015; Langley et al., 2015;
Mu et al., 2018; Pauly et al., 2009). In the literature, quality of care is interrelated with
other causes of moral distress such as futile care or institutional constraints because
these factors all affect quality of care (Bader & Herschkopf, 2018; Thurn & Anneser,
2019). Brazil et al. (2010) identified informal caregivers as providing poor care to
patients, including abuse and neglect of patients cared for at home which contributed
to moral distress for healthcare practitioners. Quality of care was also linked to
physician practice in several studies (Camp et al., 2017; Deady & McCarthy, 2010;
Dzeng et al., 2015; Langley et al., 2015; Pauly et al., 2012; Rice et al., 2008, Thurn &
Anneser, 2019). Moral distress occurred when patients experiencing pain and suffering
were denied adequate pain relief (Rice et al., 2008; Thurn & Anneser, 2019). In
summary, while poor quality of care was identified as contributing to moral distress,
the literature contains little evidence of the way in which health professionals could
remedy these issues through communication with the healthcare team.
Unnecessary tests and treatments and futile treatment

A major theme identified in the review found moral distress originated from the
performance of unnecessary tests and treatments and the carrying out of what was
perceived as futile treatments (Asgari et al., 2017; Borhani, Mohammadi, &
Roshanzedeh, 2015; Cronqvist et al., 2004; Dzeng et al., 2015; Epstein, 2008; Ferrell,
2006; Gjerberg et al., 2010; Johnson-Coyle et al., 2016; Langley et al., 2015; Mobley
et al., 2007; Mu et al., 2018; Pauly et al., 2012; Rice et al., 2008; Robichaux & Clark,
2006; Silen et al., 2011; Thurn & Anneser, 2019; Torjuul, Elstad, & Sorlie, 2007;
Wiegand & Funk, 2012; Wilkinson, 1987; Zuzelo, 2007). Using the MDS, Silen et al.
(2011) found almost half of the 249 nurse participants indicated moral distress from
carrying out physician’s orders for unnecessary tests and treatment, especially on
terminally ill patients. Several other studies using the MDS and MDS-R agree with
these findings (Asgari et al., 2017; Johnson-Coyle et al., 2016; Rice et al., 2008). While
these studies provided support for the frequency of moral distress in carrying out what
was perceived as futile care, they could not provide any information on team
discussion and whether the goals of care were debated among the professionals caring
for the patient.
In a qualitative study using narrative analysis, Ferrell (2006) identified futile

treatment could deny palliative care and this was the most common contributing factor
for moral distress in almost half of the 108 nurse participants. This qualitative research
provided a depth of analysis of the issues which the quantitative studies could not
provide. Four responses in this study acknowledge team conflict in the provision of
aggressive treatment (Ferrell, 2006). In conclusion, the debate on unnecessary tests
and treatments and futile treatments was consistently reported as contributing to moral
distress for health practitioners. What was not identified in this literature was whether
team communication and collaboration had occurred when decisions were made
regarding what the health practitioners perceived as unnecessary and futile treatments.
Decision making in EoL care
Providing EoL care is a time in which decision making is critically important to
ensure quality of care to patients and timely decisions which support patients, families,
and health professionals. Differing opinions on prognosis and the timing of decisions
were highlighted as complicating decision making (McMillen, 2007; Mu et al., 2018).
Whitehead et al. (2015) identified that a lack of decision making in EoL care and poor
team communication contributed to moral distress in multidisciplinary health
professionals in both ward and critical-care units. This quantitative study did not
specifically address EoL but used a revised MDS and Olsen’s Ethical Climate Survey,
which includes questions specific to the EoL context. An association between moral
distress in the EoL context and team communication was a finding in this study
(Whitehead et al., 2015).
Several studies found nurses were excluded from EoL decision making, which
contributed to their experience of moral distress (Flannery et al., 2015; Mehlis et al.,
2018; McMillen, 2007). Nurses felt they should be included in decision making
because they had spent time with the patient and family and understood their
perspectives (Gallagher et al., 2014; McMillen, 2007; Zaal-Schuller et al., 2018).
Gallagher et al. (2014) reviewed nursing engagement in EoL decision making across
international settings and found nurses varied in their ability to influence decisions and
be included in decision making. In another study, nurses felt they acted as “mediators”
in decision making between the family and the physician (Zaal-Schuller et al., 2018).
Conflict in decision making between health professionals, the family, carers, and
relatives of patients contributes to moral distress (Badger, 2005; Ferrell, 2006;
Gjerberg et al., 2010; Mobley et al., 2007; Oberle & Hughes, 2001; Rice et al., 2008;
Robichaux & Clark, 2006; Whitehead et al., 2015; Zuzelo, 2007). Nurses have
experienced distress when what they believe is in the patient’s best interest conflicts
with the family’s desires for their relative. In a study of 592 multidisciplinary
clinicians, Whitehead et al. (2015) found the family wishes to continue life support
contributed to moral distress. Zuzelo (2007) identified nurses felt family wishes to
continue life support prolonged the patient’s death and suffering; nurses felt medical
staff should exert some control over the decision making so patient suffering was not
extended. This study was limited to nurses and did not identify the medical
perspectives of these issues and what may have influenced their decision making in
these circumstances. In summary, evidence confirmed conflict in decision making
contributed to moral distress for health professionals. However, the literature was
silent on team inclusion in EoL decision making and the communication among
members of the health team.
This review of contributing factors to moral distress highlighted important points

for further consideration:
• The factors contributing to moral distress have been well identified

throughout the literature. Further, the frequency and intensity of some of the
contributing factors have been well measured by the quantitative use of the
MDS and MDS-R.
• The quantitative literature could not provide insights into the team
interactions that occurred when care was contested among professionals, for
example, the provision of futile care and decision making at EoL.
• The dominance of nursing in the research reviewed consistently excluded the

views of other professionals or limited their inclusion.
• The qualitative research gave depth and understanding of the factors

contributing to moral distress and provided some insight into
multidisciplinary perspectives of this phenomenon.
• Limited literature highlights MDT factors as important in decision making

and as contributing to moral distress, but these are not well explored.
This narrative review of the literature identified the many factors contributing to
moral distress. A discussion follows on the effects of this phenomenon, the strategies
proposed to mitigate moral distress, and the interventions described in these studies.
2.2.6 Physical, Emotional and Behavioural Responses to Moral Distress

The review identified physical, emotional, and behavioural responses to this
phenomenon. The physical symptoms reported included headaches, muscle tension,
vomiting, depression, restless sleep, loss of sleep, loss of appetite, nightmares and
palpitations (Deady & McCarthy, 2010; Elpern et al., 2005; Ferrell, 2006; Maluwa et
al., 2012; Robichaux & Clark, 2006; Silen, Svantesson, & Ahlstrom, 2008). Emotional
responses to moral distress include frustration, anger, guilt, powerlessness and feeling
demoralised (Deady & McCarthy, 2010; Dzeng et al., 2015; Elpern et al., 2005;
Ferrell, 2006; Radzvin, 2011; Silen et al., 2008). Lee and Dupree (2008) conducted
interviews with 29 nurses, doctors and support workers who cared for dying children,
and reported that emotional responses of physicians were different from those of other
health practitioners. It is unclear how they differed, but physicians reported frustration,
sadness, and helplessness when situations were futile (Lee & Dupree, 2008). Several
studies highlight the effect of moral distress on personal relationships of nurses
(Maluwa et al., 2012; Wilkinson, 1987; Wilson et al., 2013). Nurses reported being
irritated and angry toward family members over small issues because of the physical
effects of moral distress, including a lack of sleep (Maluwa et al., 2012). Wilson et al.
(2013) surveyed 50 nurses of whom almost half reported impacts of moral distress on
their personal life; however, the types of impacts were not reported (Wilson et al.,
2013).
The reported responses to moral distress have been well documented throughout
the nursing literature. Many studies present implications for the sustainability of the
workforce. Less obvious is how moral distress affects other professionals working in
the multidisciplinary environment (Dzeng et al., 2015; Thurn & Anneser, 2019).
Nevertheless, the limited research on other professionals indicates moral distress is a
problem for many health professionals and needs further investigation (Astbury &
Gallagher, 2016; Camp et al., 2017; Dzeng et al., 2015; Thurn & Anneser, 2019).
2.2.7 Strategies to Mitigate Moral Distress

Health practitioners experiencing moral distress used several strategies,
including distancing oneself from the patient, withdrawal from patient-care,
avoidance, disengagement, abandonment, resignation, working part-time, changing
employment, and giving in (Dzeng et al., 2015; Elpern et al., 2005; Lawrence, 2011;
Maluwa et al., 2012; McClendon & Buckner, 2007; Radzvin, 2011; Thurn & Anneser,
2019; Wilkinson, 1987). Avoidance, disengagement and compartmentalising the
problem were cited in other studies (Deady & McCarthy, 2010; Laabs, 2007; Radzvin,
2011). Dzeng et al. (2015) found trainee physicians developed detached and
dehumanising approaches to patients, which they considered may contribute to a lack
of empathy. Radzvin (2011) found 77% of nurse anaesthetists had stopped working
with physicians because of experiencing moral distress. Leaving a position due to
moral distress was reported as a coping mechanism in several studies (Davis et al.,
2012; Elpern et al., 2005; Laabs, 2007; Lazzarin et al., 2012; Radzvin, 2011). Thurn
and Anneser (2019) found medical students were at risk of leaving because of moral
distress. In addition, Austin (2012) stated the number of nurses leaving the profession
due to moral distress may indicate the healthcare environment is unsatisfactory, which
raised concerns for the sustainability of the workforce and the impact on standards for
patient care.
In contrast, some studies report positive effects of moral distress and the
development of behaviours which could enrich practice. One such behaviour is sharing
stories with colleagues, peers, managers, supervisors, counsellors, and family (Deady
& McCarthy, 2010; Lievrouw et al., 2016; McClendon & Buckner, 2007; Mu et al.,
2018; Silen et al., 2008). Lievrouw et al. (2016) identified reflective practice enabled
learning and supported the team relationships in moral distress. Nathaniel (2006)
proposed the theory of moral reckoning, which also suggested the importance of
reflection in practice in dealing with moral distress. Others found that through
reflective processes nurses came to understand their emotions, feelings, and thoughts,
which allowed them to view issues from new perspectives (Deady & McCarthy, 2010).
The strategies used to cope with moral distress are well documented in the nursing
literature, but there is support for further investigation of the strategies used by other
health professionals.
2.2.8 Interventions for Moral Distress

This review of the moral-distress literature found little evidence of interventional
studies (McAndrew et al., 2016). Researchers call for more to be done to mitigate
moral distress (Brazil et al., 2010; Corley, 2002; Deady & McCarthy, 2010; Kalvemark
et al., 2003; Maluwa et al., 2012; Meltzer & Huckabay, 2004; Nathaniel, 2006;
Radzvin, 2011; Rice et al., 2008; Zuzelo, 2007). Improved education, role playing, and
group discussions were identified as possible strategies (McAndrew et al., 2016).
Some researchers found support for moral distress often occurs in, for example, the
informal tea breaks of health practitioners but formal forums for discussion of moral
issues are lacking (Kalvemark et al., 2003; Maluwa et al., 2012). Thurn and Anneser
(2019) suggested clinical supervision as a positive approach to the management of
moral distress in medical students, while Meziane, Ramierez-Garcia, and Fortin (2018)
investigated a reflective-practice intervention for nurses. Evidence highlighted that
peer support, hospital management and professional bodies could contribute to
facilitating communication, creating favourable work environments, improving
multidisciplinary collaboration, and supporting moral agency (Austin 2012;
McAndrew, Leske, & Garcia, 2011; Zuzelo, 2007;).
Several studies implemented educational interventions for moral distress

(Leggett et al., 2013; Molazem, Tavakol, Sharif, Keshavarzi, & Ghadakpour, 2013).
Role play and group discussions were used as educational techniques (Leggett et al.,
2013; Molazem et al., 2013). Leggett et al. (2013) found moral distress scores were
higher after education. Rice et al. (2008) suggested that confronting moral distress by
implementing interventions to alleviate its effects will be vitally important in
maintaining the health workforce and resolving anticipated shortages in the workforce.
However, interventional studies for moral distress were limited in the studies
reviewed.
2.2.9 Conclusion to the Narrative Review

This review began with an examination of the way in which moral distress had
previously been studied and the health professionals in which this construct exists.
Nursing research, especially in critical care settings, has dominated the moral-distress
literature. Other health professionals were excluded in the early research of this
phenomenon, but researchers now recognise the experience can affect all health
professionals, which is reflected in the more recent literature.
Extensive quantitative research began with Corley’s (1995) development of the

Moral Distress Scale (MDS), which was refined across subsequent decades (MDS-R).
This original tool was designed by nurses for nurses. It aimed to measure the intensity
and frequency of moral distress in nurses. When small numbers of other health
professionals were included in research, the MDS tool was modified to suit them. This
literature shows moral distress exists in a wide range of health professionals and
demonstrates the frequency and intensity of this phenomenon in other professions.
Many statements in the MDS and MDS-R pertain to EoL, highlighting the occurrence
of moral distress and its intensity and frequency in EoL situations. The EoL care
environment emerged as an area of prevalent moral distress.
The qualitative research in moral distress provided rich narratives of the

contributing factors, the effects of moral distress and the strategies used to cope with
this phenomenon. This literature is consistently dominated by studies of nurses; recent
critiques cite the importance of investigating this phenomenon in other health
professionals (McAndrew et al., 2016). The research highlights the need for a deeper
understanding of the conditions in which moral distress can develop. The interactions
among health professionals as they work together to provide care are not clearly
identified and investigated in the studies in this narrative review
An important contributing factor to moral distress is decision making in EoL.

Exclusion from decision making and a lack of team communication and collaboration
on decision making can contribute to moral distress within the healthcare team.
Healthcare today is provided within a multidisciplinary context, which has not been
well investigated in the moral-distress literature.
In summary, this narrative review identified the importance of moral distress and
its effects on health professionals. The review identified the EoL context as
contributing to moral distress in health professionals. However, the review did not
clearly identify how the MDT context contributes to the experience of moral distress.
Hence, this became the focus of the second part of the literature review.
2.3 PART TWO: THE FOCUSED REVIEW
The second part of this literature review initially set out to identify literature on
moral distress in the EoL setting in MDTs. Section 2.13 describes the search strategy
for the initial review. This search failed to uncover any studies which fully met the
criteria for inclusion. This failure led to a further search for literature which concerned
moral distress in teams, but not specifically in the EoL context. This broad approach
was used to capture all empirical works covering the nuances of moral distress beyond
the many previously identified studies of aspects of moral distress in individuals and
is described in Section 2.14.
Part two includes
• the methods of literature selection for the two searches conducted
• factors contributing to moral distress in teams
• strategies used to address moral distress within teams and
• the conclusion to the focused review.
2.3.1 The Method of Literature Selection for the First Search
The first search conducted in the focused review attempted to locate literature
on moral distress in both the EoL and team contexts. This search failed to locate any
literature which fully met the inclusion criteria. A flow chart illustrates this search
strategy (Figure 2.3).
Both title and abstract were included, and the keywords for moral distress were
“moral distress”, “stress of conscience”, “moral stress”, “troubled conscience”, “moral
conflict” and “stress related moral problem”. Teams keywords were “multidisciplinary
team”, “interdisciplinary team”, “interprofessional team”, “multidisciplinary
practice”, “interdisciplinary practice”, “interprofessional practice”, “trans-
professional practice”, “professional groups”, “health teams”, “teamwork” and
“team*”. The EoL search terms were “end-of-life”, “end of life”, “palliative*”, “care
of dying”, “end of life decision making” and “end of life care”.
The databases searched were Cumulative Index to Nursing and Allied Health
Literature (CINAHL), Pubmed, SCOPUS, Proquest Health and Medical Complete,
Web of Knowledge, TRIP, Informit, and Health Source (EBSCO). The searches were
limited to contemporary studies and publications from January 2000 to October 2019.
Only publications in English were included and those which were peer-reviewed,
where this was enabled in the database. The search identified 32 publications, 8 of
which were duplicates. The remaining 24 abstracts were reviewed by two researchers
for inclusion. This resulted in 12 articles, which were then fully read and screened for
inclusion. The exclusion criteria were studies in only one profession, studies which did
not specifically address moral distress or EoL issues, reports on single clinical cases,
literature reviews, opinion pieces, commentaries and studies included in the initial
narrative review. From the 12 articles fully screened, no studies met the full criteria,
that is, they did not examine moral distress in both the EoL and team contexts.
Figure 2.3 Flowchart of first search strategy for focused review.
Following this review, a broad approach was taken to identify literature which
included moral distress in teams. The following section discusses the search strategy
and the Critical Appraisal Skills Programme (CASP, 2019) review, which was
completed on these studies (See Appendix A). The main findings of these studies are
examined below.
2.3.2 The Method of Literature Selection for the Second Search

A further literature review was conducted searching the following databases:
Cumulative Index to Nursing and Allied Health Literature (CINAHL), Pubmed,
SCOPUS, Proquest Health and Medical Complete, Web of Knowledge, TRIP,
Informit, and Health Source (EBSCO). For this review, the searches were limited to
contemporary studies and publications from January 2000 to October 2019. Only
publications in English were included and those which were peer-reviewed, where this
was enabled in the database. This search identified 337 records. After removing the
duplicates and screening the abstracts of 224 records, 33 studies remained. The
exclusion criteria were studies in only one professional group and not a team of
professionals, studies only of patients, study protocols, literature reviews, single
clinical case studies, and studies which did not address moral distress in teams. The
remaining 33 studies were fully reviewed for inclusion by three researchers. Further
exclusions were made based on the aims of this study. The remaining six studies are
included in this review. Figure 2.4 illustrates the search process.
Figure 2.4 Flowchart of second search strategy for focused review.
A qualitative Critical Appraisal Skills Programme (CASP, 2019) tool was used
to provide a critical analysis of the six studies identified from these searches. This tool
assisted in reviewing studies across areas, including statement of aims, methodology,
research design, recruitment, data collection and analysis, ethics, findings, and
contribution to this research study. The CASP tool assists in eliminating weak studies
and verifying the validity of the studies for inclusion. See Appendix A for the analysis
from the use of this tool.
All the studies included met the main requirements of the CASP (2019) review,
although none of these studies disclosed the relationship between the researcher and
the participants. The date range of the identified studies was 2013–2018, which
suggests investigation of moral distress in teams, is a relatively recent concept. All six
studies were qualitative studies. The methodologies included case study,
phenomenology, and interpretive description; one study was a secondary analysis of
data from a qualitative study. Methods used were interviews (Bruce, Miller, &
Zimmerman, 2015; Henrich et al., 2016; Pye, 2013; Thomas et al., 2016; Thorne et al.,
2018), interviews and focus groups (Henrich et al., 2016), and the review of transcripts
from a previous qualitative study (Wall, Austin, & Garros, 2015). One study had
nurses and doctors as participants (Pye, 2013); the remaining five studies included
nurses, doctors and other health practitioners (Bruce et al., 2015; Henrich et al., 2016;
Thomas et al., 2016; Thorne et al., 2018; Wall et al., 2015).
The limitations identified by these studies were low participation rates (Henrich
et al., 2016), study confined to one clinical location (Henrich et al., 2016), inability to
generalise the findings (Bruce et al., 2015; Henrich et al., 2016; Thomas et al., 2016;
Thorne et al., 2018), and recall bias in using interviews (Thomas et al., 2016). Two
studies did not identify any limitations (Pye, 2013; Wall et al., 2015).
The findings of this review identified the main factors contributing to moral
distress in a team setting and the strategies used by individuals in the team to mitigate
moral distress. The contributing factors are decision making, team communication,
organisational culture, and patient care issues and goals of care. Three of the six
reviewed studies highlighted the strategies used to mitigate moral distress (Bruce et
al., 2015; Thorne et al., 2018; Wall et al., 2015). These strategies are venting to
colleagues and seeking mentors, debriefing to provide peer support, building team
collaboration, compartmentalising, blunting, and avoiding, and taking a break from
work.
2.3.3 Factors Related to Moral Distress in Teams
Four main factors identified in these studies either promote or ameliorate moral
distress (Figure 2.5).
• Decision making within the team: the need for shared decision making,
communication, and inclusion of the family in decision making.
• Communication within the team: good communication supports good team

collaboration; poor communication contributes to intrateam discordance and
conflict.
• Organisational culture: inadequate resources, inadequate managerial support

and relationships, and normalising of medical treatments.
• Patient care issues and goals of care: inadequate pain management,

inadequate care, patients being used for teaching purposes, and inconsistent
care planning leading to conflict in goals of care.
Patient care
issues and goals
of care
Contributing
Factors
Decision making
within the team Related to Organisational
Moral culture
Distress in
Teams
Team
communication
Figure 2.5 Factors related to moral distress in teams.
2.3.3.1 Decision Making within the Team
The studies recognised the need for shared decision making within the team to
support intrateam collaboration and prevent moral distress (Pye, 2013). In some
situations, moral distress arose when decision making was not shared (Bruce et al.,
2015; Henrich et al., 2016; Thomas et al., 2016; Thorne et al., 2018). Several studies
discussed decision making that contributed to moral distress, such as initiating life-
sustaining treatments or implementing treatments seen as non-beneficial and futile
(Bruce et al., 2015; Henrich et al., 2016; Thomas et al., 2016; Thorne et al., 2018).
Conflict arose when team members did not agree with the decisions about patient care
(Bruce et al., 2015). Both “too much care” and “too little care” were linked to decision-
making processes within the team that contributed to moral distress (Bruce et al., 2015;
Henrich et al., 2016; Pye 2013).
The lack of full disclosure and EoL conversations regarding resuscitation status
of patients was cited in several of these studies as contributing to moral distress (Bruce
et al., 2015; Henrich et al., 2016; Thorne et al., 2018; Pye, 2013). This lack of
disclosure contributed to compromised decision making and impacted the informed
consent of patients (Bruce et al., 2015). Henrich et al. (2016) found this could
contribute to patients being denied adequate care because of the lack of EoL
conversations surrounding prognosis and this contributed to moral distress for the
health professionals. Thorne et al. (2018) found difficult conversations were often
avoided and passed onto others, which resulted in delays in decision making.
Family participation in EoL decision making was considered essential to the care
of the patient but was also fraught with challenges for the team. Families were
recognised as being given too much responsibility in decision making (Henrich et al.,
2016; Thorne et al., 2018). In some situations, this led to what was considered futile
care and contributed to moral distress for health professionals (Henrich et al., 206;
Thorne et al., 2018). Patients were excluded at times from the decision making by
families, which was identified as not in the best interests of the patient (Henrich et al.,
2016). Difficult family dynamics were cited as contributing to complex decision
making, for example, when aggressive treatment was requested in EoL situations by
families (Henrich et al., 2016; Thorne et al., 2018). Families were identified as ill-
prepared to make informed decisions (Bruce et al., 2015). Pye (2013) found doctors
avoided conflict with families and left nursing staff to handle family issues. Henrich
et al. (2016) noted families became aggressive in situations when decisions were made
to implement comfort care over aggressive management. The family decision making
contributed to situations in which moral distress arose for the professionals in these
studies.
2.3.3.2 Communication within the Team

Planned team communication and organised meetings to discuss patient care
were recognised as important to strengthen and promote open and collaborative
relationships within the team (Bruce et al., 2015; Henrich et al., 2016; Pye, 2013).
Bruce et al. (2015) suggested formal debriefing sessions about cases could assist team
relationships and understanding the perspectives of other team members. Pye (2013)
stated effective communication is essential, especially for decision making and sharing
views to decrease moral distress. Henrich et al. (2016) found respect for team members
resulted from situations in which communication was appropriate. In addition, team
communication and leadership are critical in managing resuscitation situations
(Thomas et al., 2016). Further, good intrateam communication can decrease moral
distress associated with decision making (Bruce et al., 2015; Henrich et al., 2016; Pye,
2013).
Intrateam disagreements on patient care were cited across all the interviews in
the study by Bruce et al. (2015) as contributing to moral distress. The professional
communications which exist in teams contributed to what Bruce et al. called a “pas-
de-deux”. They identified this practice as a dance to reconcile disparate views on
patients’ prognosis and goals of care that affected the conversations of the team with
the patient and their family. One approach was to have only superficial conversations
with families to avoid mentioning the conflicting team views; the alternative approach
was to have conversations on goals of care which allowed the different views to be
considered (Bruce et al., 2015).
Poor communication resulted in members of the team feeling they were not
listened to (Henrich et al., 2016; Pye, 2013; Wall et al., 2015). Pye (2013) identified
nurses experienced powerlessness and felt devalued because they were not always
heard. Henrich et al. (2016) described situations in which health professionals in the
team identified their views on the patient care were ignored. Wall et al. (2015) made a
similar finding, which they related to the professional hierarchy that existed. In this
study, nurses stated they would be invited to offer input into decisions, but their input
was never given consideration (Wall et al., 2015). Further, Thomas et al. (2016)
identified emergency situations in which speaking up was difficult due to the high-
pressure environment and the senior person in the role of the team leader. Poor
communication was found to contribute to moral distress as professionals felt their
views were not listened to.
2.3.3.3 Organisational Culture

The culture of organisations has been identified as providing broader structural
conditions which contribute to the experience of moral distress within teams (Henrich
et al., 2016; Thorne et al., 2016; Wall et al., 2015). This includes a lack of resources,
lack of managerial support, poor relationships with management, and the normalising
of medical treatments (Henrich et al., 2016; Thorne et al., 2018; Wall et al., 2015).
Henrich et al. (2016) found insufficient resources, including both equipment and staff,
resulted in compromised patient care. Efforts to manage budget constraints were
considered important but contributed to a lack of nursing care for patients due to low
staffing (Henrich et al., 2016). A lack of time to support good patient care was
highlighted by Wall et al. (2015) and both nursing and medical staff recalled situations
of moral distress which were directly related to a lack of resources for the team (Wall
et al., 2015).
Lack of management support was evident when high expectations were placed
on the team to care for more patients than was felt safe, which triggered moral distress
(Henrich et al., 2016). Wall et al. (2015) found that poor relationships with
management made it difficult for the team to speak up or advocate for the appropriate
care for patients. This study noted managers punished staff through not providing
career opportunities and not supporting staff to speak up, producing hostility, fear, and
mistrust in management (Wall et al. 2015).
Thorne et al. (2018) identified an organisational culture in which several issues

precipitated moral distress. There were adequate resources in the health service, but
these were not always used effectively, for example, the accommodation for families.
In addition, the normalising of extensive medical treatments was culturally accepted,
which led to moral distress within the team members when families were not well
informed because of this culture. This study included large teams, which meant issues
were often passed on within the team and not resolved in a timely way, resulting in
moral distress.
2.3.3.4 Patient Care Issues and Goals of Care
Patient care issues and goals of care for patients contributed to moral distress
when they affected the provision of quality patient care. These issues included
inadequate pain management, witnessing poor care by other team members, patients
being used for teaching purposes and not receiving the best available care, and
inconsistent goals of care planning that led to too much care or too little care (Henrich
et al., 2016).
The inadequate management of pain for patients contributed to moral distress

when health professionals witnessed suffering. Henrich et al. (2016) found pain-relief
orders did not match what was needed by the patient and led to unnecessary suffering.
The quality of care offered by some team members was cited as leading to moral
distress when patients were not given appropriate and satisfactory care by other team
members (Henrich et al., 2016). When patients were used for teaching purposes for
junior team members in hospital settings, other health professionals felt the patient
care was not the optimal care they would have received if they were attended by more
senior team members (Henrich et al., 2016).
When goals of care were not agreed upon, both too much care and too little care
were evidenced as contributing to moral distress (Henrich et al., 2016; Thomas et al.,
2016). It was identified too much care was offered in EoL situations that appeared
futile, and when a family did not accept a prognosis and wanted care to continue
(Henrich et al., 2016; Thomas et al., 2016). Physicians implemented decisions to
continue care at times when they felt the outcome was uncertain. Too little care
occurred when the team was “pessimistic” about the survival of the patient and
withdrew care early when other professionals in the team felt it should have been
continued (Henrich et al., 2016, p. 59). These different views regarding the patient’s
goals of care were a significant source of moral distress within the team.
2.3.4 Strategies to Mitigate Moral Distress Within Teams

This review highlighted strategies used by health professionals and organisations
to mitigate health professionals’ experiences of moral distress (Figure 2.6).
Venting to
colleagues
Team
Taking a break
collaboration
Strategies
for Coping
with Moral
Distress in
Teams
Compartmental-
Debriefs ising, avoiding,
blunting
Figure 2.6 Strategies for coping with moral distress within teams.
Several strategies and behaviours were identified in response to the experiences

of moral distress across the reviewed studies (Bruce et al., 2015; Thorne et al., 2018;
Wall et al., 2015). These strategies involved using the team to support members and
cope with moral distress, such as venting to colleagues and seeking mentors, debriefing
to provide peer support, and building team collaboration. Individual strategies were
also used by team members: compartmentalising, blunting, avoiding, and taking a
break from work.
Venting to colleagues was cited as the most widely used behaviour in response
to moral distress (Bruce et al., 2015; Thorne et al., 2018). Sharing the story with others
helped to place the experience in a new perspective. Thorne et al. (2018) identified
that this communication assisted with reflecting on the experience and enabled team
members to rationalise their actions and philosophise on the experiences. Bruce et al.
(2015, p. 828) found venting to people within the same profession was important
because these people would best understand both the situation and any “gallows
humour”. Such humour was used to lighten the situation that had occurred (Bruce et
al., 2015). Avoiding colleagues who were dismissive of venting was also important
(Thorne et al., 2018). The seeking of a mentoring network was considered a
constructive behaviour which supported the venting in situations of moral distress
(Bruce et al., 2015). Mentoring allowed for discussion of cases and validation of the
experiences (Thorne et al., 2018).
The use of formal debriefing in teams was critical in managing moral distress in
a paediatric intensive-care setting (Wall et al., 2015). Formal debriefs were held for
complicated situations, and after distressing events. However, one participant noted
these meetings occurred during a crisis and were not always well attended due to
workloads and shift work (Wall et al., 2015). Thorne et al. (2018) cited conflicting
findings that suggested debriefing in teams could also cause moral distress because
time pressure to complete work was impacted by these processes.
The building of team cohesion and collaboration provided support for moral
distress. Bruce et al. (2015) stated team-building activities could assist in sharing the
experience of moral distress and diffuse situations through discussions. This
encouraged team “camaraderie”, which helped minimise the impacts of moral distress
(Bruce et al., 2015, p. 828). When cohesion and collaboration worked well, the team
was able to come together and ensure no individuals were trapped in situations of
moral distress without support (Bruce et al., 2015). Thorne et al. (2018) identified team
collaborations enabled situations to be viewed from different angles, which supported
individuals in difficult situations. Pye (2013) stated good team communication was
important to collaboratively share ideas and feelings to reduce moral distress.
The individual strategies used to mitigate moral distress included

compartmentalising, blunting, and avoiding, and taking a break from work (Thorne et
al., 2018). Compartmentalising means focusing on what one can control and leaving
what one cannot control aside. Practitioners achieved this through reflection and
keeping a perspective on the issues. Blunting and avoiding were used to block out
feelings and emotions associated with difficult ethical situations (Thorne et al., 2018).
This included leaving work situations at work, using distractions at home to avoid
thinking about work, and minimising emotional responses in situations as a way of
blocking them out (Thorne et al., 2018). Bruce et al. (2015) discussed the use of
withdrawing from situations and detaching to protect oneself but identified this as a
maladaptive behaviour by physicians to moral distress; nurses, however, became more
emotionally invested in situations.
Taking a break from work was highlighted by Thorne et al. (2018). This strategy
involved taking a day off, but staff did not do this if it put more pressure on their
colleagues within the team due to inadequate staffing. Some professionals stated taking
time off or leaving the work area assisted them to distance themselves from moral
distress (Thorne et al., 2018); others preferred to use exercise to distance themselves.
Seeking support from family and their home life was used to keep a perspective on
their working life and to avoid thinking about work (Thorne et al., 2018).
2.3.5 Conclusion to the Focused Review

This review aimed to focus on the phenomenon of moral distress and how it is
experienced within a team setting. There was a paucity of research specifically
identifying the team’s role in both perpetuating and managing moral distress. The
research included in the focused review confirmed that the team in which health
professionals work can influence this phenomenon in several areas: decision making,
communication, organisational culture, and in relation to patient-care issues and goals
of care.
Shared team decision making is needed within teams to manage conflict and to
communicate on patient treatments to ensure everyone in the team agrees on the
decisions. Family input into decision making and family dynamics need to be managed
to ensure the outcomes for the patient are acceptable to the team. Discussions on
disclosure to patients at EoL need to be shared so all team members understand the
intentions of the decisions made.
Communication within the team is critical to good team functioning and team
collaboration. Ineffective team communication, poor team relationships, not being
listened to and intrateam disagreements result in moral distress. There was evidence
of team members feeling devalued and powerless in situations of poor communication,
which aligned with the professional hierarchy within the team. A “pas-de-deux” was
noted as a type of dance used to reconcile disparate views within the team (Bruce et
al., 2015).
The organisation in which a team exists can exert influences through the
organisational culture which may not support the team in providing appropriate care.
A lack of resources such as time, staffing and budget constraints can affect the
provision of care to patients and result in moral distress for team members. A lack of
support and poor relationships with management may reflect a dysfunctional
organisational culture in which teams cannot perform well. An environment of fear,
mistrust and hostility prevented team members from speaking up about patient-care
issues. The culture of normalising extensive medical treatments did not allow families
to be well prepared and contributed to moral distress.
Patient-care issues and goals of care were central to the team experience of moral
distress, especially when patient care did not meet the expected standard. Situations of
poor pain management, witnessing poor care by other team members, patients being
used for teaching purposes, and inconsistent care planning all contributed to moral
distress. These issues highlight the need for team collaboration, team communication
and a supportive culture which values the ideas and views of all team members.
This review highlighted strategies used by both teams and team members to cope
with moral distress. Mentoring, venting to others, debriefing, and building team
cohesion and collaboration are important ways in which teams can support
professionals. Individuals used strategies of compartmentalising experiences,
blunting, and avoiding, using distractions and taking a break from work as ways of
coping with the individual experience of moral distress.
2.4 CONCLUSION TO CHAPTER TWO
This chapter began with a narrative review of the literature on moral distress in
EoL, which highlighted the importance of this phenomenon in healthcare settings. The
EoL context was identified as a significant area in which healthcare professionals
experience moral distress. Nursing research on moral distress, especially in critical
care settings, dominates the literature. Recently, however, all healthcare professionals
are recognised as experiencing moral distress.
The focused literature review identified the limited research on moral distress in
teams. This review identified six research studies which concerned moral distress
within a team setting. These studies evidence that moral distress does occur within
teams and is influenced by team interactions and team settings. Team decision making
and team communication are critical areas for further investigation to identify their
contribution to moral distress. The relationship between organisational climate and
experiences of moral distress within the team is not well investigated in the moral-
distress literature. These deficits supported the need for further research into moral
distress in EoL within a team setting. This chapter concludes with the research
question:

end-of-life care to patients?
Chapter 3: Research Design
3.1 INTRODUCTION
An extensive literature review in Chapter 2 highlighted the paucity of research

investigating moral distress in multidisciplinary teams (MDTs) providing end-of-life
(EoL) care to patients. This deficit supported this research. Chapter 3 is divided into
four parts that present the research paradigm, theoretical approach, methodological
design, and methods used in this research.
Part One of this chapter examines the social constructivism paradigm which
provided the philosophical approach for this research. It examines the way in which
meaning is constructed by people as they engage in social situations and contexts
(Crotty, 1998). This view supports the idea in which meaning of events can only be
constructed and does not exist within the context without the input of humans.
Part Two of this chapter considers the theoretical approach to this research.
Impetus for using a theoretical perspective was to understand how people develop their
moral beliefs and the “prosocial” motives and behaviours that dictate their actions and
responses in moral and ethical situations (Hoffman, 2000, p. 135). The theoretical lens
applied was the theory of empathy and moral development based on the affective
response known as empathy (Hoffman, 2000). Hoffman (2000, p. 3) defines empathy
as the “spark of human concern for others, the glue that makes social life possible”. In
his view empathy is the motivator for moral behaviour. Role of theory in case study
supports the analytical generalisation of findings (Yin, 2018).
Part Three of this chapter provides an overview of case study methodology and
the justification for its use in qualitative research. The definition and types of case-
study design are examined; including embedded multiple case studies, which will be
used in this research. The historical background which supports the use of this
methodology is justified and the strategies for data collection and analysis in this
methodology are explained.
Part Four of this chapter is the case description, which specifically defines the
cases used in this research. The two MDT cases are identified. One team was a renal
team providing EoL care to patients with end-stage renal disease. The second team
was a palliative care team, which included an inpatient palliative care unit and an
integrated community palliative care team. The purposive recruitment of participants
for this research, the data analysis techniques and data management processes used in
this study are clearly outlined. Both limitations and ethical considerations for this study
are identified.
3.2 PART ONE: RESEARCH PARADIGM
Social constructivism is the philosophical paradigm which underpins this

research. Meanings are assumed to be negotiated through social processes and
interaction with others (Crotty, 1998). John Creswell (2013) identified that these
meanings are many and varied and can lead the researcher to examine the complexity
of views which exist, rather than trying to reduce them. What is real in this paradigm
is not the objective, but instead evolves through the interactions and agreements which
occur in the social world (Cottone, 2001). This interpretive approach aims to explore,
describe and produce meaning within a specific context, time, and social situation
(Whitehead, 2013). Interpretive research encourages a dialogue between the researcher
and the researched (Whitehead, 2013).
Researchers in this paradigm recognise their own social and historical

backgrounds continue to influence their actions and reactions within their world.
Interpretations they make within situations arise from many factors which have
influenced their thinking and actions and continue to do so. The researcher becomes
involved in the research process and is reflexive in recognising their influence in the
research. This reflexivity assists the researcher to recognise how they shape the
findings, the interpretations, and the conclusions of a study (Creswell, 2013). The
researcher’s social background and attitudes should be exposed to maintain the rigor
of the research. Questioning the views and bias of the researcher during data collection
and analysis is important to expose any influence on the research. Researchers must
position themselves to acknowledge their own interpretations flow from things which
have shaped their own growth in interactions in the social world (Creswell, 2013).
Cultural influences, employment history, family, and social engagement all influence
the researcher’s thinking; recognising this is critical to ensure robust research.
Most of my nursing career has been spent in acute care backgrounds where I have
seen the existence of moral distress played out in decision making, communications
and the interactions within teams, and with patients and families. I have developed
strong opinions about the right and wrong pathways of care for patients. I started this
research by writing about some of these opinions and biases to identify and expose
what they were. By examining these in the beginning and throughout the research I
began to develop more questions and be more analytical about my own biases and
opinions, and the opinions of others. Being a nurse was also a great influence on
understanding the nursing views in this study but needing to really seek out the other
professional views I was not familiar with.
Using the philosophical paradigm of social constructivism meant acknowledging

my own clinical background as a nurse and that my own vast experiences over forty
years could influence the research. The way I have understood situations have shaped
my own decisions and judgements, and the meanings I have attributed have evolved
through my own interactions in the clinical world. I recognised throughout this study
that my opinions and reactions would influence my interpretations of the data. Being
reflexive throughout the research was necessary to examine biases and opinions I had
about the data. Many of these opinions and ideas were discussed with the research
team throughout the study. My own background could influence the questions I
pursued during data collection and the way I approached the data analysis. It is about
positioning yourself to identify these influences and the part they may play. I wrote
reflections after each interview and included personal reflections at the end of each
findings chapter. (See 4.7 and 5.7). These sections reflect my own integration into the
research.
Social constructivism and interpretive approaches support interaction and

understanding among people. They are aligned with qualitative research designs,
which incorporate the methods to enable this. Yin (2018) states case-study research
arises out of a need to understand a complex social phenomenon and is an appropriate
methodological design to support research in social interaction. The use of interviews
and focus groups enables investigation of participants’ experiences and the exploration
of perceptions and ideas (Hirshfield & Underman, 2017). In this paradigm, questions
should be broad and general and not limit participants’ responses (Creswell, 2013).
Case study itself is not assigned a defined ontological, epistemological or
methodological position; rather, it can be used across different paradigms (Rosenberg
& Yates, 2007) and has been described as “a bridge across paradigms” (Luck, Jackson,
& Usher, 2006, p. 103). The justification for the use of case study in this research is
further explored in the Part Three of this chapter.
3.3 PART TWO: THEORETICAL APPROACH
3.3.1 Introduction
The use of a theoretical approach in this research was desirable to assist in
forming analytical generalisations which support the outcomes of a case-study inquiry
(Yin, 2018). A theory of empathy and moral development was chosen for this case
study to contribute to the understanding of how professionals’ prosocial behaviour
develops, and its relationship to moral distress (Hoffman, 2000). This theory provides
a unique lens through which to understand the behaviour of individuals in moral and
ethical situations. The aim of Martin Hoffman’s (2000) theory of empathy and moral
development is to provide understanding of empathic arousal and how empathy
develops from simple forms in the preverbal child to the complex forms which
ultimately lead to empathic responses and prosocial behaviour in adults (Figure 3.1).
Prosocial behaviour is described as “behaviours which benefit others without the need
of reward” (Hoffman, 2000, p. 135). Hoffman explores how morals are internalised
from early socialisation processes and behaviours, which leads to this prosocial
behaviour in mature adults (Hoffman, 2000). Several factors influence the arousal of
empathy: a “here and now” bias, the “familiarity bias”, “responsibility guilt”, and the
process of “role taking” in which ones visualises themselves in the position of the other
person (Hoffman, 2000). These processes are discussed below in the sections on
empathic arousal and empathic bias. “Empathic over arousal” can lead to a situation
in which the person disengages from showing empathy and avoids contact as a
protective mechanism to avoid distress (Hoffman, 2000, p. 198).
This theory was chosen after considering the phenomenon of moral distress and
undertaking the literature review, which identified the moral behaviours shown in
situations of moral distress. The literature observes empathy in caring for patients at
EoL, although it was not always explicitly stated. The prosocial behaviours identified
by Hoffman (2000) resonated with both the literature and the researcher’s own
experience of this phenomenon, providing a unique lens through which to view moral
distress.
Figure 3.1 Diagrammatic representation of the theory of empathy and moral development
(Adapted from Hoffman, 2000).
3.3.2 The Development of the Theory

Hoffman’s theory was developed from work during the 1960s and has been
included in a wide variety of textbooks on developmental psychology and in numerous
academic papers published in peer-reviewed journals (Hoffman, 2000). This theory
developed after Hoffman considered Kohlberg’s cognitive–developmental approach
to moral development, which rested on the work of Jean Piaget (as cited in Hoffman,
2000). Both Kohlberg and Piaget viewed moral development from a cognitive
approach. Kohlberg expanded the work of Piaget (which was based on children aged
6–13 years) to include further stages of moral development in adolescents. He
continued to refine his theory into the 1980s (as cited in Hoffman, 2000). Kohlberg
extended his theory to include the process of reflection in achieving maturity of moral
judgement (as cited in Hoffman, 2000). These theories heavily influenced Hoffman to
examine the development of empathy as the main influence on a person’s moral
behaviour (2000). Hoffman began development of his theory in the 1960’s but
continued to expand and explain his theory into the 2000’s (Hoffman, 2000).
Hoffman (2000, p. 135) nominated biological and cognitive development, along

with socialisation, as forming the basis for developing mature “prosocial behaviour”,
moral internalisation and empathy. He proposed that development of morality in a
person begins at a superficial level in early childhood and develops into a profound
level in adulthood. While conceding the stages of moral development are not
succinctly defined and ordered, Hoffman outlined a process which supports the
development of moral thinking (Hoffman, 2000). The childhood processes are
mimicry, classical conditioning, and direct association, which lead on to more mature
processes such as mediated association and social perspective taking (Hoffman, 2000).
3.3.3 Early Moral Development

The immature stages of moral development begin in early infancy according to
Hoffman (2000). A newborn baby will cry in response to another baby’s cry, called
“mimicry” and “newborn reactive cry” (Hoffman, 2000, p. 37). These responses are
believed to have developed through natural selection; the infant cries in response to a
cry from the same species (Hoffman, 2000). An infant will seek out comfort in
response to this distress. Hoffman recognised that both classical conditioning and
direct association in preverbal infants play a role in the development of empathy.
Children respond to the positive and negative feedback of facial expressions from their
parents in early infancy. Verbal discipline or feedback occurs in early childhood. These
rudimentary responses are believed to be early signs of empathy (Hoffman, 2000).
Children may learn to associate distress in others with how they feel in the same
situation. Hoffman (2000) called this “egocentric empathetic distress”. A study of
babies showed several babies tried to comfort another baby who was crying loudly
after an injury by climbing on this baby (Hoffman, 2000). The response may have been
inappropriate, but nevertheless a display of early signs of empathy in response to the
crying of another baby. Hoffman identified quasi-egocentric empathic distress when a
child comforts a distressed child by taking the child to their own mother and not to the
distressed child’s mother. The child begins to understand they are a separate person,
even though their response may not achieve the desired effect (Hoffman, 2000). This
early moral development is greatly affected by the socialisation processes and
parenting to which the child is exposed (Hoffman 2000).
Hoffman (2000) further developed the idea that socialisation is crucial to the
internalisation of morals and empathy, which begins with childhood and parental
discipline. This internalisation enables the person to adopt moral values as their own.
Hoffman (2000, p. 135) identified the internalised norm as “deriving autonomously
from within oneself”. When a child demonstrates acceptable behaviours they are
rewarded, while unacceptable behaviours are disciplined. Hoffman developed this
aspect of the theory by drawing on his early research and the research of others in child
psychology (Hoffman, 2000). In conclusion, Hoffman suggests empathic responses
become conditioned and thus outside the conscious control of the person, which is
related to the processes of mimicry, classical conditioning, and direct association in
childhood. These processes can “compel” the person to act in situations requiring a
response (Hoffman, 2000, p. 61). According to Hoffman, these socialisation processes
lead to empathy and the development of prosocial behaviour.
3.3.4 Mature Moral Development

The early stages of moral development lead to the more mature stages and the
development of metacognitive awareness. This awareness occurs when a person feels
distress as a response to an event happening to someone else (Hoffman 2000). While
not providing a definition of a moral, Hoffman (2000, p. 134) discusses a “sense of
right and wrong” as being important to the internalisation of morals. “Prosocial moral
structure” is defined as “a network of empathic affects, cognitive representations and
motives” (Hoffman, 2000, p. 134). This structure can lead to behaviour Hoffman
identified as prosocial behaviour.
Hoffman (2000, p. 71) described the mature stage of moral development as

“veridical empathetic distress”. This consists of two steps, the first being “empathic
distress” in response to another person. A person responds with empathy, although this
may be guided by situations and the influences of others. For example, responding to
pain, but being aware others may view a response as being weak, and so the distress
shown is modified due to the situation. The second step is known as “broader empathic
distress” (Hoffman, 2000, p. 80). This relates to the ability to understand and show
empathy in a broader social context, as an adult would experience when considering
the plight of the homeless. This step entails viewing oneself in the position of another
(role taking) and understanding their feelings and situation. Hoffman (2000, p. 56)
identified this response as leading to intense feelings because this activates one’s own
personal system of needs and concerns. This concept relates to the experience of moral
distress – the literature highlighted the distress felt by health practitioners when they
envision themselves in the position of the patient who is undergoing painful tests and
treatments (Rice et al., 2008; Thurn and Anneser, 2019).
3.3.4.1 Empathic Arousal

Empathic arousal in the mature moral person occurs through the two processes
of mediated association and social perspective taking (also known as role taking).
Mediated association identifies the use of language as a way in which empathy can be
aroused. Verbal cues must be interpreted and are often related to experience or
associated with meaning to arouse empathy. When verbal cues are accompanied by a
visual stimulus, for example, seeing a person in pain, faster processing and
understanding of the cues’ meaning may occur. The earlier stages of moral
development such as conditioning may still influence the adult reaction in situations
of distress. The association of certain language with pain and suffering has been
conditioned to generate a response of empathy. Language can also influence the
empathic arousal when the distressed person is not actually present. For example,
reading or hearing a story of a person in distress can still invoke an empathic response
through the association with pain or distress.
The second process of empathy arousal involves role taking and imagining
oneself in the position of the other person. Through this process of imagining how the
other person feels, empathy arousal can be strengthened. Previous studies highlighted
by Hoffman (2000) showed this process of role taking increased empathy arousal.
Further, the empathy aroused was greater than if the person just observed the other
person’s movements or expressions. Others concur with this empirical research on the
process of role taking and identified its importance in the arousal of empathy (Batson,
Early, & Salvarani, 1997). This role taking occurs in adults with mature moral
development.
3.3.4.2 Empathic Overarousal and Empathic Bias
Hoffman (2000) identifies limitations to empathy that may influence its role in
morality, including empathic overarousal and empathic bias. Empathic overarousal
occurs when the empathic distress transforms into personal distress. Hoffman (2000)
notes this distress may result in avoiding the sufferer. This scenario relates to the
experience of moral distress: nurses may avoid patients and patient care due to their
own personal distress (Deady & McCarthy, 2010; Kilcoyne & Dowling, 2007; Laabs,
2007; Radzvin, 2011; Wilkinson, 1987). Hoffman (2000) states this overarousal may
not always result in avoidance because the demands of a person’s role may intensify
their empathy. For example, health professionals may be motivated to help people by
showing empathy toward patients, regardless of how difficult the situation. However,
responsibility guilt may produce a similar response. Responsibility guilt is discussed
below. When moral development occurs, empathy can be influenced through guilt. A
child is made to feel guilty if they hurt or injure another child. This guilt becomes
conditioned to stimulate empathy.
To reduce this overarousal, Hoffman suggests workers use defensive strategies

such as taking breaks, a self-efficacy belief (Bandura, 1997), and the use of moral
principles through which people can learn to detach themselves from another’s plight.
The moral-distress literature evidences health professionals use strategies such as
choosing to detach themselves from patient situations and detaching from feeling
empathy for the patients they care for (De Villers & DeVon, 2012; Deady & McCarthy,
2010; Kilcoyne & Dowling, 2007; Radzvin, 2011; Wilkinson, 1987).
The other limitation identified by Hoffman (2000) is empathic bias, also called
a “here and now” bias (Hoffman, 2000 p. 197). Empathy becomes directed at the
person in the vicinity. Although empathy may be felt for others such as homeless
people, the people in immediate proximity are shown empathy because they are nearby
and in the here and now. The “familiarity bias” identified by Hoffman (2000, p. 197)
means empathy is shown in situations with which the person is familiar. Hoffman
viewed these limitations as a way of protection of the self. If everyone showed empathy
for all the situations about which they are morally concerned, they may be unable to
function effectively (Hoffman, 2000). Both this here and now bias, and familiarity
bias may account for the empathy experienced by health professionals who are in
everyday contact with patients.
3.3.4.3 Responsibility Guilt
Through the development of prosocial behaviours, Hoffman (2000) argues for
development of guilt as a motive for action. Throughout their development, children
and adults suffer guilt when they do not help someone in distress. This is triggered
through their socialisation processes and internal scripts which have developed
throughout their life. Children can be made to feel guilty when they harm another child
and suffer the consequences. Adults use higher-level cognitive processes to feel guilty
if they cause or think they have caused harm. Hoffman argues for “responsibility guilt”
as guilt experienced when one is responsible for another, even if they did not cause the
harm (Hoffman, 2000, p. 12). Arguably, therefore, health professionals suffer this guilt
when they recognise harm to a patient, even if they did not directly cause the harm;
they feel a responsibility and that they should have done more to change the situation.
This guilt may be experienced as moral distress when health professionals feel they
are responsible for protecting and advocating for the patient.
3.3.5 Conclusion to Part Two

The theory of empathy and moral development developed by Martin Hoffman
(2000) provided a lens for this research. This theory has been widely cited in diverse
literature and provides an understanding of the development of empathy in humans,
and how this ultimately leads to the more complex prosocial behaviours observed in
adults. Empathy arousal holds a unique position in the practice of health professionals.
Empathy is a required trait to show caring to others and to understand the position of
the patient and family, including in the EoL setting. The theory views empathy as
socially constructed, which aligns with the social constructivism paradigm of this
research.
3.4 PART THREE: METHODOLOGICAL DESIGN – CASE STUDY
3.4.1 Introduction
Part Three provides an overview of case study methodology and the justification
for its use in qualitative research. The definition of case study, the historical
development of this methodology, and the importance of identifying the case are
discussed. Both single and multiple case-study designs and their application in
qualitative research are examined. The methods of data collection in case study, and
the use of multiple sources of evidence to support literal or theoretical generalisations
from the data are justified. Approaches to data analysis are examined and the
credibility of case study is explored. Part Four then provides the case description for
this study and the specific design used.
3.4.2 Case Study Defined

Robert Yin (2018, p. 15) provided a comprehensive definition for case study:
an empirical enquiry that investigates a contemporary phenomenon (the case) in

depth and within its real-world context, especially when the boundaries between
phenomenon and context may not be clearly evident.
Yin (2018) is well recognised within the field of case study methodology. Other
prominent researchers have authenticated his use of case study (Creswell, 2013; Stake,
2006). Stake (2006) identified case study as critical when complex patterns and
processes occur in the context within which the phenomenon is situated. Further, Gray
(2009) states the case-study approach is beneficial when the phenomenon and context
are interrelated. Case study has been widely used to research phenomena in many
contexts (Creswell, 2013; Giesbers, Schouteten, Poutsma, van Der Heijden, & van
Achterberg, 2016; Simons, 2009; Yin, 2018).
3.4.3 Historical Development of Case Study

Case study has a significant history and emerged between the First and Second
World Wars as an approach to research, with origins in early education, psychology,
medicine, law, anthropology, and political science (David, 2006; Simons, 2009). Each
of these disciplines has used case study for specific purposes and developed techniques
to support the validity of its use. Simons (2009) justifies case study in research
education to investigate curriculum change. Others support the use of case study in
multiple disciplines (Creswell, 2013; David, 2006; Harrison, Birks, Franklin, & Mills,
2017; Stake, 2006; Yin, 2018). Mathew David (2006) edited several volumes with
collections of case-study research in medicine, political science, anthropology,
business, life history and education. These studies identify case study as a valid and
reliable methodology and support its use to examine the meaning in constructing
identity and relationships in the working environments of participants (David, 2006).
Employing case study as a methodology recognises the need to rigorously address
definition and design issues. Stake (2006) supports this approach for its ability to
provide depth, detail, and richness of data in order to fully understand a phenomenon,
while Simons (2009) highlighted case study can explore multiple perspectives and
contested viewpoints.
3.4.4 Defining the Case

To employ this methodology, the case must be defined and clearly articulated
(Creswell, 2013; Rosenberg & Yates, 2007; Stake, 2006; Yin, 2018). A case can be an
individual, group or phenomenon of interest, and multiple cases can be examined
(Stake, 2006; Yin, 2018). Creswell (2013) stressed the importance of defining the case
within boundaries. Walshe (2011) viewed case selection as pivotal to the success of
this methodology. Rosenberg and Yates (2007) state that identifying the case is the
most important step to support case-study design. Defining the case boundaries has
always been problematic and is a challenge to the researcher, who must engage
reflexivity to counter this (David, 2006). An in-depth comprehension of the case and
its boundaries is viewed as essential for a notable case study (Creswell, 2013). See
3.5.2 of this chapter in which the cases are identified for this study.
3.4.5 Single and Multiple Case Study Design

Yin (2018) identified the two main types of case study design: single or multiple
case studies. Single case study designs are most appropriate when they represent a
critical, unusual, longitudinal, or revelatory case (Yin, 2018). Multiple case study
designs are appropriate to improve reliability and generalisability because the evidence
is more compelling when multiple cases are considered (Gray, 2009; Walshe, 2011).
Multiple case study design is considered more robust because it uses several cases to
attempt to replicate the literal or theoretical findings (Yin, 2018). Convergent evidence
from multiple cases may support more robust findings than those derived from a single
case; rival explanations from the data collected may require more cases to explain or
refute explanations.
However, multiple case study designs may be resource and time intensive, which can
limit their use (Yin, 2018). Gray (2009) identified case study can lead to volumes of
documentation that can be difficult to manage, but Yin (2018) found this occurs when
both participant and ethnographic observation are used to collect unmanageable
volumes of data. Contemporary case study employs a variety of data-collection
techniques, including documents, archival records, interviews, focus groups, direct
observation, participant observation, and physical artefacts (Harrison et al., 2017; Yin,
2018). Through triangulation and convergence of the evidence from the various data
sources, construct validity can be achieved (Yin 2018) and is supported through
multiple cases. Some have criticised case study methodology because generalising the
results to other cases in other organisations or locations is problematic (Payne, Field,
Rolls, Hawker, & Kerr, 2007). Yin (2018) countered this criticism by stating a multiple
case study design replicates any enquiry and support the results. For this study a
multiple case study design was chosen. (See 3.5.1 of this chapter).
3.4.6 Holistic and Embedded Case Study Design

Choice of design will depend on the type of phenomena under study and the research
questions (Yin, 2018). Design choices for case study include holistic and embedded
(Yin, 2018). Holistic designs are used when there is a global approach to data analysis,
while embedded designs are chosen when data analysis occurs at multiple levels. In
holistic designs the original research questions may distort, leading to a threat to the
study’s validity (Yin, 2018). This potential problem can be avoided if an embedded
design is used (Yin, 2018). Embedded designs may pose a limitation when the units of
data collection become the focus of the study instead of the larger case study (Gray,
2009). For this study an embedded design was used. (See Figure 3.3 in section 3.5.6).
3.4.7 Data Collection in Case Study Design

Case study encompasses multiple techniques of data collection and data sources
to obtain a holistic and detailed understanding of a phenomenon (Creswell, 2013, Yin,
2018). Yin (2018) identified the main principles of data collection for case study
methodology:
• Use multiple sources of evidence.
• Create a case-study database.
• Maintain a chain of evidence.
Data collection continues until confirmatory evidence is gained for the main
topics from two or more sources, as suggested by Yin (2018). This evidence includes
attempts to gain contradictory or rival evidence for the material under investigation. A
case-study database should be maintained throughout the research and include file
notes and reflections. This maintains the chain of evidence identified by Yin (2018).
To collect the evidence, a variety of methods can be used, which can include
interviews, focus groups and written narratives. For this study see section 3.5.4 in
which data collection methods are discussed.
3.4.7.1 Principle One: Use Multiple Sources of Evidence

Interviews
The interview is one of the main sources of data collection in case-study research
(Gangeness & Yurkovich, 2006; Yin, 2018). When used in a case study, interviews
can provide information on “what happened, why and what it means” (Rubin & Rubin,
2005, p. 6). The interview has been widely used in the exploration of phenomena,
providing examples of rich narratives. Some researchers consider interviews the
preferred method (Mitton et al., 2010). Wiegand and Funk (2012) suggest face-to-face
interviews add to the depth of data and allow for further exploration of a topic. Semi-
structured interviews allow conversational-style exchanges to help clarify thoughts,
and for dialogue and questions to emerge naturally as interviews progress. This process
is called “following the line of inquiry” for the research, but also allows for friendly
and nonthreatening questions (Yin, 2018).
Focus groups
Patton (2002) asserts focus groups can be conducted to gather high-quality data
in a group context. Views can be voiced with consideration of others and confidence
in the emerging patterns within the research increased. Gray (2009) states focus groups
allow for group dynamics to stimulate discussion on the issues under investigation and
highlight the experiences of participants in relation to the phenomenon. Group
discussion has important advantages, but also has limitations. Group dynamics and
power imbalances may prevent all participants from freely voicing their experiences
and opinions. Combining this method with individual interviews can overcome this
limitation. The interviewer needs to encourage all participants to talk to reduce
domination within a focus group (Creswell, 2013).
Narratives
Written narratives provide a stable source of information and stories of
experience (Yin, 2018). Both the participants and the researcher may write narratives.
An advantage of these written pieces is they can be reviewed repeatedly – they provide
a stable source of data with exact details of events which may assist in gaining an
understanding of the case. Yin (2018) also asserts documentary evidence can be used
to augment and corroborate, or to contradict evidence collected from other sources. In
addition, the researcher can create new narrative materials as reflections throughout
the data-collection and analysis phases. The reflections form part of the case-study
database (Yin, 2018). This assists in meeting case-study objectives of using multiple
sources of evidence for the case.
Selecting participants in case study

Selecting the right participants for a case study invariably depends on the study
and its purposes. Purposive sampling has been identified as necessary to select
participants with experience of the phenomenon under investigation (Creswell, 2013;
Stake, 2006). Yin (2018) asserts the aim of “analytical generalization” is critical to
case-study findings and the size of the sample is less important. The literature contains
a range of views on how many participants are enough. However, consensus suggests
that when no new themes are presented and confirmatory cases are being identified,
data collection is probably sufficient (Patton, 2002). Creswell (2013) suggests three to
five participants for each case study may be enough. The sample depends on the
proceeding data analysis to achieve the aims of the case study.
3.4.7.2 Principle Two: Creating a Database

Case-study research suggests creating a database of, for example, field notes,
interview notes and reflections. Yin (2018) suggests the database helps improve the
reliability of the case study. All the data collected in a case study should be stored and
organised, so they are available when completing the case analysis. Gilgun (2005)
states that writing is constructed by the researcher and emanates from the process of
engagement with the research. This engagement and reflective process can also form
part of the database, which Yin (2018) states is critical to case study.
Field notes taken during interviews or focus groups can be handwritten and do
not need to be edited (Yin, 2018). They should be organised, complete and accessible
to the researcher. Interview transcripts, recordings and other case-study documents can
also become a part of the database and need to be filed and sorted to assist the
researcher in engaging with the content. Any new narrative materials such as
reflections by the researcher can complete this database and assist in maintaining the
chain of evidence for the case study.
3.4.7.3 Principle Three: Maintain the Chain of Evidence
A case study should allow the chain of evidence to be clear, following logical
and accurate steps. Yin (2018) likens this process to following forensic investigations
in which the steps can be carefully traced to provide the evidence for the case and the
conclusions drawn from the case. The chain of evidence increases the construct
validity of the case (Yin, 2018). Maintaining the chain of evidence may involve using
computer software to track the data collection and the data analysis. Using memos in
the data-analysis process assists in following the way in which the themes were
developed.
3.4.8 Data Analysis in Case Study Design

A critical aspect of case-study research is to begin with the analysis at the
individual level and then progress to the collective (Patton, 2002). By collecting data
at the individual level, data analysis can occur on the multiple levels, which contributes
to compelling findings in case-study research (Yin, 2018). If data are only collected at
the group level, it becomes impossible to go back and separate the data at the individual
level. While case study does present some limitations in the ability to produce findings
which can be generalised, evidence suggests analytical generalisation can be obtained
through multiple-level data analysis (Yin, 2018). The emergent nature of qualitative
research makes it imperative to recognise the early patterns and themes in the data as
it is collected, and to acknowledge the researcher’s insights. Both factors may shape
the ongoing data collection while the researcher is still in the field (Patton, 2002).
Yin (2018) suggests four general strategies for analysing case study data: (a)
relying on theoretical propositions formed from the literature and the research
questions, (b) working the data from the “ground up” and looking for the patterns
within the data, (c) developing a case description from the data, and (d) examining
possible rival explanations from the data. Creswell (2013) also suggests analysing
case-study data in multiple ways, initially searching for the themes within the data and
situating this analysis within the existing knowledge arising from the literature.
Thematic analysis is a verified technique for data analysis in case-study research

(Patton, 2002; Vaismoradi, Turunen, & Bondas, 2013). Patton (2002) warns the
researcher to not only look for confirmatory evidence, but also to seek out alternative
explanations for the data. Patton (2002) describes the need to note analytical thoughts
throughout the data-collection process and to consider themes as they emerge. Other
researchers have identified this type of analysis as valid and robust (Payne et al., 2007;
Creswell, 2013). For this study see section 3.5.6 in which the data analysis in this study
is discussed.
3.4.9 Triangulation and Credibility in Case Study Design

The triangulation of data in case study is based on the collection of data from multiple
sources to examine multiple perspectives within the data (Patton, 2002). The multiple
sources of data, the case-study database, and maintaining the chain of evidence all
contribute to the credibility of a case study. Patton (2002, p. 248) asserts the aim of
multiple sources is not to convey consistency, but to actually “test for such
consistency”. The researchers’ reflections on interviews, along with field notes and
memos created in data analysis, allow the researcher to use reflexivity and to
conceptualise meanings from the data while examining the multiple perspectives
which exist. Patton (2002) stated the criteria for assessing the quality and credibility
of inquiry are rigorous methods in data collection, analysis and reporting; the
credibility of the researcher to expose all bias and factors affecting the research; and a
belief in the value that qualitative inquiry brings (Patton, 2002, p. 544). In case study,
a case description must be developed, and plausible rival explanations be considered
to encompass the findings. Accounting for all the evidence is essential, and cross-case
synthesis can assist in creating more robust findings and analytical rigor (Yin, 2018).
For this study see 3.5.4 for data collection methods, and Chapters 4 and 5 which
include the researchers ‘reflections. The final discussion, Chapter 6 includes the cross-
case analysis.
3.4.10 Conclusion to Part Three

Case study is a robust and valid methodology to support qualitative enquiry;
prominent researchers have verified its use and its benefits in investigating phenomena
(Creswell, 2013; Stake, 2006, Yin, 2018). Case study has been widely used in many
fields of research. Multiple case studies can provide compelling evidence. This design
is considered more robust than a single case study for replicating literal or theoretical
findings (Yin, 2018). Data collection in case study can employ suitable qualitative
methods such as interviews, focus groups, written narratives, reflections, and field
notes. The use of multiple sources assists in creating valid data and contributes to the
case-study database. The chain of evidence in case study is maintained by judicious
processes of managing the data and the data analysis, and by keeping memos and
records of the analysis throughout. Part four of this chapter will now consider the way
in which case study design was applied to this study and meets the requirements for a
robust study using an embedded multiple case study design.
3.5 PART FOUR: CASE DESCRIPTION
3.5.1 Introduction
This research examined the experience of moral distress using two MDTs
providing EoL care as the cases. These MDTs were a renal team providing care to
patients with end-stage renal disease, and a palliative care team providing inpatient
care and community services as an integrated team.
The following case description for this study entails
• identifying the cases
• recruitment of participants
• data-collection methods
• data-analysis methods
• limitations of the study
• ethical considerations for the study.
3.5.2 Identifying the Cases

The two teams for this research were selected from the local health and hospital
service in a purposive manner. They met the inclusion criterion of MDTs responsible
for providing EoL care to patients. The teams were selected for “maximum variation
sampling” (Creswell, 2013, p. 156). This purposive sampling method considers the
differences between sites or participants to maximise differences within the data
collected. These distinctive care settings were considered vital to achieve a range of
perspectives on moral distress in providing EoL care. Within the two MDTs that
participated in this research, the range of health disciplines included nursing, medicine,
and allied health. Both MDTs provided care at EoL and the contexts were varied to
achieve some variation in the data collection.
Case One comprised multidisciplinary participants employed in a renal service

providing care to clients with end-stage renal disease. The service included an inpatient
renal dialysis unit, the community services providing in-home care, and the client
education unit. Renal dialysis is a medical treatment whereby patients who are in end
stage renal failure are treated with dialysis. This involves connecting the patient to a
dialysis machine for three sessions a week, totalling twenty hours. The patient can do
this in hospital or at home with a fitted machine. The choice of treatment depends on
the patient capabilities and the patient, family and medical decisions. The patient will
need a surgical procedure to prepare for dialysis treatment which may include the
insertion of a specially designed dialysis catheter or the creation of an arteriovenous
fistula in their arm. All members of the team were provided the opportunity to
participate in the research and participants included were three consultant
nephrologists, five registered nurses and two allied health professionals. Their level of
experience ranged from 17 to 38 years within the profession, and their years of
experience within this team were between 6 and 24 years (Table 3.1).
Table 3.1 Case One Participants
Profession Years in profession Length of time in team (years)
Nephrologist 17 6
Nephrologist 25 10
Nephrologist 23 14
Allied health 26 7
Allied health 20 15
Clinical nurse 38 24
Registered nurse 25 10
Total participants = 10
Case Two comprised multidisciplinary participants from an integrated palliative
care team. Its community-based service and inpatient palliative care unit together
formed one team. The community group provided in-home palliative care services to
clients through home visits and telephone liaison. The inpatient unit provided palliative
care to clients who were close to EoL and a respite service for EoL patients. All
members of the team were provided the opportunity to participate in the research and
participants included one medical consultant, seven registered and enrolled nurses, and
two allied health professionals. This diversity of professionals contributed to the
variation sampling required. The number of participants in each case was guided by
qualitative methodology and the data-analysis process. The level of experience in this
cohort was 8 to 40 years in the profession, and between 3 and 7 years within this team
(Table 3.2).
Table 3.2 Case Two Participants
Profession Years in profession Length of time in team (years)
Consultant 39 7
Nurse practitioner 10 7
Allied health 32 7
Allied health 22 4
Clinical nurse 33 7
Clinical nurse 32 3
Clinical nurse 42 7
Enrolled nurse 40 7
Enrolled nurse 8 7
Total participants = 10
Recruitment continued until no new themes emerged in the interviews. In both
teams, ten individual interviews and one focus group were used to collect a range of
views and rich data to constitute the case, and to create the analytical generalisations
recommended by Yin (2018).
The schematic representation in Figure 3.2 provides a visual map for this study.
Although schematics can be reductionist in nature, they can also provide clarity in the
research process (Rosenberg & Yates, 2007).
Figure 3.2 Diagrammatic representation of this study (Adapted from Rosenberg & Yates, 2007).
3.5.3 Recruitment of Participants

Recruitment of participants occurred through contact with the health service.
Initial contact was made with the senior medical, allied health and nursing executives
to discuss the research within the health service. The ethics approval process
necessitated discussion of the research with the selected departments, potential teams,
and stakeholders. This allowed a rapport to develop with the key personnel and for
discussions to occur on the suitable recruitment of participants. Information sheets
were left with key people, who distributed these among the team. From this process
participants contacted the researcher and interviews were arranged.
As interviews began, other participants contacted the researcher and expressed

interest in participating as they had heard about the study from their colleagues. A
revisit to sites assisted in locating more participants as the study progressed. Arranging
individual interviews was more practical than focus groups; the final focus groups for
Case One and Case Two contained only two and three participants, respectively.
Recruitment continued throughout the research until enough participants provided
thick description for the case. The themes began to emerge after the interviews, and I
continued to both explore these themes and identify further themes.
3.5.4 Data Collection

Data collection began in April 2016 and continued until January 2017. Methods
used were face-to-face individual interviews, focus groups, one written reflection, and
researcher field notes and reflective journaling throughout the process. Interview
questions were designed by the researcher in consultation with the supervision team
and informed by the literature. These questions were used to guide both the interviews
and focus groups, and are included in Appendix B.
3.5.4.1 Semi-Structured Interviews

Semi-structured interviews were conducted with the aim being to gain an
understanding of participants’ views on their moral-distress experience within the team
in caring for EoL patients. In total, 20 individual interviews were conducted at times
suitable to the participants. Eighteen interviews were conducted at the working
environments of the participants and two interviews were conducted in the
participants’ own homes. Interviews lasted from 35 to 60 minutes and included the
gaining of written consent. Basic demographic data on participants was collected
during the interviews to document the different professions and levels of experience
of the participants within each case. Interviews were audio-recorded, and field notes
were taken to record important reflections, comments, and participant reactions during
the interviews. After the interviews, participants were thanked for their time.
Recordings enabled me to consider the story after the interview as told by the
informant in their words. Appendix B contains the questions used to guide the
interviews.
The interviews were transcribed verbatim and uploaded into the secure database.
Immediately after each interview, I recorded my reflections in detail and examined
more closely any biases and opinions formed during the interview. This step supported
the reflexive process, which contributed to the validity of the study and aligned with
the interpretive approach. These reflections formed part of the case-study database.
After the individual interviews in the case were completed and thematic analysis had
begun, the case focus group was conducted to consider further evidence.
3.5.4.2 Focus Groups

Focus groups were employed to bring together members of the MDT from the
individual interviews to consider the themes emerging from the data collection. Two
small focus groups were conducted during the data-collection phase. These groups
were convened after the individual interviews for each MDT (case). One focus group
was conducted after the interviews with the first MDT members, but attendance was
limited to one consultant and one clinical nurse. A second focus group was scheduled
but none of the MDT members were able to attend. The main reason given related to
the high workloads of the health professionals at this time due to the expansion of
services. The focus group for the second case comprised three nurses, 2 enrolled nurses
and 1 registered nurse. Despite the difficulties with conducting the focus groups, there
was robust discussion within each group, which contributed to the data collection.
The focus groups were conducted in a room at the participants’ workplaces for
their convenience. In the first focus group, a second, more experienced member of the
research team was present to assist in data collection. This person conducted the audio
recording, facilitated note taking, and contributed to the questions. Initial questions
were formulated from the previous individual interviews and the initial data analysis,
with the aim of identifying areas of both consensus and conflict in the team experience
of moral distress. Confirmatory and contradictory evidence were sought from the
initial data to create deeper understanding of the beliefs and attitudes of the participants
about moral distress. These data contributed further discussion to the overall data
collected. The final method of data collection was to obtain any further written
narratives from the participants.
3.5.4.3 Written Narratives

Research participants were invited to record reflections on examples of
situations in which they experienced team moral distress while providing EoL care.
After the initial interviews I encouraged each participant to consider writing a narrative
about or providing commentary on other experiences of the moral-distress
phenomenon within the team setting. Several participants indicated they would
consider doing this; however, only one participant followed through. I had anticipated
this source of data might be limited but included it as an option for participants. The
one reflective narrative was included in the data analysis and provided some thoughtful
insights that were not disclosed during the interview with this participant.
3.5.4.4 Reflective Journaling and Field Notes

During the interviews, I made field notes to assist in my reflective journaling
after each interview. I also recorded ideas and points for further discussion during the
subsequent interviews. This reflective journaling was completed shortly after each
interview and continued throughout the data-analysis process. This allowed me to
record my thoughts and ideas and to explore biases I encountered during the process.
These reflections formed part of the data analysis.
In summary, the data collected for this research comprised 20 individual

interviews, two focus groups, one written narrative and, in keeping with case-study
design, my own written reflections and field notes. These data were then transcribed
and uploaded to the case-study database on a secure, password-protected research
drive in accordance with the ethical approval process. Policies of the University of the
Sunshine Coast regarding the safe storage of data and the National Statement on
Ethical Conduct in Human Research (2007, updated 2018) of the National Health and
Medical Research Council (NHMRC) were complied with. The ethical considerations
are discussed in Section 3.28.
3.5.5 Data Management

The data from the individual interviews and focus groups were transcribed
verbatim and then checked against the recordings for accuracy. All identifying details
of the participants were removed during this process. As the researcher I transcribed
several of the interviews and then employed a transcription service to complete the
process. Transcripts were uploaded to NVivo (Version 10, 2014). This software was
used to assist in data management and initial coding. Through this process of
transcribing, listening to the interviews, and reading through the transcripts multiple
times, themes and patterns began to emerge.
3.5.6 Data Analysis
This research employed an embedded design (Yin, 2018), in which the data
analysis occurs at more than one level (Figure 3.3). In this research, the levels were
the individual health practitioners, the teams, and cross-case analysis of the two teams.
Cross-case Between
analysis cases
Analysis within
cases Case One Case Two
Analysis of
individual data Team Team
transcripts members members
Figure 3.3 Embedded multiple case study design.
Data analysis began with the first interview and continued throughout the data-
collection and analysis phases. As I was interviewing each team of participants, I was
mindful of the limited participants for each case. Hence, these analytical insights were
important as the data collection progressed. Initially, I worked on the data from the
renal team only. The data were useful to construct visual diagrams and concept maps
of the emerging themes within the case. While listening to the recordings, I made notes
for each of the interviews. I examined my own thoughts and biases during this process.
The importance of capturing multiple perspectives rather than a singular view was
critical to ensure data quality. Patton (2002) confirms that understanding specific
views about a phenomenon is critical and avoiding generalisations ensures
trustworthiness and authority in the data and allows for triangulation. Reflexivity of
my own participation in the research was considered critical to examine my own biases
and thoughts throughout the analysis. These thoughts were recorded and form part of
the case study database. Patton (2002 asserts that understanding one’s own experience,
background and perspectives is critical in research using a social constructivism
paradigm to support the quality of data analysis.
I was consistently aware of the empathy shown in the stories as I listened and
reflected. I was also aware of distancing myself at times from the story and reflective
about not connecting my own emotions with the story told. Concept maps were used
and discussed with the supervision team to support the analysis of the data, constantly
going back and forth to the ideas and findings emerging from the data. Robust
discussion enabled the examination of data during data collection and data analysis
phases. Data was not taken back to the participants in this case. This was discussed
with the supervisors and not considered necessary in this case. Constantly reviewing
my own biases enabled me to look for other explanations within the data.
The NVivo software was employed to examine the transcripts and complete
initial coding (NVivo, Version 10, 2014). As data analysis continued, I began to recode
as my thinking progressed and further analysis occurred. I refined the themes,
continuing back and forth until I had developed more graphical interpretations and
analysis. There were times when I immersed myself in the data and times when I
allowed a distance to consider and reflect on the emerging themes. This process
occurred over more than a year; at times I came back to the data with what I felt were
fresh eyes, viewing it as though for the first time. Patton (2002) stated data analysis
requires analytical rigor; distancing oneself from the data allows this process to occur.
The interaction with the data and the making of notes allowed me to recognise the
different perspectives within the data. Further discussion occurred throughout this
period with the supervision team to interrogate my thinking and analysis. Patton (2002)
identified this as acknowledging subjectivity as this contributes to robust analysis and
improves the validity of findings.
As I continued to explore the data and analyse my own field notes and
reflections, I began to refine the emerging themes. Clearer linkages began to develop
across the renal-team data. I now encountered the processes of critical analysis and
synthesis described by Morse and Field (1996). I began connecting the pieces of data
to themes and noticing missing pieces in the data, which I could then go looking for.
After this analysis of data from this MDT, I wrote the case findings. Data from Case
Two (the palliative care team) were then analysed using the same processes and NVivo
software.
The data from the two cases were then examined in a cross-case discussion (see
Chapter 6). This discussion was conducted with the aim to not only identify the
differences and similarities between the cases, but to critique the findings and
interrogate their importance in relation to the research question. In this process, I re-
examined the literature considering the new insights I had gained. I extended my
reading to include other literature relevant to my research and to search for rival and
contradictory findings. The aims of case study were maintained as I sought both literal
and theoretical replication of data and searched for analytical meaning in the data I had
obtained. This was a rewarding experience as new insights on the experiences of moral
distress in MDTs providing EoL care emerged.
3.5.7 Limitations
This study was carried out in a single health service in an Australian context.
The findings represent this context, which may differ from international contexts and,
potentially, other Australian contexts. The aim of the multiple case study design is to
achieve analytical generalisations across the cases. This study achieved this aim. The
study was also bonded to a time. Healthcare is a dynamic environment which moves
quickly; it evolves through new models of care and changing team compositions and
processes. This study provides a snapshot of the environment at the time of the
research.
Recruitment in this research provided some challenges. Interviewing every

healthcare professional within the services of interest as not feasible. Participation was
voluntary and affected by the time constraints of the professionals. The health service
was undergoing significant changes and relocating to a new site, which began to
increase the workloads of potential participants during the recruitment phase. It was
also difficult to achieve equal numbers of allied health and medical participants
compared with the number of nurses recruited. Nurses dominate the healthcare
workforce and teams inevitably contain more nurses than other health professionals. I
made every attempt to include a cross-section of professionals and was successful in
both cases. Of the participants included in this study, most had significant experience
in their field (8–42 years). This significant level of experience may have influenced
the data obtained. Unfortunately, I was unsuccessful in recruiting less experienced
team members. As the aim of case study is to achieve theoretical or literal replication,
obtaining a representative sample of experience levels was not considered essential.
3.5.8 Ethical Considerations
Ethical approval for this research was obtained through the Human Research
Ethics committees of the Queensland Health, Metro North Hospital and Health
Services, and the University of the Sunshine Coast. Site-specific ethical approval was
also obtained from the two sites within the health service. The guidelines of the
NHMRC National Statement on Ethical Conduct in Human Research (2007, updated
2018) were adhered to because this research involved human participants in the data-
collection phase. See Appendix C for copies of the ethical approvals.
Participants were recruited through the health service and provided with
information sheets on the research. The information sheet detailed the research aims
and gave information regarding participation, including the types of data to be
collected, the ability to withdraw from the research at any time, and how the data would
be used and stored (see Appendix D). Participation was voluntary and signed consent
for all aspects of the research was obtained from all participants. During the written
consent process at the start of each interview, the details about participation were
reiterated with each participant to check their understanding of the research integrity.
See Appendix E for a copy of the consent form.
The researcher always maintained the privacy of participants through the safe
storage of data in accordance with the policies of the University of the Sunshine Coast
and the NHMRC guidelines. The recordings of the interviews and focus groups, the
transcripts and the consent forms were uploaded to a secure research drive at the
University of the Sunshine Coast on a password-protected computer. De-identification
of data occurred during the transcription process and through my checking of the
transcriptions. A transcription service was used, with which confidentiality was
discussed. Files were sent to this service via an online file transfer system. All written
data from the research were kept secure in a locked filing cabinet. The participants
were given a unique identifier to protect their identity; this information was stored
separately from the data. At the conclusion of the study the data will be stored for 5
years in accordance with the policies of the University of the Sunshine Coast.
The emotional responses of participants during the interviews were also

considered during the ethical approval processes. Moral distress is a highly emotive
topic. During the interview process, several participants did explore narratives which
upset them. When this occurred, the interview was stopped, and the participant given
time to reflect; they were then asked if they wanted to continue. All such participants
did continue their interview. After the interview ended, we discussed their response
again. The researcher offered them a follow-up call and gave advice on where to seek
counselling if needed. The contact details of a qualified health professional for ongoing
support was offered. My professional experience as a nurse has enabled me to develop
skills in handling this type of situation, and I could talk easily to the participants about
their reactions. This professional experience certainly gave me confidence that
participants could verbalise their distress and their ability to cope with this distress.
3.5.9 Conclusion to Part Four

Part Four provided the case description for this multiple case study. Multiple
case study aims to use cases which will provide rich data. The purposive recruitment
of participants for the two cases was described. Data collection included twenty
individual interviews, two small focus groups, one written narrative, field notes and
researcher reflections, which align with the aim of using multiple data sources. The
data-analysis techniques were explained, along with the limitations and ethical
considerations of the research.
3.6 CONCLUSION TO CHAPTER THREE
The constructivist view seeks understanding of the world through allowing

individuals to explore their complex views on situations and to articulate the meaning
they attach to these. Through the research methodology, design and methods I used
this constructivist view to seek out meaning from participants’ experiences in
providing EoL care. The complexities of situations in which individuals experience
moral distress informed selection of a theory and design for this research.
In conducting this research, the theory of empathy and moral development was
used as a lens through which to view the experience of moral distress. The theory
provided insight into the way in which moral development occurs and the associated
prosocial motives and behaviours. This theory postulates that empathy is grounded in
individuals from their early experiences and contributes to the way they respond and
act in situations. This lens was applied to the health professionals’ experiences of
moral-distress situations within teams to explore possible further insights into this
phenomenon.
Multiple case study methodology was used, and two cases were chosen for the
research. This methodology was appropriate for the research question: What is the
experience of moral distress in multidisciplinary teams providing EoL care to
patients? The data-collection methods included individual interviews, focus groups,
written reflection, and the field notes and reflections of the researcher. A case-study
database and the chain-of-evidence principles recommended by Yin (2018) were
applied. Data analysis employed the principles of qualitative research. The research
complied with all aspects of the ethical approvals obtained for the study. The findings
from this research are presented in Chapters 4 and 5.
Chapter 4: Case One Findings
4.1 INTRODUCTION
This chapter details the findings from the first multidisciplinary team (MDT) of
participants, the renal team. Four main themes emerged from the data collected on this
team:
• moral distress emerging from end of life (EoL) decision making
• team communication and the contribution to moral distress in EoL
• moral distress experience, reaction, and strategies
• professional perspectives related to EoL and moral distress.
The EoL decision-making theme was important in the discussions within this
team and was based on the perspectives discussed by the healthcare professionals in
this study. The professionals disclosed the complexities of decision making as it
related to their own practice and how this impacted on patients and their families.
Decisions made by each professional had impacts on other professionals within the
MDT as well as effects on patients and their families and was found to contribute to
the moral distress experience for health professionals. This theme consisted of several
subthemes: uncertainty, changing decision pathways, the importance of quality of life,
and family participation within EoL decision making. Further subthemes focused on
the patient perspectives in decision making and these included the withdrawal of
treatment and legal responsibilities in decision making, and these were highlighted as
areas which contributed to the experience of moral distress.
Team communication was considered critical to the management of patients and

families in EoL care. Factors which promoted good communication practices were
team meetings and intentional communication, respect and support, and negotiation.
These practices supported the team and the safe and appropriate care of the patients.
Barriers to good communication were exclusion in communication, a lack of
negotiation, language and labelling, and poor communication with other treating
teams. These types of team communications could contribute to moral distress when
they inhibited good team relations.
The individual experience of moral distress and the responses to this
phenomenon were articulated as anger; feeling demoralised, tough, or uncomfortable;
confronting; and traumatic and causing distress. In response, a variety of adaptive
strategies were identified and used: peer support, rationalising and bracketing the
experience, using the experience to speak up, and, at times, taking a break from the
workforce. These experiences illustrated the ways in which professionals endure moral
distress and navigate the difficult clinical environments in which they work when
providing EoL care.
The final theme from the renal team was the different professional perspectives
arising from the three professional groups within this team. These groups were the
allied-health professionals, nursing professionals, and medical professionals. Each
group had unique ways in which members viewed situations that contributed to moral
distress; for example, using a patient-centred approach, being very close to patients,
and understanding the legal and resource constraints of the environment in which EoL
care was provided.
4.2 THEME ONE: MORAL DISTRESS EMERGING IN EOL DECISION

MAKING
4.2.1 Introduction
The process and difficulty of EoL decision making was forefront in many of the
experiences articulated by the participants in the renal team. EoL decision making in
in relation to patient care was complex and clouded by a range of factors individual to
each situation and patient. EoL decision making was described as “grey” and “never
black and white”, by professionals and the decision pathway for patient care could be
altered by professionals as patients experienced treatments, and prognoses changed.
This led to tensions within the decision-making process in the MDT. In addition, EoL
decision making for patient care involved the participation of families. This
participation often contributed to situations which created moral distress within the
team. The final subthemes in this section examine decision making from the patient
perspective and included patient autonomy and the withdrawal of treatment. Legal
responsibilities regarding decision making are discussed by the healthcare
professionals.
The subthemes in EoL decision making discussed here are
• EoL decision making and uncertainty
• EoL decision making and the impact of changing the decision pathway
• EoL decision making and the importance of quality of life
• EoL decision making and family participation
• EoL decision making and patient autonomy
• EoL decision making and withdrawal of treatment
• EoL decision making and legal responsibility.
4.2.2 EoL Decision Making and Uncertainty

Difficulty in making EoL decisions involved a myriad of factors. Decision
making was described as “grey” and “never black and white” and an “art” (P11).
Participants often found making decisions challenging because no two patients were
ever the same.
We’re in a position … I experience it this way anyway … of it’s never black and
white to me. It is always grey and there is a lot of moral distress. I just had one
yesterday. There are a number of paths you can take and with a crystal ball, you
can choose them. I find it very difficult to sometimes have a clear decision on that
stuff. That is my own internal moral distress. (P11, doctor)
This grey decision making was reflected when decision pathways were
uncertain, which ultimately contributed to the experience of moral distress for
participants. The decision making was difficult because the decision to stop dialysis
would result in the EoL for the patient.
So, they stop dialysis and they’re dead within a week or two weeks. I said that’s
very hard for someone to make that decision. It is not an easy choice and it is very
hard for a doctor to say I am deeming your quality of life isn’t good enough and
you’re draining our health system, so you need to stop now. They wouldn’t do it.
They don’t do it. (P1, allied health)
Part of the art in decision making was to work with the delays which occurred
when the decisions to be made were arduous and involved working with the patient,
the family, or both, toward the decisions.
Decision making was sometimes delayed because it was difficult and processes
for the decisions to be made took time. When a patient expressed the desire to
potentially stop treatment, there was often a delay in communications with the patient.
The delay resulted in the patient continuing dialysis and the participants’ experience
of moral distress.
Once they get to a ripe old age and they’ve been coming to dialysis for twenty
years, three days a week, and have decided enough is enough. It might not be
direct like I want to stop treatment, but it will be I’ve had enough of this. I’ve had
enough of coming in and I’m sick of dialysing. It might just be that sort of
conversation that you might delve into a bit further. Then you’ll take it to the
doctors. Usually the first time they won’t do anything about it. (P5, nurse)
The decision making for stopping treatment often began when the patient
expressed the desire to stop. Delay occurred when there was a need to get all the family
together.
It can do, because by the time they have the family meeting, it can take a couple
of weeks really, until you can get family in. Everyone needs to be there at the one
time convenient for everybody to meet. Ideally for us, they organise a family
meeting in a couple of days and hopefully by the end of the week they’re going
palliative. That’s an ideal world, where they maybe come back for one dialysis
and that’s it. (P5, nurse)
In summary, the family were usually a part of the decision making and needed
to be included when patients wanted to cease their treatment and choose a palliative
pathway. The decision-making processes were complicated and grey. Each patient
situation was different, and many factors influenced the decision making, including
the family, the patient, and the healthcare team. Decision making was an evolving
process and could be delayed or changed during the patient’s care.
4.2.3 EoL Decision Making and the Impact of Changing the Decision Pathway
Participants described how decision pathways were often changed by the
medical professionals or the patient as their disease progressed.
I guess the other thing to look at beyond that, is the consequences or the cost of
diverting from that path. So once you’ve chosen a path, whether that be the right
or wrong path – let me hope it’s the right one – but then the cost of changing that
path either way, saying you’ve decided to survive and now we’re going to die or
the other way around … we decided that we were going to be conservative and
now we’re going to be aggressive … has got all these runoff impacts on not only
your team, but the patient and their family and all these other things and the trust
relationship within whatever. If you’ve got members of the team who are
conflicted, then that can compound all of that I suppose. (P11, doctor)
These changes then affected the team providing the care. An adjustment process
continually occurred in these situations. Patients might decide to discontinue treatment
but then change this decision path and continue with their treatment. One participant
articulated how it was difficult to understand the decision pathway made by a patient.
The next day she changed her mind and came back and started dialysis again.
Some of that is experience, I think. Some of that I think is what I have been
through in the past. She’s young but she has also made a decision and we have to
respect her decision as well. It’s not maybe the decision that we might make, but
it is the decision that she has made, and we need to respect that decision, not
unlike that forty-year-old. I don’t think it was that I didn’t respect the decision. I
couldn’t understand the decision. (P9, doctor)
This change in decision by the patient contributed to the moral distress

experience. Pathways of care could also be changed by the MDT. This doctor
identified that their recent experience may influence decisions:
Well, okay, having had experience … I think I might oscillate. You have a
situation where you have a really, like the guy with the gangrenous foot where
things are uncomfortable for him, so the next time this might happen I would be
really focused and you would say … well not good enough. Then next time it
might be fine and I might relax again, and the next time it you know, so with EoL
stuff, you might have some really awesome deaths, beautiful, just how it should
be ones; and then you have some bad ones and that might sway. (P8, doctor)
At times the pathway to the decision making was obvious to the MDT; however,
the patient may not have arrived at the same point and may have been unable to decide
about their EoL care. Treatment continued until the patient was able to decide or other
medical events changed the pathway of the decision.
[the patient was] unwell, and no blood pressure and I told the nurses don’t take
his blood pressure, because every time they take it, they ring me up and say he’s
got no blood pressure. And [he] had this big hole in his buttock; and the nurse
one time when they were doing his dressings said they could put their hand from
the back, like all the way through. And every time I talked to him, I wanted him
to find a place where he was okay to stop, but he just never quite. (P7, doctor)
Another participant said:
We had a gentleman die last week that has been with us ever since I have been
here … seven years. He has been on home oxygen for maybe two years now. He
can barely breathe in dialysis. He would be there gasping for air for the last six
months. He had a lung mass as well. Yeah, nearly every shift I’d hear them [the
team] go “Oh my God, when is he going to stop?” I’d had lots of discussions with
him and the family. His religious beliefs were something that was really strong,
and he felt it was suicide to stop dialysis, no matter that we got the pastor in. (P1,
allied health)
In summary, the impact of the changes in EoL decision making contributed to

the experience of moral distress for individual team members. Ongoing suffering and
the burden of disease and treatments for patients was visible and acknowledged. In
these situations, participants wanted the patient to stop treatment to end their suffering;
however, the decision-making pathway for the patient was difficult and prolonged.
The common perspective expressed by the participants in these situations was a focus
on patients’ quality of life.
4.2.4 EoL Decision Making and the Importance of Quality of Life

The quality of life of the patient was obviously a major concern when EoL
decisions were considered (P7, P3, P8). Conversations with patients showed an
honesty about the reality of their condition and prognosis.
I always tell them when they start, dialysis is an extraordinary treatment and we
do it for quality of life when nature has already taken its course. According to
nature, if we left nature alone, you’re gone, you’re done, and you’re dead. Instead
we’ve got these treatments we can do, these extraordinary things, and they are
not easy, and they have complications, and they are hard work and we do it for
quality of life. But you know I am not the judge of how you assess your quality
of your life, so and then I say we do it for quality of life, and if you get to a point
where the quality of life isn’t worth doing this, then just come and tell me and we
will look at what the options are. (P7, doctor)
And,
In dialysis the main role for me and our patients is quality of life, not quantity.
That is definitely something that you see all the time and is expressed to you with
your patients year after year. There is no point going on if their existence is
miserable and they can’t do anything that they’d like to do. They’d rather not.
(P3, nurse)
The approach to treatment also gave patients their choice in maintaining their
quality of life.
I guess my approach is, and I know not everybody approaches it this way, my
approach is that we are giving you dialysis for you, and your quality of life, and
if, it’s not a binding document that you are never ever allowed to stop. You never
had to start in the first place if you didn’t want to. So, if you get to the point where
it’s not giving you the quality of life that you want, then we can talk about
stopping. (P8, doctor)
Concern was expressed when the doctor witnessed a patient’s deteriorating

quality of life and the decision making was complicated by the carer.
Whilst she was very much giving one hundred per cent effort to care for him, she
couldn’t see that his quality of life was non-existent. An example was that he
came to clinic to see me. He sat in his wheelchair and made no communication
the entire time. She did the talking, saying how she thought he was doing quite
well at home. His only statement in the whole clinic was I just shit myself. That
was the extent of his communication. (P8, doctor)
Distress for the patient in this situation was articulated. Other patients appeared
to maintain what the participants viewed as a good quality of life (P1, P3). There was
no mention of moral distress when patients were functioning well and appeared to have
a good quality of life.
We had a gentleman who started two years ago, and he was 88. He’s just had his
90th birthday with us. He still lives independently and drives. He’s amazing. We
really look at their quality of life, what their comorbidities are, how they function.
(P1, allied health)
And,
To see them in their home environment still living their life – the whole reason
to dialyse is to continue to live. Quality of life is the most important thing. (P3,
nurse)
The quality of life for patients was affected by the time commitment necessary
for their dialysis treatment. This included three days a week of treatment, up to 20
hours a week.
Then the nephrologist and their CKD [chronic kidney disease] nurse will allow
them to make that decision ultimately – just explain to them what dialysis is like
for someone normally who doesn’t have a strong quality of life first. It normally
doesn’t improve their quality of life. It normally worsens it. Three days a week
of having to come here because they wouldn’t be a home patient is tiresome. (P1,
allied health)
In summary, quality of life was highly valued in this MDT and was viewed as
critical in the decision-making process for patients (P1, P3, P7, P8). When patients
experienced poor quality of life with ongoing pain and suffering, the participant
questioned the patient’s decision to continue treatment. The participant expressed the
impact of this decision on them and its contribution to moral distress in situations in
which they believed the patient should stop treatment. The patient decisions were often
heavily influenced by the family members, which was a major area discussed in the
interviews in this MDT.
4.2.5 EoL Decision Making and Family Participation

Almost all participants in this case stated that family participation in the EoL
decision making was important. However, family participation was a contributing
factor to the moral-distress experience in this team because they witnessed situations
in which patients were suffering. Family influence was evident when
• families wanted patient treatment to continue
• families laid blame on the team
• family dynamics contributed to difficult situations
• families needed more time for decision making
• family participation impacted patient autonomy.
4.2.5.1 Family Wanting Treatment to Continue

Family participation in decision making was integral when the family wanted
treatment to continue, even if the patient did not want this.
She oscillated between wanting to continue and wanting to stop. She’s dying and
in just horrible pain. She is screaming out in pain all the time. The daughter is
distressed but she doesn’t really want to leave the daughter. That is the problem.
The daughter doesn’t want her to suffer and the mum doesn’t want to leave the
daughter. She doesn’t even know what she wants. That is the tricky thing. (P11,
doctor)
Participants (P11, P3) witnessed the pressure on patients when family members
were pushing the patient to accept treatments. This participant empathised with the
patient in this situation and felt a closeness to the patient:
Yes, you’ve come to a dilemma where you maybe because you’re the patient
advocate or you understand the patient really closely, about what they do and do
not want. Maybe the family members around them are pushing to have a
particular type of treatment. You know they are only going along with the family
because they are pressured to or because they feel they have to, but it is not really
what the patient wants when it comes to the time of them dying or winding down.
You would feel that you’d like to be the patient’s advocate and try to push their
opinion to the family and make it quite clear that this is really what they want.
(P3, nurse)
Participants recognised the patient felt “torn” between what they wanted and
what their family wanted. Not always being able to fully support patients’ decisions
contributed to what this participant described as “agonising”:
No, you can’t go, you have to stay. That is agonising to watch. That person just
can’t do anymore. So, they are torn with what they really need to do and what
their loved one wants them to do. It’s this terrible conflict at the last moment of
their life. If everybody is on the same page and is supportive of that, it seems to
happen a lot nicer. (FG1, doctor)
Although participants considered what the patient wanted, family could appear
to override this and consensus between family members was needed for the decisions
to be implemented.
We’ve had a couple recently who ….one in particular had expressed to withdraw
from treatment. Because the granddaughter didn’t think that was the right
decision, we continued to dialyse. The daughter wanted to stop dialysing. I think
that is where the doctors need to come in and go, well, it is probably the right
decision. They do not … We have patients that want to withdraw that I think
dialyse for one or two weeks longer because no-one lets them make that decision.
(P5, nurse)
When situations included younger family members who were patients, decision
making often included parents.
She was dying. Her body was rotting, and she wanted to call it quits. She’d had
enough and she didn’t want to keep coming to dialysis. Her father was making
her. No, no, you’ve got to do it! She had fluid leaking out of her body and she
was a big mess. (P3, nurse)
The patient had accepted their prognosis and recognised decisions could be made
to stop dialysis treatment. However, the family still wanted the patient to continue
treatment (P1, P3).
In their 80s, most of them think, I’ve had a pretty good innings here. I’ve made it
to my 80s and do I really want to go on dialysis now to live that bit longer. We
find that their family members often are pushing for them to do anything to stay
alive longer. (P1, allied health)
Patient suffering was clearly identified in several situations in which the patient
wanted to stop treatment. The participant recognised what the patient wanted and
supported this; consequently, they experienced moral distress when the families sought
treatment to continue. One nurse described the patient suffering as “torture” (P6).
The one that stands out to me as being particularly distressing was an elderly man.
When I say elderly, I think he was late sixties. He had amputations. He came in
with one leg and then came in with no legs, then came in with one arm, yeah just
progressively being amputated of necrotic limbs. He ended up being … he
couldn’t be cared for because he was a hoist lift. She didn’t have a hoist. She was
insistent on keeping him at home. He came in fluid overloaded with litres of fluid
on. There was a junior registrar who had no idea. They said to dialyse this patient.
He’s got no blood pressure because he’s nearly dead with the one limb, with ten
litres on. Sixty on forty blood pressure … dialyse him. How am I going to dialyse
that? As soon as the blood runs out into the thing [dialysis machine] their blood
pressure drops. So, lay him down, but he can’t breathe lying down. You sit him
up. He’s taking his mask off saying, please, I want to die; help me, I am dying.
So, yeah, it was very distressing. His wife was at home and said, no, I want him
to live, so you must dialyse him. I was so angry, I wanted to leave. I was so angry.
We tortured that man to death. I will never forget that. We tortured that man to
death. (P6, nurse)
Suffering was also considered when the patient was unable to verbalise their
pain.
I have a dialysis patient who has been on dialysis for some time. She is a young
woman who had a disabling stroke, mental-health issues, and starting her on
dialysis was distressing in the first place because there was no way to assess
whether it was what she would want. She has got no ability to communicate, but
she has young children, and her husband was adamant that we try. So, I said that’s
fine. I said to him at the time, to her daughter who is her main carer, did not want
her to start, felt that it was cruel. It was a tricky situation. I said to the husband,
that if there was any sign at all that we are making her suffer then we would be
stopping. That was years ago, and interestingly her function improved, and she
got a bit better after starting. Anyway, she has been on now for all this time. She
had a fracture of the ankle a few weeks ago and she had ongoing pain, and now
she has a tib/fib [lower leg] fracture above the ankle fracture, and so now I am
starting to wonder how far we, we call suffering and what we don’t. (P8, doctor)
Another participant (P6) identified patient suffering and could not understand
why the family wanted the treatment to continue.
There’s a patient that … again another bright yellow patient … that had cancer
and was nearly dead … was so weak that could not respond and was on TPN
[total parenteral nutrition]. The family wanted to keep dialysing this person with
terminal cancer. Why? (P6, nurse)
The suffering of patients affected the participants involved in the care and
contributed to moral distress. These situations were vividly described. At times the
family showed more acceptance of the prognosis. The family knew the patient’s
disease was progressing, but it was the patient who wanted treatment to continue.
His family definitely knew that he was dying, but he still wanted dialysis and
wanted this and that. There was this conflict about what the patient wanted, what
reality was and what was probably going to be best in the long run. Basically, he
got moved and it was decided without any consultation with anybody from the
renal team. I had all these phone calls from the family members. I went to [visit
him] in the evening after work and spent the evening there with them and he
passed away that night. They were very distressed by the whole process. (P3,
nurse)
In this situation moral distress was experienced when the prognostic outcome
became obvious, but the patient did not accept their condition. The patient wanted to
continue treatment, but decisions were made to stop treatment and there was a lack of
clear communication with the family and patient (P3). There were other situations
described in which families wanted treatment to continue but the health professionals
considered the patient prognosis very poor. The family reaction in these situations was
to blame the participant, the health team, and the hospital.
4.2.5.2 Family Wanting Treatment to Continue and Laying Blame

Sometimes the family blamed the team for the prognosis of their family member
(P7). Families became aggressive when dealing with the potential loss of a family
member. Aggression was sometimes directed at the health team and became a source
of moral distress for participants.
Some family can be aggressive, yeah in a family meeting, someone we wanted to

stop, who was horribly unwell and the family were yelling at us in the meeting
and going on about how she was young and an out of hospital arrest, and she had
lost all her brain function and so she couldn’t actually function, she wasn’t
herself, she couldn’t talk, she couldn’t do anything. They tried for months and
she wasn’t getting any better, and they were yelling at me and that was a bit
confronting. I think in that situation it was really the wrong thing to do to continue
dialysis. When the patient wasn’t able to tell us what she wanted, because the
family had unrealistic ideas about things. I was a little bit distressed about that.
That’s probably the last time I have had a withdrawal question that I have had
some moral distress, where I felt it was morally wrong to dialyse someone who
didn’t have a say in whether they were dialysed or not, because her family are
nuts and unrealistic and think she is going to have the miracle, the miracle will
happen. (P7, doctor)
This doctor described another situation in which the family apportioned the
blame to the hospital when the patient outcome was poor. They could not accept the
prognosis and became aggressive toward the team (P7).
Yeah, well, we had family meeting after family meeting and sometimes you
would have a whole extended family sitting there going this is your fault and the
hospital screwed it up; and, you know, so there was a lot of angst from the family
about that. (P7, doctor)
The need to withdraw treatment for this patient was evident to the team. Moral
distress was experienced in these situations when the patient’s treatment continued.
The issue of difficult family dynamics further complicated some situations.
4.2.5.3 Family Dynamics in EoL Decision Making

Family dynamics contributed to difficult situations in EoL decision making
when not all family members could agree on decisions. This participant experienced
moral distress in this situation because they saw a patient’s treatment continue while
family situations were addressed:
Yes, there are a lot of dynamics in families as we know. You get just one person
that isn’t happy about the decision or you’re killing them, which we’ve had said
to us. If you don’t dialyse them, you’re killing them. That’s not a nice thing to
have said to you. We don’t take it literally but still … it’s not how the outcome
should be, it should be let them go palliative. (P5, nurse)
Family dynamics were relevant when it was unclear who possessed the overall
power in decision making. This participant highlighted moral distress in the treatment
of a patient when there was a conflict between what the patient wanted and what her
father wanted:
We would talk as you do and she was coming to the end of her life. She was only
a young woman. She basically decided she didn’t want any more. I had felt
comfortable she had explored all options and she made a very sensible decision
and had come to that decision in the proper manner. Her father – they had a very
unusual relationship … he was very pushy, no, no, no. You can’t stop and you
have to keep going. She was literally dying from the feet up and not going to be
dying in a pretty manner either. The specialist we had at the time was pressured,
I felt, by the father to push for dialysis, even though the patient was well and truly
of age and capable of making her decisions. I didn’t feel like they were listening
to her request and were influenced by the father. I couldn’t cannulate her and I
couldn’t put her on dialysis. I couldn’t do that to her. (P3, nurse)
Another nurse articulated this same case and how the doctors were pressured by
the father to continue treatment, which contributed to moral distress. While the
decision was the patient’s, the dynamics of the family influenced treatment decisions.
Participants recognised families are sometimes unable to accept the patient’s prognosis
and therefore want to make the decisions.
Many times, you’re there, you know … the patient has talked to you and you
know they’ve accepted their death. Death is coming and they have accepted it but
the family have not accepted it and they are fighting it and wanting the patient to
continue and want the patient to do that. You have to get to the point where you
have to try and get them to see that they are ready to go. They need to let them
go. (P3, nurse)
In summary, family dynamics influenced the EoL decision making. Several

participants identified the patient in the decision making, but they also recognised that
family influence was considerable (P3, P5, and P9). Some families need more time to
accept the patient’s prognosis and make decisions at EoL.
4.2.5.4 Family Needing More Time in EoL Decision Making

Family often needed more time to make decisions and to accept what the team
saw as a poor prognosis and inevitable outcome. In this case, it was important to
understand the experience from the family perspective because this was their first
encounter with a young family member dying.
I think what you do is you go it’s important for this family to take more time than
what they have currently got, so you can only seed the ideas in their mind and
hope that with a bit more time they will maybe start saying this is really
uncomfortable for her and she is not having a good time and maybe they will
come around to it more down the track. So, you know you come out [of a family
meeting] and say that was a disaster and went horribly wrong and we’re sorry,
sorry everybody, but we are continuing. We know it’s hard, she was faecally
soiling every dialysis run, so the dialysis nurses had to totally wash her down and
change her. So sorry, we tried and didn’t succeed. But you think maybe they just
need more time. So, I come around it and we get there in the end. (P7, doctor)
Another participant described the difficulty for the family in deciding, even
when the healthcare team considered the patient obviously needed to withdraw from
treatment (FG1). This delay in the decision led to the team needing to continue
treatment although they agreed it was not in the patient’s best interest. It was evident
the team were hopeful the decision would be made for the family by the patient’s
deterioration. These situations contributed to moral distress.
A lot of times it is because they can’t make the decision. They’re the ones who
turn around and say, okay, then it’s time to stop. They can’t make that decision.
Unfortunately, the way it is now, unless we’ve got clear guidelines, the doctor
can’t say, well, we can’t continue to dialyse you. We have a situation like that at
the moment. They keep hoping the wife is going to come to that point where she
can. Really, we’re hoping the big man upstairs steps in and something happens
to the patient that is not treatable, and the decision is then taken out of her hands.
(FG1, doctor)
In other situations, the family had come to terms with the patient prognosis and
the EoL decision making was considered easier. When agreement existed between the
patient, family, and the team, it was described as “a lot nicer”. Several participants
described these situations (P3, FG1).
If everybody is on the same page and are supportive of that, it seems to happen a
lot nicer. You can’t control that. But, yes, we do dialyse a lot of patients and I
think, why are we doing this? (FG1, nurse)
And,
The gentleman who died at home, which was lovely, and they withdrew treatment
and we had palliative care from the community come in. That was really lovely
and that worked out really nice. That family had accepted that was what was
happening; it was what the patient wanted. The community nurses … we had a
good GP, it was all organised through the GP. Our team knew what was
happening, we were kept informed, and we were visiting the patient still. That
was nice. (P3, nurse)
Sometimes, however, the patient had made a clear EoL decision but needed
assistance to broach this with the family.
4.2.6 EoL Decision Making and Patient Autonomy

While the EoL decision making was difficult for the patient, it often became
increasingly difficult for them to communicate their wishes to their family. Families
were dealing with feelings of loss and needed more time to make decisions and accept
prognostic outcomes. When the patient had made their decision, they needed support
from the MDT to discuss their decision with their family.
One participant described how they were able to assist the patient in dealing with
their family and saw this as part of their role as the patients advocate (P7).
You get an older woman, who is a mum who is ready to stop and then sometimes
her family aren’t ready for her to stop, and sometimes that patient isn’t strong
enough, or for various reasons doesn’t want to say to her family I want to stop …
because she doesn’t want the kids to think she is letting them down, and so
sometimes what you can do in that situation is remove some of that pressure off
the patient by talking about the medical reasons behind where you are at, so you
can actually be someone who can make it a bit easier for the patient. I could tell
it was taking the pressure off her from feeling like she had to explain that to them.
They were saying it’s hard for us to understand. I was yeah, it’s really hard to
understand, yeah if you’re not the person who has to do this every second day for
the entire rest of your life and do this and do that and do the others. It is hard to
understand why someone would want to stop. (P7, doctor)
Participant P2 described this process as “taking the patient with you” to highlight
how patients can be assisted through the decision-making process. This nurse
recognised their responsibility as a patient advocate to support the patient in decision
making.
There is that certain pull, but I think that you have to take the patient with you.
What has happened is that we get patients in hospital and their families are upset
and the patient isn’t able to verbalise to the family what their wishes are. That is
simply because it hasn’t been discussed as a whole, and my thing is I think that
the patient should be part of the decision making. (P2, nurse)
It was also recognised patients’ right to make decisions could be removed by the
MDT.
I’ve got a patient at the moment, which is probably why it is prominent in my

mind. That question of capacity … I find it a little bit morally distressing. Just in
taking away people’s rights. At what point is that necessary? I find in the medical
model it happens, I think, too easily. A geriatrician team come in and assess them
and decide that they haven’t got capacity to make their decisions anymore. We
need to either use our EPOA [Enduring Power of Attorney] for decision making
or go through the guardian and get the government body to be their decision
maker. Yeah, I find that really difficult. (P1, allied health)
The participant experienced this process as related to moral distress because they
could not be the patient advocate and did not see this removal of patient rights as
occurring at the right time for this patient (P1). The participant explained how these
patients can develop memory problems associated with their disease but felt that the
process of removing the patients’ rights was not always done in the correct way. In
another situation, the patient wanted decision making removed (FG1).
They [the patient] don’t want to make that decision at the end of their lives. They
want the doctor to make it, but they also want to keep their rights and keep control.
It is tricky. (FG1, doctor)
Each situation was very individual for patients and their families. That families
play an important role in EoL decision making was evident in almost all the interviews
in this team. These experiences resulted in situations in which moral distress was
experienced by members of this renal team.
4.2.7 EoL Decision Making and Withdrawal of Treatment

Although family were critical in decision making at EoL, there were decisions
faced by the patient. One of these decisions was the withdrawal from dialysis
treatment. Some patients did not have family structure supporting their decision
making, while others chose autonomy in making their decisions. Withdrawal from
dialysis treatment is an important decision for patients because it shortens their life.
Participants encountered this patient decision making in their practice in this team,
some decisions coming as a surprise (P4, P6).
She withdrew in the end. I never thought she would. She always talked about it.
I said she won’t withdraw, but she did. (P4, nurse)
And,
He was only in his fifties and it was out of the blue. It was out of the blue to go I
want to die and I don’t want to dialyse anymore. Often you see a slow decline or
long periods of suffering or you see lots of deterioration. There wasn’t that. There
was a lot of consideration on his part, of how he wanted to be and how he wanted
to live his life. (P6, nurse)
Participants were both surprised by patients’ decisions and shocked when the
patient did not want to continue with dialysis treatment for a longer period (P4, P6).
There were times when they supported the decisions made by patients to withdraw (P5
and P6).
They’d be transported three days a week by ambulance to dialysis. They have

been there long enough to see patients come from nursing homes with patient
transport. They get brought in at whatever time they arrive, sit around waiting to
get picked up and patients are aware of exactly what is going on in that unit.
Patients will say that’s not going to be me. I’m not going to be getting an
ambulance in here. If I can’t get in here, I won’t be coming. They say that. I totally
agree with them. They’re dragged in there three days a week with an ambulance
and that’s their whole day gone. It’s a daytrip for them. (P5, nurse)
These situations reflected the true burden of this disease on the patient. When
other patients witnessed these situations, they commented about how they would
withdraw from treatment if they could not access transport. At times nurses witnessed
patients making withdrawal decisions and supported these decisions (P6).
Sometimes they do just go, I’m just going to stop. You go, maybe you should talk
about that. The last one … yes, that is what he did, and he goes, oh, I’m going to
stop. He was young and in his fifties. He had hepatitis C, liver issues, heart was
stuffed, and they wanted to do an angio [angiogram] and replace valves or
something. He just said what for and felt terrible on PD [peritoneal dialysis] as
time went on. He said, I’ll stop treatment then. We said, well, that’s fine and that’s
your choice. How about we talk to palliative care and we come and see you and
talk with your family and support you through this, you can do it in a nice way
rather than just see you later. That was managed well. (P6, nurse)
The time taken for patients to reach decisions varied and participants recognised
the decision would often occur when the patient recognised the burden of disease and
its treatment had become too much for them to endure.
Well I think some people … because everybody is different, some people it’s
easy and they are already there, and other people aren’t. But you can’t force
someone to think something they are not ready to think, and I think that letting
go of that last little bit of life, especially withdrawing from dialysis, it’s such a
final thing to do. It’s such an impossible thing to ask somebody to agree to. You
can’t force that, they just have to say I’m tired, I’m done, I’m ready, and it’s over.
So you have [my patient] … who could keep going for another few years, who is
tired and done and over and is going to die in the next few days, and then you
have him, who six months ago probably we should have stopped. (P7, doctor)
The decision to withdraw treatment was sometimes delayed by the team (P5).
The patient would request less treatment time, which would ultimately contribute to
their death against their family’s wishes.
We have patients that want to withdraw that I think dialyse for one or two weeks
longer because no-one lets them make that decision. That is frustrating and that
is sad. They don’t want to be there and they’re asking to come off the machines.
They are doing two hours, so it is pointless anyway. (P5, nurse)
Denial of patient autonomy in making decisions contributed to moral distress for

members of the team. These team members felt the patients’ decisions were not always
respected. Sometimes, the participant encouraged the patient to consider their decision
to withdraw from treatment carefully.
Yeah. We had one recently, who was ninety. He had a urinary tract infection. He
was talking about withdrawing, only because he had bills at home, he was worried
about things and he was stressed. He’s normally a fit guy and walks in smiling. I
said don’t make that decision until you feel better, because I can’t get you back
once you’re gone. (P4, nurse)
The decision to stop dialysis treatment is a difficult decision because it means

the patient dies within a few days. Some patients made the decision earlier than the
health professionals expected; other patients and families needed more time for the
decision making. Decision-making processes reflected the complexity in this aspect of
EoL care. What was not entirely clear was whether the patient, family or the health
team held the responsibility for the decision making. Several participants articulated it
was the patient’s decision, but that family input could not be denied, and the input of
the health team was a contributing factor. This lack of clarity complicated the EoL
decision making and contributed to moral distress for individuals in the team. In
addition, participants found the legal responsibility for EoL decisions uncertain.
4.2.8 EoL Decision Making and Legal Responsibility

Evidence suggested medical staff were mainly responsible for making decisions
about a patient’s EoL care.
At the end of the day, the responsibility of the decision lies with the doctor. We
ask the nurses to go along with that decision. There are two sides to that. You’re
in the passive position of having to follow that path or fight it if you feel strongly.
(FG1, doctor)
And,
It’s not our place to make that decision. We’re just purely advisory, so we go and
give advice. At the end of the day, the client is in the care of the renal team and
the nephrologist has to make that call, based on the information that they are
given. At the end of the day, it is not our decision to make, whether or not to start
dialysis for a person. (P10, allied health)
The allied health professional and nursing participant here agreed the decision
making was the responsibility of the doctor:
I think that ultimately it is the doctor’s decision. When we talk about non-dialysis
versus dialysis with patients, we do discuss that. (P2, nurse)
Family influence was noted as important. When family insisted on treatment, the
doctor felt legally and ethically compelled to continue treatment. Participants
explained they felt “trapped” (FG1), “had nowhere to turn” (P9) and were
“uncomfortable” (P8) when family and carers insisted on treatment continuing. These
situations contributed to moral distress in the team.
Queensland is very unique in its laws too, which makes Queensland a unique
place to study something like this. The answers to all of this might be very
different elsewhere. In Queensland, legally there are legal limits to being able to
withhold and withdraw and all that sort of stuff. If they come back and say, if
they are completely demented and the daughter says dialysis, you’ve got to keep
them alive. We’re trapped. (FG1, doctor)
And,
We had nowhere to turn. All that could be done was to continue to communicate
to her about the impact this was having on his quality of life. Clearly, logical
arguments weren’t working with this woman. Logical facts weren’t working to
explain where we were headed. I was caught in a bind between doing something
that I clearly didn’t want to do, and something that she was insisting that I do. It
was tough. (P9, doctor)
The bind described here corresponds to moral distress: knowing a responsibility

to the patient exists but being unable to enact what one believes is in the best interests
of the patient. The need to embrace family participation in the decision making was
obvious.
The family would push for it and so if it was, and again I have been uncomfortable
with a lot of what we have done. If it was something reversible, that would be no
different to what we are doing now. If it was something that was going to be a
long-term worsening her disability, I would be very uncomfortable, and I would
probably have to run through it with the family. (P8, doctor)
The medical team played a large part in decision making for patients’ treatment
to continue or be withdrawn (P2, P8, P9, P10, FG1), but the family and patient were
critical influences. Legal considerations were important and contributed to the inherent
complexities in decision making and to the moral distress experienced within this
team.
4.2.9 Theme One Summary

Decision making at EoL is a complex art and was described as “grey” and “never
black and white”. Tensions exist around individual patient decision making and family
participation, the prognosis and progression of their disease, and the MDT involved in
their care. Decision-making pathways could change and the decisions to withdraw
treatment were often faced by patients with end-stage renal disease. Changes to
decisions have subsequent effects on the MDT and the experience of moral distress.
Participants viewed patients’ quality of life as critical. Moral distress arose when
participants saw patients as having poor quality of life due to both their disease and
their treatments.
Family participation in EoL decision making was discussed widely in this team.
Clearly this was an important factor in providing care and treatment. Families often
wanted patients to continue treatment, despite the contrary wishes of the patient.
Families blamed the MDT and participants when the prognosis and outcome was not
what they expected. Family dynamics presented issues which influenced EoL
decisions and had impacts on the MDT. Families sometimes needed more time to
understand and accept the poor prognosis of the patient and for EoL decision making
to occur. This delay in decision making resulted in moral distress for participants who
needed to provide ongoing treatment with which they did not agree.
Patient autonomy and the right to make their EoL decisions were not always
respected. Patients sometimes needed the support of the MDT when making decisions
and dealing with their family, particularly their decision to withdraw from treatment,
which the family could prevent. Legal ramifications of decision making were
highlighted; participants recognised the responsibility of medical professionals here,
but also the influence of patient and family input.
In conclusion, EoL decision making involved many factors but, importantly,
participants believed the family heavily influenced decision making. The complexities
of EoL decision making contributed to situations in which moral distress was
experienced by members of this team. The way the team communicated and
collaborated during patient care, and its relationship with moral distress, is discussed
under Theme Two.
4.3 THEME TWO: TEAM COMMUNICATION AND THE

CONTRIBUTION TO MORAL DISTRESS IN EOL CARE
4.3.1 Introduction
Team communication was identified as critical to the management of patients in
the EoL context. There were enablers and barriers to team communication.
Enablers included:
• the value of team meetings and intentional communication
• the value of respect and support within the team
• the value of negotiation within the team.
Barriers included:
• exclusion from team communication
• lack of negotiation in team communication
• the language and labelling used in team communication
• poor communication with other treating teams.
These factors in team communication could support the MDT and reduce moral
distress or contribute to moral distress within the MDT.
4.3.2 Enablers to Team Communication

4.3.2.1 The Value of Team Meetings and Intentional Communication
Participants spoke positively about the value of MDT meetings (P2, P9 and P3).
They viewed meetings as a sharing of knowledge and a seeking of support on patient
care plans and goals of management. Decision making in these meetings was identified
as collaborative and the meetings gave opportunities to raise concerns about a patient’s
care. This participant highlighted these intentional communications were important in
preventing moral distress because they could share their views (P3).
Everybody has their say. If they’ve got a particular problem with one of the home
patients or PD [peritoneal dialysis] patients, then that would be brought up at the
meetings. (P3, nurse)
These meetings were also considered a “safe space” (P2) in which team members
felt comfortable to raise concerns. Meetings were attended by several nurses and allied
health professionals and the nephrologist.
I think that with time, the patient care plan meetings have become a bit of a safe
space. There are no egos because there is not another nephrologist in the room.
It’s true they do behave differently when they are together, rather than when they
are alone. It works for us, because everyone can be free about what they say, and
it is quite a safe space. (P2 nurse)
One participant emphasised the importance of showing respect for the opinions
of others in meetings (P9). Meetings were also recognised as a learning process for
junior staff to share their views.
I think people have their say. I think one thing we always need to make certain of
is that we respect the opinions of other people within the team. I hope, but I can’t
guarantee that more junior staff, particularly non-medical junior staff, feel their
opinions are respected. Often it is that a case might be discussed like this and
people might turn to me and say, what do you simply think and what’s your
opinion, simply because I’ve got the most experience. I would hope that the junior
staff, from whatever stream, feel they could make their thoughts or opinions
heard, not only because their thoughts and opinions may be of and probably are
of value, and will add something that others may not think of, but equally will be
part of an important learning process for them. (P9 doctor)
Sharing knowledge on patient decisions was highly important to gain support for
decisions made and to assist in understanding these decisions. Meetings gave the team
an opportunity to discuss patients and share knowledge.
I think that would help with moral distress because you share. You’ve come to
that decision and you think is it the right decision. We’re talking big decisions,
so if you discuss it with other members of the team and banter around and make
sure everybody is on the same page, it makes it easier for you to make that
decision because you’ve got the team support and colleagues. (FG1 doctor)
Participants viewed team meetings in a positive light (P2, P3 P9). A critical
factor was the safe space which allowed everyone to voice their concerns and to
support and understand decisions made. Participants identified these meetings as an
important way to prevent moral distress within the team because they developed a
shared understanding and a level of respect and support for other team members.
4.3.2.2 The Value of Respect and Support within the Team

Respect and support within the team were identified as creating collaborative
working relationships and assisting in dealing with issues of moral distress. Team
members highlighted the need to discuss patient-care situations to not only give
credibility to their decisions but also to seek the support they needed from fellow
workers (P6, P9 and P2). They felt support from within their own discipline was most
useful (P9, P2 and P6). Participants stated these colleagues would understand your
situation and support you, especially in difficult situations which contributed to moral
distress (P9).
I would find the support more within the other senior medical staff than seeking
it from nursing staff or other staff. I suppose there was support from doctors,
because they grasped the difficulty of the situation. In many ways, the medical
staff, I guess were happy they weren’t in my position. (P9 doctor)
In another patient-care encounter, a nurse (P6) recognised a moral distress

situation occurring when a doctor requested aggressive treatment to continue, but this
was not possible due to patient deterioration. The nurse recognised the need to gain
support from another nursing colleague.
So, I cracked it and said get the wife in here as this is not acceptable. I got another
nurse up to support me because it was so distressing. His blood pressure dropped
again … forty over nothing. I had taken him off [the dialysis machine] by then
and was like I’m not doing this. I took him off and then he died two hours later.
This little doctor came in and said to me … she was crying. She said, oh, we could
have saved him. Oh my God, I was so angry I just had to leave. I thought that was
so poorly managed. (P6, nurse)
Participants discussed the importance of support when moral-distress situations

arose, further evidencing that they sought support mostly from within their own
discipline.
Yeah, medical colleagues. Perhaps more than just a colleague, it’s a colleague or
friend that you feel is a sort of personal confidante you can talk to. (P9, doctor)
And,
I think that having a supportive network around you in your workspace is really
important. For the nephrologists, it is obviously each other. They have that, and
for us nurses, it is each other. You do tend to gravitate to those people who have
a greater understanding of where you’re coming from. For me, if I had any of
those frustrations, then I would be discussing it with my co-workers and coming
to a conclusion and whether it needs to be taken further. You just need to go,
okay, we did the best we can and there’s not much else we can do. (P2 nurse)
Team respect was identified in the way some participants spoke of their fellow
colleagues and how they had handled patients and relatives (P3).
I had another gentleman who was dying, and our registrar was there at the time
and she was just beautiful. She was absolutely beautiful with how she handled
people. You couldn’t have asked for anything better. This other person … the
fellow who wouldn’t accept that he was dying and had the gangrene and
everything. I thought his nephrologist did a wonderful job at it. (P3 nurse)
A participant described how the doctor had given a patient a poor prognosis and
then told the patient their treatment would need to stop (P3). The participant expressed
respect for their colleague in the way this was communicated.
I felt they did an exceptional job because in nearly forty years of nursing, you’ve
seen bits and pieces. You know that doctor’s hand all that bad news over to
somebody. The way they say it … the patient has no idea of what they’re being
told, or what the implication is. They walk away and they ask you all the questions
they should have asked the doctor. The cases I’ve had in renal … I think they’ve
been very clear about what they want and what the outcome is going to be and
what their advice is. I think they’ve done an exceptional job at it. (P3 nurse)
And,
The other thing that I think is important is respect. Not only communication, but
if you respect your fellow workers, then a decision that they give you is much
easier to understand. (FG1, doctor)
Both support and respect for colleagues was highlighted, with support sought
from members of the same profession (P9, P2, FG1). These colleagues would best
understand your situation. This support was sought in situations of moral distress and
was used to seek justification for actions and reassurance about decisions. Respect was
shown by a participant in the way they discussed their colleagues and praised their
work (P3). Participants also identified the need to negotiate with colleagues in patient-
care situations.
4.3.2.3 The Value of Negotiation within the Team

Participants recognised they needed to negotiate within the MDT to achieve
outcomes which prevented moral distress arising (P6, P7, P3). Finding acceptable
solutions was important, as was recognising the different opinions within the team.
I think everyone has their opinion. I think generally… oh, I think it probably
differs. Most nurses I would think are patient focused; they are there for the
patient first. Again, it is part of that bigger picture. You can’t just go in there and
say, no, patient says no. See you later. You have to find a way to talk about that,
negotiate around that to get outcomes that everybody is happy with. There’s no
point in alienating a factor to make it unpleasant and difficult for the patient. (P6
nurse)
Negotiation occurred in different ways and different strategies could be used to

achieve preferable outcomes (P7, P3). Participants recognised different approaches to
negotiation.
There probably are some people who would stop and think about it, and maybe
wouldn’t say can you do such and such; but would say, have you thought about
this or I wonder if this. (P7, doctor)
One nurse discussed a way of approaching the situation whereby the plan was
already agreed with nursing colleagues and then presented to the MDT (P3). In this
way the nurses were satisfied the plan was acceptable, which ultimately prevented
moral distress arising in the nursing team.
We kind of give the team an idea of what is happening with the patient and what
our plan is. We get some feedback from them [the doctors] and whether they’re
happy with that, whether they want something else done, or whether we bring in
other team members to help us with something that needs to be addressed …
Generally, as a rule we go to them with a plan. We’ve already come up with a
decision and plan and we put it to them and say how do you feel about that and
they go, yeah, okay. (P3 nurse)
Part of the negotiation process was to challenge the views of others; participants
highlighted that this was changing the way in which healthcare is now delivered (P2,
P3). They saw the process was more transparent and assisted in better outcomes for
patients.
They [the doctors] are in front of the whole multidisciplinary team and they are
challenged more now than they ever have been before. In a way it has helped the
patients get a better level of care in that decision-making process. (P2 nurse)
Participants identified this process of negotiating the plan for the patient and
listening to each other was important for a successful team.
Collaboration, willing to listen, and all that kind of thing and everybody bringing
and sharing not only their clinical experience but their life experience with it too.
That makes a successful team. If you have somebody who is not willing to listen,
the team won’t function. (FG1, doctor)
Negotiation was identified as significant to achieve acceptable outcomes for the

patient and the team (P3, P6, P7). Challenging the views of others was used to support
the decision-making process (P2) and a willingness to listen was given priority as
contributing to the functioning of the team (FG1). These processes of communication
were critical to prevent moral distress and seek acceptable solutions to areas of practice
that participants believed to be the correct treatment for the patient. When
communication did not occur and members were excluded from communications,
moral-distress situations were identified.
4.3.3 Barriers to Team Communication

4.3.3.1 Exclusion from Team Communication
Exclusion from communication regarding the care planning for patients led to
tension within the team and contributed to moral distress. In one situation this resulted
in the patient having a catheter inserted, which this participant considered an
unsuitable treatment (P6). The patient suffered dementia and could not be trained to
manage the home dialysis for which the catheter was inserted. This participant felt the
patient had undergone an unnecessary procedure which could have been avoided
through inclusive team communication and planning.
What annoys me more is when they are not included in that meeting. That annoys
me more. When a doctor comes out and goes, I have just referred this patient for
a catheter. You’re like, I’ve never met them before, they’ve never expressed
interest and never been brought up in a meeting as being suitable for PD
[peritoneal dialysis]. This is a patient at the moment is on haemo [haemodialysis]
and didn’t like it because they had to travel a long way. The elderly man has
dementia, wanting to do PD and wanted a home therapy. The doctor said okay
I’ll put a catheter in for you … So this guy has got dementia, his wife has got
dementia, and you can’t teach them new things. They can’t self-care to look after
this catheter, has an open ulcer that has got E. coli in it and has been there for two
years. You’re going to get that straight in the catheter and get peritonitis and kill
him. None of this was discussed first. That annoys me far more than any
discussion that would happen in that meeting. To me, it’s the doctor not valuing
the process of the team and being a pushover to the patient. (P6 nurse)
In another case, the participant (P5) was not included in a meeting with the
family to discuss the ongoing care plan. They stated this occurred regularly, with some
team members not included in these meetings.
I’m not sure if they deliberately leave the nurse out or if it is just the nurse is not
seen to have any input in that situation. (P5, nurse)
Another participant highlighted the lack of inclusion of the nurses in the

communication process for a patient, saying “no they are not part of it” (P1 allied
health). Exclusion from communication was associated with the experience of moral
distress. Moral distress was encountered when team members believed a patient was
scheduled for unsuitable treatments. One participant described this experience as
“annoying” (P6). Several participants expressed their frustration with this lack of
inclusion in communication and recognised this contributed to their moral distress (P5,
P6).
4.3.3.2 Lack of Negotiation in Team Communication

Participants reported situations in which a lack of negotiation occurred within
the MDT, resulting in conflicting decisions about patient care. Different doctors
changed a patient’s care plan, which was not well communicated and led to confusion
and uncertainty of care.
He left saying, we do half FFP [fresh frozen plasma] and half albumin. He went
away saying that and then the other consultant said I want four litres of just
albumin. I said that was not what I was told. Who do you go with? Then I got into
trouble because I should have gone with the person that was on for the wards and
not the one who nicked off to Adelaide. He told me that was what he wanted
before he left. The other consultant changed it and so I challenged it. I don’t think
it went down very well. I just, I need a plan, because one is telling me one thing.
I have got to tell the young doctors what to do. (P4, nurse)
This participant felt responsible for the patient care and often directed junior
medical doctors on the plan. It was difficult when the plan was changed without
enough communication and negotiation. Another participant described difficulty in
negotiation regarding patient care and stated the doctors were “not approachable”.
Yes. We get the acute patients. Well, the acutes and chronics. From an acute point
of view, an elderly person that has maybe had a stroke or has gone septic, that
has a lot of comorbidities as well – they’re putting vascaths [vascular catheters]
in them and getting us to dialyse them when they are – they’re pretty much
nonresponsive at times when they’re in the unit. They could be in pain but
because they’ve got no blood pressure, the doctors say don’t give them pain relief
because it drops their blood pressure. Then we can’t dialyse them and they need
to have the dialysis. So it’s all that … wanting to give pain relief because they
need it, but not being able to give pain relief because it would drop their blood
pressure. We’re trying to dialyse them, and we need blood pressure, because
we’re dropping the blood pressure. Really, our doctors aren’t that approachable
on those sorts of issues, which is hard. (P5, nurse)
Individual participants encountered difficult situations when they felt their views
were not listened to and negotiation was limited. This led to a feeling of frustration.
It is still that the nurses are the last people to listen to. Let’s listen to everyone
else, yeah. It can get a bit frustrating for us. (P4, nurse)
This nurse noted other members of the team [allied health] often interfered in
patient care, which was interpreted as a lack of respect and negotiation for their
management of the patients.
They are useful, but they are also a hindrance because they give the patient
everything. Where we’re saying this person can’t come on a morning shift, she’ll
interfere and tell the patient. Oh, I’ll get you a morning shift. (P4 nurse)
One participant described a situation of desperation when they tried to negotiate

the involvement of another team in patient care with the doctor.
I was really quite desperate for the palliative care team to be involved early, so
they could make those connections … I could not get the doctor to do that. He
thought it was unnecessary use of palliative care services and there weren’t
required at the particular time. (P2, nurse)
These experiences contributed to situations which participants described as

“frustrating”, “hard” or “desperate” and led to one participant feeling demoralised.
You feel demoralised and you feel you’re not worthy of your job. I shut off a lot
more than I used to. (P4, nurse)
These experiences contributed to the ongoing frustration when negotiations and

communications within the team did not match the expectations for patient care. This
contributed to moral distress and was identified as affecting individual participants.
Another communication issue identified was the use of language and its contribution
to moral distress.
4.3.3.3 The Language and Labelling used in Team Communication

Language and labelling differences were identified by two of the allied-health
participants as contributing to moral distress (P1, P10). It was evident in some of the
interviews that different language and labelling were used to describe patients and
patient behaviours. The team members used language in team communication in
diverse ways.
One of the allied-health professionals expressed concern at the use of certain

phrases and labels by other team members and considered this language contributed to
moral distress.
I can experience it every day, listening to how doctors talk about the patients. I
can have a degree of moral distress then. I think it is what judgement … every
time I hear the word non-compliance, I feel some small amount of moral distress,
because I think that’s a judgement base. I feel there are often reasons why people
choose not to take their medications, or not to come to an appointment. They are
labelled noncompliant straight away. (P1 allied health)
Another team member also noted this labelling of patients.
She rang me back two months later – last week or the week before and said I want
to see that guy you recommended. I am ready now. I just felt great about it, but it
was such a shame that she’d been labelled this difficult person. She was actually
just struggling with her issues. (P10, allied health)
One allied-health participant preferred to use language which identified the
patient as a “poor self-manager” (P1, allied health). This suggested the patient did not
have the resources or knowledge to manage their health in the way health professionals
understood as appropriate. Terms such as “noncompliant” were used to describe
patients who did not meet expectations in managing their health.
She was young, and she used to go out and party and everything like that. We
said to her one day … then she wouldn’t turn up to treatment. Then she was trying
to get on the transplant list, and the doctor said you can’t go on it because you’re
noncompliant with your dialysis. We’d try and get her to come in for a month.
You have to be there three days a week for a month and then we’ll think about it.
She gets to the third week and wouldn’t turn up for treatment. (P5, nurse)
And,
Those things morally distress us because they’re going and driving in a car. The
other things are like some of our older patients are still driving. They have no
blood pressure when they leave the unit. They’re diabetics and noncompliant
diabetics are driving to dialysis without checking their blood sugar. They’re
walking in and telling us, Oh, I drove off the road. Lucky it wasn’t a big ditch.
They’re telling us that when they walk in, or they went off the road and hit one
of the guardrails. They’re worried about their car. They’re more worried about
their car. I’m thinking, hang on, I’m just glad you didn’t hit another car. (P5,
nurse)
Some participants (P5, P6) openly used negative language during the interviews
and were comfortable in using labels. “She’s just a nightmare” (P5) and terms like
“old, sick and old and crumbly” (P6) were used to describe the patients. Some
participants frequently used this language, but others felt this contributed to moral
distress in the team (P1, P10). The term “aggressive” was also used in participant
interviews (P9, P7).
He went on to have dialysis. He was aggressive on dialysis, difficult to manage,

and his mental state was no better throughout the process. It was unpleasant for
him in that he would call out during the process. (P9, doctor)
Behaviours of patients and relatives were described as aggressive (P7 and P9).
While this term appeared to be used as descriptive rather than derogatory, other
participants shared a different view (P1, P10). The two allied-health participants felt
the use of certain language led to stereotyping patients, which then affected the care
they were provided and the way they were treated.
In the journey board we can have a patient described by the nurse, that he’s
running the journey board and I don’t know them yet. They’ll say aggressive.
There are certain words they will use to describe. That creates an environment
where the team straight away have a perception of that patient as a certain way.
They go in with a different persona, expecting and looking for different things.
(P1, allied health)
Use of language in the interviews raised an important aspect in the development

of moral distress for some of the participants. The differences identified in language
used in the team contributed to moral distress for the allied-health members of the
team; they viewed this language as not conducive to patient-centred care, thus
affecting the care of the patients and their family. While participants highlighted
communication issues within the team as problematic at times, they also discussed
communication issues with other treating teams.
4.3.3.4 Poor Communication with Other Treating Teams

Moral-distress situations were described when poor communication with other
treating teams led to adverse outcomes for patients. The renal team were heavily
involved in a patient’s care and considered the patient “our patient” (P3). This
participant described situations in which the lack of communication with other treating
teams led to poor patient care and resulted in moral distress.
The patient was acutely unwell and was diagnosed with endocarditis and was
admitted to hospital. He had a heart attack that night and his prognosis was
terminal. The heart was damaged severely, and they weren’t going to do anything
about it. Because he was admitted to the hospital, their unit took over his care. It
got to the point where he was failing rapidly, and the family wanted him
transferred to the little country town where he was from, to have him at the
hospital there where he could die there. I said, what’s happening, and they said
well, they really wanted to get him home and they weren’t able to transfer him
because of this and that. I spoke to the manager of that unit and I asked why
anybody didn’t call. He’s our patient. We could have done it. We could have had
the staff. We do that sort of stuff. You don’t fit into this little box of what is
normal. (P3, nurse)
In another situation, a patient was to undergo surgery when they were clearly
close to death. The participant described how the lack of communication between
teams resulted in poor patient care.
The vascular team said, oh yes, we’ll just go ahead and do this. You’re looking
at him and thinking, you’ve got to be kidding. This person is just about to die.
You’re going to go ahead and put him through that trauma and probably cut his
leg off and the ultimate outcome was he was still going to die, but he was going
to go through this hideous series of events to get there. His family were going to
suffer because of that. (P3, nurse)
The participant (P3) gave another example of poor communication between

teams.
Yes, I think we have excellent communication within our group. It is when other
treating teams get involved. There seems to be that lack of one team talking to
another. Within our team I think we have a brilliant group. (P3, nurse)
In contrast, one participant cited an example of good communication with

another team.
Palliative care was involved. We got them to come and they were very good. We
had very good communication between their staff and our staff, to know what
was happening and how we could work together. The patient’s sister came up and
his daughter. It was all managed well. (P6, nurse)
When communication practices were identified as constructive, there was no

moral distress reported by participants. Communications, both within the MDT and
with other treating teams, were discussed as critical to management of patients at EoL.
Poor communication at EoL could contribute to moral-distress situations.
4.3.4 Theme Two Summary

Intentional team communication, respect, support, and negotiation were
practices identified as enabling good team communication and collaboration. Team
meetings supported communication and allowed a safe space for sharing of
information on patients and shared decision making. Support within the team mostly
came from within the participant’s own profession, who were described as people who
best understood your perspective. Negotiation was used within communication to
present plans for patient care.
Moral distress arose when there was exclusion from communication, a lack of
negotiation between team members, and opposing views on the best treatment and care
for the patient. The language and labelling used by some team members also
contributed to moral distress of others by labelling the patient. Communication with
other treating teams was highlighted as a time when many issues arose that contributed
to poor patient outcomes and moral distress. The many experiences of moral distress,
participants’ reactions to these experiences, and strategies used to mitigate the distress
formed Theme Three, which is now discussed.
4.4 THEME THREE: THE MORAL DISTRESS EXPERIENCE –

REACTIONS AND STRATEGIES
4.4.1 Introduction
Participants highlighted the experience of moral distress in their everyday
practice in areas involving decision making (Theme One) and team communication
(Theme Two). While participants provided few clear definitions of moral distress, they
described in vivid detail many experiences of moral distress. Many experiences had
occurred several years before and were remembered for the impact they left. A broad
range of terms was used to describe how participants reacted emotionally to the
experiences, and many identified a variety of strategies they used to tackle moral
distress. These strategies included:
• using peer support
• rationalising and bracketing experiences
• relying on past experiences and speaking up, and
• taking a break from the profession.
4.4.2 Defining Moral Distress

Participants struggled to provide a succinct definition of moral distress. Most
stated they had not heard of the term before but were able to provide specific examples
of their experience of the phenomenon. A definition was provided in the participant
information, and during several interviews a discussion about this definition was
needed to assist participants to identify examples. Several participants identified
definitions which resonated with their practice (P3, P4 and P7).
Moral distress for me is where I can’t do my job properly. It affects the whole
team. We get stressed because we’re busy. We can’t do good patient care and
things get forgotten. So, you go home feeling that you haven’t done a good job.
(P4, nurse)
Moral distress was also defined in relation to situations they had experienced.
Yes, you’ve come to a dilemma where because you’re the patient advocate or you
understand the patient really closely, about what they do and do not want. Maybe
the family members around them are pushing to have a particular type of
treatment. You know they are only going along with the family because they are
pressured to or because they feel they have to, but it is not really what the patient
wants when it comes to the time of them dying or winding down. You would feel
that you’d like to be the patient’s advocate and try to push their opinion to the
family and make it quite clear that this is really what they want. Sometimes you’re
asked to do things because medically they say no we’re going to do this and that.
You don’t really feel that is what the patient wants. (P3, nurse)
A further definition was offered by another participant, who associated the

distress with a moral issue.
A distress, a feeling of distress, unease, upset, not feeling completely calm and
comfortable, and I guess then distress can break down into different reasons.
Moral distress is a feeling of distress, unease or upset regarding a moral issue or
concern. (P7, doctor)
Two other participants did not provide any definition of the phenomenon (P1,
P8) but did have a general understanding of the meaning of moral distress in their
everyday practice. All participants provided examples of the phenomenon and its
impact. Most described feelings they associated with situations of moral distress.
4.4.3 Emotional and Behavioural Responses to Moral Distress

Moral-distress situations discussed in this study were both recent experiences
and past experiences from many years ago. Participants clearly recalled their emotional
distress and its impact on them (P8, P6). They described a wide variety of terms for
their emotional experience of moral distress. These included “traumatic”, “upset”,
“angry”, “horrible”, “demoralised”, “tough”, “uncomfortable”, “confronting”, and
“distress”.
I felt distress because I felt the patient was suffering unnecessarily and
inappropriately with no potential gain from going through that suffering. The only
conclusion was that they were going to die. (P8, doctor)
And,
I was so angry, I wanted to leave. I was so angry. We tortured that man to death.
I will never forget that. We tortured that man to death. (P6, nurse)
As a response to a moral-distress situation in which a patient wanted to withdraw

from treatment against family wishes, one participant found she was unable to provide
care due to being “too emotional” and needed to withdraw herself from the situation
(P3). Supporting the patient in this case was what the nurse believed to be the correct
action.
I’m sorry I was too emotional. I knew that was not what she wanted, and I felt
that was wrong. I felt they weren’t listening to her. They were making the
judgements for whatever other reasons and they weren’t listening to her and I
couldn’t do it. (P3, nurse)
This participant also described her reaction to moral distress and its impact on
her sleep.
Other than just to reiterate the fact that with moral distress, you can go home, and
you don’t sleep. You’re awake through the night. It plays a huge impact. People
aren’t nurses. We’re nurses because we like to care for people. (P3, nurse)
Several participants described taking their moral distress experiences home after
working and venting to their families (P1, P4). One nurse described their family as not
useful in this situation because they lacked an understanding of the issues (P4).
My husband will often say to me, don’t get so worked up about it, when I am
telling him. (P1, allied health)
And,
My husband just sits there and gazes vacantly at me. I was better talking to the
dog. I used to offload to him. He doesn’t get it. He doesn’t know what I do. He
goes to work … and comes home. He doesn’t get what we do. When he has a bad
day, I know it’s bad. I look at him and think you’ve got no idea. (P4, nurse)
Although family support was not identified as useful, several adaptive

behaviours were discussed.
4.4.4 Adaptive Strategies used for Moral Distress in EoL Care
The adaptive behaviours identified in response to moral distress included
seeking peer support, rationalising, bracketing the experience, and using previous
experience to enable assertiveness in situations. Peer support was often sought, and
this usually came from within the same profession. Rationalising and bracketing the
experience were discussed to justify actions and to separate feelings of moral distress
from everyday practice. Past experiences were highlighted as empowering and enabled
participants to now speak up in situations of moral distress.
4.4.4.1 Peer Support

The value of peer support was obvious in circumstances when participants felt
they could call their colleagues who were off duty, often late in the evening, to discuss
situations of moral distress which had occurred (P5).
It is usually the nurses. I could get in the car after a late shift and I’ll ring one of
the girls and go can you believe that after everything – we might even get stuff
put in place. The nurse manager got us a bed for them to go palliative. We might
have even done that much. Then before we know it, no, the doctors have spoken
with the daughter, and the daughter says no, they can’t stop dialysis. It’s like
what? (P5, nurse)
In moral-distress situations in the workplace, participants said they often

requested support at the time, mainly from those in the same profession (P6). This
nurse felt unable to treat the patient due to their condition and sought support from
another nurse (P6):
So, I cracked it, and said get the wife in here as this is not acceptable. I got another
nurse up to support me because it was so distressing. (P6, nurse)
The need to discuss situations within the same profession was consistently cited
because participants felt those people had a greater understanding of the issues (P2).
You do tend to gravitate to those people who have a greater understanding of

where you’re coming from. For me, if I had any of those frustrations, then I would
be discussing it with my co-workers and coming to a conclusion, and whether it
needs to be taken further. You just need to go, okay, we did the best we can and
there’s not much else we can do. (P2, nurse)
This seeking of support from colleagues was an adaptive behaviour to situations
of moral distress. Other adaptive behaviours that enabled participants to situate their
moral-distress experiences were also discussed.
4.4.4.2 Rationalising and Bracketing

Although moral distress resulted in emotional responses, a further adaptive
behaviour was rationalising that the participant had done their best in the situation.
Participants felt they could not influence the decisions made by the team or patient and
so needed to adapt to the situation (P2).
I think that, for myself, I rationalise that in the fact that I do my best. I try and
speak out for my patients, but I also understand that there are times where I am
not going to be able to get what I want or get what I believe is best. I truly do
believe that we all want what is best. Sometimes it is just different. (P2 nurse)
Another participant identified the need to put reactions to moral distress in the
“background” and to bracket the experience from everyday practice (P3). Caring and
being a nurse to patients was important, but emotional reactions must be put aside to
perform your professional role.
I found it is really hard at times to – okay, you’re the professional. You’re there
for advice and to care and stuff like that. You’ve got to focus on your role and let
the emotional stuff be in the background. (P3, nurse)
Another nurse (P5) stated the need to separate emotional reactions so they could
continue their job.
I think we’ve always done that. I think we have to if we want to survive for as
many years as we do. I think some stuff we just don’t take on board emotionally.
We just have to go, yeah, it’s just over there. (P5, nurse)
Another participant described the ability to not take moral distress “on board”
(P7). The difficulties patients experienced were described as “miserable” and “really
tough”; however, coping with this was viewed as part of one’s professional role.
I don’t take that on board. So, I very rarely get … that doesn’t usually affect me,
because I just think, jeez … you have a really tough life. You are in a miserable
position and life is really tough for you, and I can’t really help. (P7, doctor)
This doctor noted that in other parts of their professional role they did look after
many healthy patients, which made their work less difficult and with fewer moral-
distress situations. This rationalising and bracketing was used as a strategy in moral-
distress situations in everyday practice.
4.4.4.3 Using Past Experiences and Speaking Up

Several participants described how experience affected how they now dealt with
situations. One described experiencing moral distress due to providing extensive
aggressive treatments to young patients who subsequently died (P7).
I don’t get worn down by my job anywhere near as much as I did when I was the
registrar for three months and I worked my butt off for these young patients who
at the end of the three months all died. I was just left wondering why I had given
up all of that time and my own personal time in order to do all these things for
these terribly sick people who were really young and then all died anyway; and it
just felt horrid, the whole thing, so I couldn’t cope with that. (P7, doctor)
Others also gave examples where their previous experience now influenced how
they would react in situations of moral distress (P3, P7 and P9). One nurse explained
they would be more assertive in situations to prevent outcomes which led to their moral
distress (P3). This involved speaking up and, in some cases, taking initiative to discuss
with team members who was responsible for decision making.
Most of the nurses I have worked with in renal would speak up. Again, I think
that comes down to experience. I’ve worked with a lot of staff that have stayed
in that area for a long time. They have the experience and I think they feel
comfortable in having those conversations, and I’d let my nurse manager know
that was the scenario. I’d talk to the nephrologist who is caring for the patient and
then I’d involve myself in with the other team. I don’t think there would be any,
oh no, you can’t do that. I would just take the initiative to do that now. (P3, nurse)
One participant described a moral-distress situation from ten years ago which
had a significant impact. A young patient had decided to stop treatment and end his
life because he could not support his family (P9). His family were then able to claim
his life insurance. This participant explained how experience would assist in coping
with this situation now.
I don’t know that I would have done it any differently, but I think that my ability
to cope with it now is better than it was back then, simply because of experience
and exposure over that period of time. (P 9, doctor)
Similarly, another doctor related the importance of maturity and experience in
dealing with moral distress (P7).
Yes, I do, but I also think it is part of my job now. I have a very one-on-one role
in what I do. I get to know the people, the patients and their families. Part of it is
developing rapport and having really honest conversations. I think that has
helped, as well as age, maturity and experience. (P7, doctor)
There was further discussion of needing a break from work to deal with a build-
up of moral distress.
4.4.4.4 Taking a Break

Some participants (P3, P4) described responses to moral distress that caused
negative impacts such as wanting to change jobs or take sick leave. While several
expressed their frustration with their jobs, they appeared resolute to stay in their current
job.
One nurse explained feeling “trapped” in her current job and thought about
looking for a new job. She described her current experiences as “draining”.
I’ve done this for twenty years. I’m trapped. I am thinking when the new hospital
opens, I’d like day surgery. I’ve done that before. They come in, they go to sleep,
they wake up, and then they go home. You haven’t got the personalities of the
patients. It’s very draining. I have done six dialysis units. They are very draining.
They are draining for us. (P4, nurse)
This participant also described how the work could demoralise her and the team,
and how the heavy workload affected her ability to do the job well (P4). She described
how other staff took sick leave at times of moral distress. She admitted she did not take
sick leave because this affected her peers and would make their job more difficult.
Yeah, the demoralisation and the team fall apart when we’re overloaded. The
morale of the team goes down. Some of them don’t want to come in. We’re
overloaded and do extra shifts. We’re asked to do extra shifts and we do it for our
colleagues. (P4, nurse)
Several participants discussed heavy workloads that led to moral distress when
professionals felt they could not give a patient the care they needed. The participants
described their behaviours in these situations, which were mostly adaptive. They often
sought support from peers, but also noted how these situations affected the way they
felt about their job and their ongoing moral distress.
4.4.5 Theme Three Summary

Moral distress was a difficult phenomenon for this team’s participants to define;
however, everyone interviewed provided examples of their moral-distress experiences
and the impacts of these experiences. The terms used to describe moral distress
included “traumatic”, “upset”, “angry”, “horrible”, “demoralised”, “tough”,
“uncomfortable”, “confronting”, and “distress”. Adaptive behaviours identified were
seeking peer support, rationalising, and bracketing the experience, using previous
experience to gain a voice, speaking up in situations of moral distress, and taking a
break from the workforce.
4.5 THEME FOUR: PROFESSIONAL PERSPECTIVES RELATED TO

EOL AND MORAL DISTRESS
4.5.1 Introduction
The participants in this research belonged to three distinct professional groups:
nursing, allied health, and medicine. The participants identified the roles and
responsibilities of their individual profession, and their different perspectives
contributed a range of views on the care of EoL patients. Each professional group
recognised the different professional perspectives but also identified the need for a
shared understanding. These perspectives gave insights into how the professions
interacted and contributed to the experience of moral distress within the MDT.
4.5.2 Allied Health Perspectives

The allied-health participants discussed their role as contributing to the
psychosocial assessment of the patient. They described their role as providing a
different perspective on situations, which could contribute to decision making and
planning pathways for patients.
I think what it is about is us as a team just trying to give all of our perspectives.
The patient is the one that is going to make the decision. I see my role more in
those patient-care plan meetings as just trying to explain from a psychosocial
perspective, to the doctors, what I see from my assessment. That’s all I can do,
and they are pretty good. The doctors are pretty good at being able to generally
go okay, hmm, I hadn’t thought of that. Just sometimes they can, I think, feel like
hang on, I’m the doctor here and I think this kind of thing. (P1, allied health)
And,
My role is really more to do with psychosocial assessment and to look at them as

a person in the context of heading toward choosing or not choosing dialysis.
You’re looking at self-management more. You’re looking at where they fit and
what is important to them and where dialysis could come into the picture for them.
(P1, allied health)
Allied-health participants identified their care as “holistic” and focusing on the

“individual” patient to work out what was important for them (P1, P10). They stressed
the importance of assessing the client and their quality of life. They avoided using
labels for patients and considered them from an individual and personal level.
That holistic nature of what we do, where we just don’t go in and look at the one
thing, or the label that person has. We look at them as an individual and
everything in their life and we do a lot of that real client-centred care, that holistic
care, and that’s very much embedded in our philosophy. How can we make the
person’s quality of life and overall level of independence as good as it can be?
There’s definitely a foundation in all of that stuff within our profession. (P10,
allied health)
These participants felt moral distress when they observed comments that went
against this patient-centred approach. The use of language was one example where this
situation was discussed explicitly.
Every time I hear the word non-compliance, I feel some small amount of moral
distress, because I think that’s a judgement base. I feel that there are often reasons
why people choose not to take their medications, or not to come to an
appointment. They are labelled noncompliant straight away. (P1, allied health)
The second allied-health participant also identified it was important in her

professional practice not to listen to the label the person had been given by others (P10,
allied health).
And that holistic nature of what we do, where we just don’t go in and look at the
one thing, or the label that person has. We look at them as an individual and
everything in their life. (P10, allied health)
The allied-health participant experienced moral distress when other
professionals discussed the withdrawal of treatment for patients and did not
acknowledge the patient’s individual right to make decisions.
I hear the comment all the time down there, like really they should stop dialysis.
Someone needs to have the discussion with them that enough is enough kind of
thing. They get this – they are very clinical in the way they look at it, whereas I
try to explain to them that this is this person’s life. You’re asking them to make
a decision to die now. (P1, allied health)
This participant also showed some understanding of the nursing perspective of

the situation but supported a patient-centred approach in wanting the patient to make
their own decision.
So, they stop dialysis and they’re dead within a week or two weeks. I said that’s
very hard for someone to make that decision. It is not an easy choice and it is very
hard for a doctor to say I am deeming your quality of life isn’t good enough and
you’re draining our health system, so you need to stop now. They wouldn’t do it.
They don’t do it. The doctors don’t do it, but the nurses expect them to, because
they’re the ones that are under the pump and are stressed all the time down there
with our big numbers. We’re at capacity at the moment. There’s lots of that type
of moral distress I find, between nurses. I understand what they’re saying to a
degree, but then I am more for the person to have some choice and to assist that
person in the decision-making process. (P1, allied health)
This patient-centred approach was highlighted by these participants as critical to

their work and was evidenced throughout their interviews (P1, P10). In contrast, the
nursing perspective throughout the interviews prioritised a relationship with the patient
as central to their care.
4.5.3 Nursing Perspectives

The nursing participants highlighted their “closeness” to the patient as central to
their care perspective. Several participants identified they had known these patients
over long periods and understood their lives (FG1, P3, P5). One participant described
this relationship as “very close”.
You have a very close relationship with them. You not only train them on a one-
to-one basis. You are their contact person, and you visit them in their homes.
You’re in very close contact with their family. Sometimes I used to say I see more
of some of my patients than I see of my own family. (P3, nurse)
Dialysis treatments involve patients attending three times a week for up to six
hours at each visit. Nurses spent time with these patients preparing and maintaining
their treatments, which enabled a close relationship with the patient and family to
develop. This participant described this as a “touchy-feely” relationship:
I think we all have a different perspective on things as far as nursing goes. We

tend to be more touchy-feely. I’d say the word would be. We usually know the
patients on a very personal level and being a support person in that way. We tend
to get quite involved with the family, knowing them over a long period of time.
Our perspective is coming from that area, whereas sometimes the doctors may be
the ones making this medical decision. This is the disease, and this is the
treatment we can give them. So, I think in that perspective, the nurses have got a
bit more touchy-feely thing that is happening, which doctors don’t necessarily
have time to listen to. (FG1, nurse)
Closeness to patients was also highlighted when a participant talked about a

patient who was dying (P5). The patient’s situation affected all the nurses who knew
this patient. In addition, nurses often attended funerals of patients, showing their close
connection with the patient and family.
You can always tell when we’ve got someone up in palliative. We all get a little
bit – especially when it is one that has been here a long time. We know them
really well. We know their families; we know their whole life stories over ten
years or so. You do get close to them, and there are the patients that each one of
us knows better than the other. A nurse or couple of nurses will always go to a
funeral. There will always be renal representation – that’s not your doctors or
social workers. It is the nurses that go to the funeral. Someone will always be at
a patient’s funeral. I don’t think anyone has died where no-one has gone to a
patient’s funeral. (P5, nurse)
The close relationships with patients and their family and the witnessing of
suffering of patients were cited as contributing to moral distress.
Maybe it’s because, as a nurse, you see people who do choose that option to
maybe stay on for that extra six months. Sometimes those patients you see do
have a lot more suffering in the six months. Other things happen to them and
they’ve got to spend their whole day there. They will get resentful of that. At the
end of the day, I guess it’s sometimes individual patients. You think, gee, they
really suffered in that last six months. It’s because you see suffering and you don’t
want to. You want to mitigate that. It’s a caring profession and you care for
people. You don’t want to contribute to their suffering or prolong it. (P6, nurse)
The desire to be the patient advocate was evident when this nurse stated she had
come to know and understand the patient well and what they would have wanted.
Yes, you’ve come to a dilemma where you may be because you’re the patient
advocate or you understand the patient really closely, about what they do and do
not want. Maybe the family members around them are pushing to have a
particular type of treatment. You know they are only going along with the family
because they are pressured to or because they feel they have to, but it is not really
what the patient wants when it comes to the time of them dying or winding down.
You would feel that you’d like to be the patient’s advocate and try to push their
opinion to the family and make it quite clear that this is really what they want.
Sometimes you’re asked to do things because medically they say, no, we’re going
to do this and that. You don’t really feel that is what the patient wants. (P3, nurse)
The nurse participants in this research highlighted their closeness to patients and
relationships they had developed when caring for them and their families (FG1, P3, P5
and P6). This closeness contributed to moral distress when situations affected patients
and were described as not what the patient would have wanted (P3), or through
witnessing suffering (P6). Participants recognised there were different perspectives
within the MDT, which was described as I truly do believe that we all want what is
best. Sometimes it is just different (P2). This insight showed the practitioners
recognised their professions had different focuses when dealing with their patients.
4.5.4 Medical Perspectives

Medical participants described the legal responsibilities of their role as central
to the way they engaged in patient care. They recognised the role of supporting the
patient and family in EoL care. They also gave the cost aspects of treatment some
consideration and described their response to the resource constraints (P7, P9).
4.5.4.1 Legal Responsibilities and Supporting the Patient Decision

The importance of the legal responsibility for patient care was identified by
medical professionals; they felt the final decision making rested with them.
The medical staff in the end are going to have to carry that. If the nursing staff
isn’t happy, take that on board and go back to the family, reconsider your position,
discuss it with other medical staff. In the end, medical staff need to make that
decision because they are the ones who are going to be carrying it at the end. (P
9 doctor)
And,
At the end of the day, the responsibility of the decision lies with the doctor. We
ask you guys to go along with that decision. There are two sides to that. You’re
in the passive position of having to follow that path or fight it if you feel strongly.
(FG1, doctor)
This doctor recognised their role of supporting a patient in EoL decision making.
A young patient was coming to the end of their treatment and was choosing to
withdraw from treatment.
I am sad for her that it has come to this, but it’s clear to me, my role is not to go
this is what I think you ought to do. My role is to support her in what she chooses
to do, and she is coming from a point that I can understand. (P7, doctor)
This support extended to supporting patients in explaining their decisions to their

family through an understanding of the disease process, the prognosis, and the burden
the treatment presented to patients.
So, for an example right now, the situation I am facing today: I have a young 28-
year-old dying today who is withdrawing from dialysis. Her family are finding
that very challenging because they think if you can keep dialysing then why
wouldn’t you? And she is pretty much done, and I think it’s a shame, if I was in
her situation I would want to continue, but she doesn’t have the coping strategies
to manage the situation, but she is in like a terrible position. She has lost her
transplant, her only chance; I said this to her yesterday, her only chance for a
good and productive life was that transplant and it’s gone. (P 7 doctor)
The medical participants identified their legal responsibility in making EoL

decisions and in supporting patient decisions. Another aspect discussed exclusively by
the medical participants in this study was the impact of resource constraint.
4.5.4.2 Resource Constraint

Resource constraint was discussed as resulting in moral distress when targets to
constrain costs were implemented. These doctors explained how this issue had been
addressed. They refused to be bound by funding issues or to allow these issues to affect
patient care (P7, P9).
I think that resource constraint is something that has an impact on everybody, but
that aspirational target, which we are not held to at the moment, but we were. I
am not going to make a decision that I think is not in the best interest of my
patients, regardless of what I’ve been told try and achieve from a funding
perspective. My take on that is I was unable to achieve that, because this patient
is not suitable for that therapy. I am not going to force a patient to do something
that they don’t want to do in this scenario. I think that we have been really pushing
the boundaries with putting patients in the past on treatments that we thought
were not appropriate and giving it a try; but again I would say to the patient, well,
see how it goes, if it works out for you, good – if it doesn’t, we will do something
else. I don’t feel particularly constrained by those issues because I think we are
constrained by the patients we have in front of us. (P7 doctor)
This participant (P9) described how targets were set for the treatment of patients.
Home-treatment targets were encouraged to support resource constraint, which this
participant did not agree with:
I mean, Australia has high rates of home dialysis compared to the rest of the
world. We sit at about thirty per cent. We were told our target needed to be fifty
per cent. The only places achieving fifty per cent are third-world countries where
there is only peritoneal dialysis as an option, because it is cheaper. We were trying
to push ourselves toward what third-world countries were doing to save money
and force patients – in my opinion – force them to do it for the sake of money.
(P9 doctor)
Participants felt they were under pressure to encourage more patients to opt for
in-home treatment, which contributed to the experience of moral distress.
4.5.5 Theme Four Summary

Participants from different professional groups identified what they viewed as
critical to their practice in EoL care. With the individual areas of practice came
challenges which led to moral distress developing within the individuals in the team.
The allied-health participants focused on the psychosocial assessment of the patient
and a holistic and patient-centred approach. They identified language used in relation
to patients as contributing to moral distress – patients were often labelled in a way
these participants found unacceptable.
Nursing participants experienced closeness to patients and recognised the
suffering of patients, which contributed to their experience of moral distress. They
experienced long periods of contact with individual patients and their family, which
allowed close relationships to develop, often over many years. In the interviews the
nurse participants highlighted that the relationships and closeness they developed with
these long-term patients contributed to their experiences of moral distress. They also
expressed an understanding of patient needs and desires in EoL care that led to
situations in which they wanted to advocate for the patient.
Medical participants in this study identified their legal responsibilities in treating

patients, and the need to support patients and families in EoL discussions. The medical
participants understood the prognosis for patients and this influenced the way they
experienced moral distress. Cost containment of treatments was described by medical
participants, which had implications for moral distress when deciding the best
treatment option for individual patients. Involvement in these highly complex and
individualised situations contributed to their experience of moral distress.
4.6 CONCLUSION TO THEMES IN CASE ONE
Participants in this MDT contributed widely to the discussion on their experience

of moral distress in providing EoL care to patients. EoL decision making was a major
theme and was complex, grey, and never black and white. Changes to decisions and
delays in decisions affected the MDT because care needed to continue or stop. Patient
quality of life was important in decision making and was highly valued by participants.
Family participation in EoL decision making was critical but contributed to situations
in which moral distress was identified. Families requested treatments to continue,
although participants thought them not in the patients’ best interests or what the patient
wanted. Families sometimes laid blame on the MDT for treatment outcomes. Family
dynamics could create difficulties for negotiation in EoL decisions. Participants
highlighted that some families needed more time for decision making to occur while
they adjusted to the patient prognosis.
Patient autonomy was not always respected in EoL decision making and patients
needed support in making decisions and communicating them to their family.
Participants saw withdrawal from treatment as a difficult time for patients when the
true burden of disease was identified. Medical participants discussed the legal
responsibilities of decision making and the complexities which contributed to
situations of moral distress.
Team communication, inclusion, support, respect, and negotiation were

identified as important factors in mitigating moral distress for this team. When
intentional and inclusive communication processes were evidenced, the team
functioned well, and the experience of moral distress was not discussed by participants.
Barriers to team communication existed when team members were excluded from
communication, team communications lacked negotiation, certain language was used,
and communication between teams was poor. These experiences contributed to the
moral distress experience.
Moral distress was a difficult phenomenon for participants to define; however,

all provided examples of their moral-distress experiences. Terms used to describe these
experiences included “traumatic”, “upset”, “angry”, “horrible”, “demoralised”,
“tough”, “uncomfortable”, “confronting”, and “distress”. There was evidence of
adaptive behaviours to moral distress: seeking peer support, rationalising, and
bracketing the experience from everyday practice, and using previous experience to
contribute to the way they now addressed moral-distress situations. Other responses to
moral distress included loss of sleep, taking sick leave, and wanting to leave the job or
take a break.
Participants in this research identified themselves as belonging to three distinct

professional groups. Each of these groups identified in their interviews common
elements which contributed to moral distress. The allied-health participants identified
a patient-centred approach to care and the use of language and labels as being pivotal
to their experience of moral distress. The nursing participants recognised a closeness
and connection to patients and families. This closeness contributed to their experience
of moral distress when they felt the patient did not get the treatment they wanted. The
medical participants identified the legal ramifications, patient prognosis and resource
constraints as impacting their role in EoL care. These factors were not explicitly
identified by the other professionals interviewed. These elements could contribute to
individual moral distress if patients were not provided the EoL care they wanted or
needed.
Throughout these interviews the stories told resonated with both current
literature and my own personal experiences as a clinician. Maintaining a non-biased
position during the interviews was important, as was acknowledging my own
positioning in the research.
4.7 PERSONAL REFLECTION ON CASE ONE
During the data-acquisition and analysis phases of this research, I engaged in

self-reflexivity, examining my own thoughts, feelings, and biases. As a researcher and
clinician, it was important to set aside my own judgements of the information I was
gathering and analysing to view the data from a researcher’s perspective. Throughout
these phases, I wrote reflections as each interview and focus group was completed. I
analysed these reflections to provide a cohesive summary of my own integration into
this research. After the interviews, I was able to self-reflect and allow my own feelings
and emotions about the data collected to emerge.
The qualitative approach used in this research allowed for extensive discussion
in areas that may not have been identified through other methods. Moral distress
remains an individual experience, but the data evidenced that the structural and
organisational context in which the distress is experienced must be considered. This
research allowed me to examine multidisciplinary views on these factors and to include
this data in further interviews. The interviews illuminated what was important to each
professional group in this MDT in providing EoL care.
The multidisciplinary approach in this research enabled in-depth examination of

different professional views of situations in which moral distress occurs. As a nurse, I
easily related to the nurses’ perspectives. I understood their responses in situations and
could easily identify with similar experiences from my own professional background.
I had never considered how medical or allied-health professionals experienced moral
distress in their clinical work. It was enlightening to understand their perspectives. The
disclosure of the way language is used in everyday practice and how it can contribute
to moral distress in another profession was illuminating. Further, the medical
participants articulated that legal issues, patient prognosis, and resource constraints
contributed to moral distress in EoL decisions. I had not considered these issues before
in everyday practice.
Throughout these interviews I posed questions regarding the team and how the
team may contribute to moral distress. I found many participants related situations in
which their moral distress had occurred due to the structural workings of the team,
such as team communication, team negotiation, language used within the team, and
team decision making. Team support and communication among health professionals
within the MDT were critical in providing patient-centred EoL care. Although all
participants justified the benefits of the MDT approach in caring for patients at EoL,
there was evidence of “professional silos” and how they still affected the experiences
of moral distress in this team. For example, participants still preferred to seek support
from within their own profession, rather than from other professionals in the MDT.
Participants recognised the need for integration of good communication between
professionals, but consistently articulated examples of disjointed team communication
and support.
On reflection, I became aware that many of these narratives contained highly

emotive experiences. These experiences acted as catalysts for the experience of moral
distress in participants when providing EoL care. Their stories of events were
engaging, and I could constantly detect a true caring and empathy for the patients
involved throughout the participant stories. All participants showed the patient was at
the core of their thoughts as they recounted the suffering and burden of disease for
these people, as well as concern for their quality of life. Several participants
highlighted how sad and difficult it was to be a patient with end-stage renal disease.
As I listened to each interview, I became aware of the participants’ empathy in

caring for patients, and how this empathy played out in the life of the participant. They
showed empathy in their language and tone of voice; several participants spoke of how
it was a part of their own self and why they had chosen a career in a caring profession.
Participants talked of their connections and closeness to patients. The mention of
walking in their shoes resonated with empathy for patients. Several stories were
relayed which showed the participant identified with the patient. When the patient
shared some commonality such as their lifestyle or beliefs, this made the participant
particularly empathetic toward this patient and they worked hard to meet the patient’s
needs. The responses to moral distress were unique in individuals but were connected
through the common theme of empathy for the patient and their family.
I was mindful that many stories were vividly described, even when they had
sometimes occurred years before. The impact of moral distress had been long-lasting
in some cases. Some of the participants used these experiences to change their future
practice, but the impacts of the events were often painfully clear. Other stories related
to the current practice of the participant; the situations causing moral distress were
clearly in the mind of the participant when they were interviewed. Empathy was shown
toward the patient who was in the forefront of their caring role at the time.
Experiences of moral distress discussed in this MDT case were identified with
emotional experiences and behaviours. Many participants had extensive experience in
their field and could relay their coping strategies for dealing with moral distress. Some
became emotional during the recounting of their stories, and as a researcher I was
constantly mindful of this. I would pause and wait for the participant, and quietly
assess the need to stop the interview. In several interviews in this team I made a
response to reassure them and remind them of the option to stop the interview. Each
time, I was reassured the interview could continue. My own health background assisted
me in knowing what to say and how to react in these situations. In these instances, a
pause allowed time for the participant to recover before continuing the interview.
The exposure of participants to their own experiences of moral distress led to an

awareness of this phenomenon. Many had not identified or labelled their previous
experience as moral distress. Some needed reassurance that their reactions to moral
distress were valid. These interviews contributed significantly to my understanding of
moral distress in this context. I personally gained knowledge on the work of the renal
team and the immense contribution this team makes to the lives of the patients they
care for. The experiences of moral distress in this case were significant and all the
participants relayed stories of immense value to this research.
Chapter 5: Case Two Findings
5.1 INTRODUCTION
This chapter details the findings from the second multidisciplinary team (MDT),
the palliative care team, which consisted of the inpatient team and the integrated
community team. Four main themes emerged from this case study:
• moral distress emerging in end of life (EoL) decision making
• team communication and the contribution to moral distress in EoL care
• moral distress experience, reactions and strategies
• reflective practice and professional supervision.
Theme One identified EoL decision making and how this contributed to moral
distress. Decision making in EoL was a difficult time for patients and their families.
Family participation was integral to decision making but family were not always well
prepared for change from the curative approach to comfort care. Family dynamics and
conflict in decision making affected the provision of care to patients. The patients’
right to autonomy in decision making created difficult situations in which moral
distress arose. The request by both patients and families for assisted dying was
highlighted in this theme.
Theme Two identified both enabling factors and barriers to team communication
within this palliative care team. Team meetings and team support contributed to good
communication within the team. The barriers to team communication included the
hierarchical structure which existed, team fragmentation and the use of language and
labelling. These factors contributed to moral distress within this team.
Theme Three concerned the moral-distress experience of participants and the

emotional and behavioural responses to this phenomenon. Descriptions of failure,
powerlessness, and feeling demoralised were some of the terms used by this team. The
strategies to mitigate moral distress included speaking up, using guidelines to support
practice, seeking the support of colleagues, and taking a break from the work
environment.
The final theme identified the use of reflective practice and personal supervision
within the team to support members experiencing moral distress. These practices
clearly benefitted the team in caring for patients and families at EoL.
5.2 THEME ONE: MORAL DISTRESS EMERGING IN EOL DECISION

MAKING
5.2.1 Introduction
EoL decision making was complicated by changes to the decision pathway.
These changes were often made by families when care was changed from comfort care
to more aggressive treatments. Family participation in decision making for patients in
palliative care was highlighted as important in this team, but often provoked moral
distress within the team. Requests for assisted dying were made in this palliative care
environment, which led to discussions on the legal constraints to these requests.
Suffering was witnessed by both families and carers in EoL situations and was
recognised as a distressing experience. Five subthemes in EoL decision making are
discussed here:
• EoL decision making and the impact of changing the decision pathway
• EoL decision making and family participation
• EoL decision making and family dynamics
• EoL decision making and patient autonomy
• EoL decision making and assisted dying requests.
5.2.2 EoL Decision Making and the Impact of Changing the Decision Pathway
Family members requested to change the pathway and treatment for their dying
relative because they did not appear to accept the diagnosis, even though the patient
was being cared for in a palliative care unit.
She was dying under clinical guidance for the dying patient, phase four,
unconscious, and her husband decided about five o’clock in the evening that he
wanted her fully treated and that she wasn’t dying. He was in denial that she had
cancer; we had to just treat her as active. We had to do bloods, put up an IV, all
that sort of thing. As I was spending that time with them and he was quite smiley
aggressive, another patient died, and I didn’t spend any time with that other
patient. I felt like I neglected everyone else. He’d been spoken to. Everything had
been agreed. He knew where we had been going for days. He decided that evening
that we’re going to change it all. I think why … it was distressing that I had to try
and talk to him about it and he wouldn’t have a bar of what I was saying about
her disease. The most frustrating thing for me was this other patient dying when
it was all going on. I hadn’t spent any time with that family. I felt like they were
neglected because I had this one difficult relative who took up all my time. The
next day she died anyway. (P9, nurse)
The experience of frustration was highlighted by a participant when the family

wanted changes to the care pathway. Frustration was also experienced by other
participants when it was felt the patient was not getting the care they deserved.
The family has given you information that they don’t want those active
interventions and they just want the patient to die peacefully. There is that
difference of opinion where you have to negotiate and work through that.
Sometimes it is frustrating, and we become distressed for the patients not getting
the care they deserve. (P6, doctor)
And,
Normally speaking we have a lot of family here. This is another struggle I find.
Sometimes it is not the patient that might be refusing the drugs, it is actually the
family. They either come in on two angles. They either want continuous pain
relief or no they’re fine, whereas you can see the patient is in pain. Sometimes
the family can prevent things, which can be quite frustrating, because we’re really
here to treat the patient. (P5, nurse)
Family participation in decision making influenced the care of the patient at EoL,
including deciding the treatments offered. These situations could contribute to
frustration and the moral-distress experience for individuals within the team.
5.2.3 EoL Decision Making and Family Participation

Families were not always prepared for the inevitable outcome and did not
understand palliative care does not include curative treatment; rather, it is more a
comfort approach to care. A not-for-resuscitation order was often needed in palliative
care to make the pathway clearer to families and for the team caring for the patient.
I think a lot of people aren’t quite prepared when they get here. There is a lot of
emotion. They want all the procedures to continue for treatment. Then we have
to say, actually, in palliative care we don’t do that. We need a not-for-
resuscitation order and they say that’s my loved one. (P7, nurse)
A nurse described how a patient’s wife decided to get the patient out of bed and
was still trying to give the patient a drink of water even though the patient was close
to dying:
The man could barely even … you could see by looking at him, he shouldn’t be
getting out of bed … but yeah, the night before she had got him out of bed, she
was trying to give him drinks, and we were like, what are you doing? (P8, nurse)
This situation was cited as contributing to moral distress when the participant
(P8) had explained the EoL care to the patient’s wife, and that the patient should not
be given food or fluids because he would aspirate them into his lungs, which would
cause further problems.
Moral distress was experienced when a family member wanted to decide

treatment for the patient that did not align with the views of the doctor caring for the
patient. The nurse recognised the relative was feeling guilty for not being there for the
patient before this time.
Yeah, and sometimes you get families who have been estranged, or they live away
and they are often the ones that cause problems, because they come in and they
want to sort it all out, and they feel a bit guilty because they have lived away and
they haven’t really got their hand on the ball … he [the relative] had come over
from overseas and we had a family meeting and he said to the doctor – he had
googled it – and he had spoken to a friend who was a doctor and said the doctor
should be doing this, this and this. He wouldn’t listen, he sat in here and he yelled
at us and carried on for an hour. (P10, nurse)
Family participation was recognised as necessary in this case, but it also led to
situations which were difficult to manage. Preparing and educating families on EoL
was integral to the work done by this palliative care team.
5.2.4 EoL Decision Making and Family Dynamics

While family participation in EoL decision making and care was essential in
supporting the patient, several participants identified the complexity of dealing with
various family dynamics and conflict.
There are families that are very cohesive. It’s like anything in life. You’ve got
families that are cohesive and families that aren’t. When you have a patient dying,
or a loved one dying, that added stress and element … then having estranged
families and members coming back together can cause a lot of conflict. (P1,
nurse)
Participants noted complex situations could arise when there was a difficult
family member.
This family member is a mess and they are really stirring the family up. By that
stage I’ve usually picked it up to be a personality disorder within the family that
is manipulating stress. (P6, doctor)
Conflict was observed between family members because of complex family

dynamics.
You’ve got a patient who has been married, divorced, and the ex-wife family.
Then you’ve got the girlfriend or boyfriend who has been on the scene for a long
time. Then you have the ethical and moral dilemma as well … the ex-wife is here
and she is taking charge and the girlfriend is not allowed in. (P7, nurse)
Dealing with these complex family dynamics was highlighted by one participant
as a learning opportunity.
I think you can learn something from everyone and every situation. You’re just
learning all the time. Everyone’s family dynamics are different, and I think you
just have to be patient and listen to what they have to say. Ideally, we want them
involved in their loved one’s care, whether it’s end of life or going home. (P5,
nurse)
One nurse (P6) found this a difficult and distressing situation to deal with. The
negotiation and discussion needed in situations with patients and families was
important in EoL care.
You’re the expert negotiator and the expert communicator, and the focus is on
the patient and the family and calming that down and getting the best outcome
for the family. (P6, doctor)
It was also important for families to be informed and educated on the dying
process as part of this negotiation (P5).
I try and either use resources, or I will try and explain about what we’re trying to
do and what we’re trying to achieve. It is just quietly guiding them through the
dying process. Some people are on board and understand and they don’t have a
problem. Then you get other people who don’t want to hear about it. (P5, nurse)
Family dynamics added a dimension to EoL care which contributed to moral

distress for participants. Negotiation skills were needed by the team to work through
issues which arose in providing the EoL care. These skills were also used in cases
where patient autonomy was being denied.
5.2.5 EoL Decision Making and Patient Autonomy

Patient autonomy was compromised in decision making when decisions made
went against what the patient wanted. A decision to keep this patient in hospital
contributed to a conflict in patient autonomy.
I was saying it’s his life and he wants to die at home. (P4)
And,
I can think of one fellow who had end-stage heart failure and was in one of the
wards here and had been in hospital for three weeks and there was nothing anyone
could do, and no-one was doing anything for him, and he desperately wanted to
go home. He lived on his own, and, I can’t remember, he was in his late sixties,
so he wasn’t really elderly, but he could die quite suddenly. He had a few falls,
but he really wanted to go home. I got a call from the ward, saying could you
come over and convince this man he can’t go home, he lives on his own, and we
are really worried. Can you come and talk him out of it? (P4, allied health)
The autonomy of patients to seek the treatment they wanted was a recurring
factor contributing to moral distress for individuals in the team.
I have seen a lady my own age recently who very reluctantly came into hospital.
The reason she was reluctant was because she wanted to die her own way, not the
way the medical system would medicate her. She was taking some oral analgesics
and oral antiemetic but did not want anything else until she was unconscious, she
said. I saw a staff member put a subcutaneous intima in her and, without telling
her, sedate her, put sedation in through the intima after she had specifically said
I don’t want anything. That creates moral distress. (P3, nurse)
And,
This story about him was that he didn’t follow what the doctors wanted. He didn’t
follow the treatment plans at his previous district. He moved into our district. I
had the opportunity to talk to him. He explained why he didn’t feel those things
worked for him and he had a different idea of his illness and what was going to
be beneficial for him. When I started talking to a nurse, I had only started part of
the story and she said, oh, he just sabotages everything. I said, no he doesn’t, he
is actually quite clear about what he feels is most beneficial for him, but people
don’t seem to want to listen. It’s like, come on, we’re health professionals. Let’s
get over this sort of expertise. (P2, allied health)
Another participant (P9) alluded to the expertise and labelling discussed above.
A patient had wanted to seek admission to hospital because she felt she had
deteriorated. The admission was denied by the doctors and the patient died at home
alone. This contributed to moral distress in this situation.
I did have another incident with a patient who rang. She was very distressed on
the phone. She said she had pain. We went through her pain medication with her.
Went through her PRN [medication taken when required] and talked about
wanting to go into hospital. I flagged it at that time. We do have to run the
admissions through to our specialist and was told that she … this is basically what
she does. She cries and she’s got a regime, and that’s how she is personality-wise,
and she’s not to come in. She was not suitable for it and not at that stage and all
this. One of the other nurses did back that up … that she’s spoken to them on the
phone and they do cry, it’s quite common. About perhaps, that was maybe
midweek. She did have a nursing service, but they didn’t go in very often, about
once or twice a week at that stage. I think she was still reasonably independent.
Then they went in after the weekend and she had died at home. She hadn’t killed
herself, but she had died at home, and they had been ringing and didn’t know
where she was. She was there for a few days, not found. I did talk about that once
in reflective practice, because yeah. (P9, nurse)
This nurse identified this event as distressing because the patient had not
received either the identified best care or the care which the patient had requested.
Autonomy of the patient and what the patient felt they needed at the time were not
considered. Team members experienced moral distress when patient autonomy was
not respected. Patient autonomy was also a factor when patients requested assisted
dying, as highlighted by several participants below.
5.2.6 EoL Decision Making and Assisted Dying Request

The request for assisted dying was frequently raised in the interviews (P3, P5,
P6, P7, P9). This request was made by both patients and families to participants.
Requests were made to end the patient’s life with medication. The legal situation
regarding these requests often needing explaining to relatives.
I guess we have to say, look, it’s not legal to do that and we say we are here to
make the patient comfortable, but we certainly do not give them an injection. But
we have all said, you wouldn’t treat a dog like this, or a horse like this, that’s true;
but unfortunately, that is the law, and we can only make them comfortable. I
remember one time, he was so cute, he was telling me you can give me the
injection now, he was like thanks for everything you have done for me, so give
me the injection now and I will go to sleep. And I was, like, I will give you the
injection now and you will go to sleep, but I will see you tomorrow morning. He
lived for another six months; I think. (P8, nurse)
And,
Patients ask us that quite a bit, and families ask us that all the time. I just say to
them, well, you know, legally we cannot do that. So just bring back legal into it
and then they go, yes, and they get it. Yeah, I have had people crying and saying
come on, get us the dose. Whatever, I just cannot do it and I [the nurse] am not
going to go to jail. (P5, nurse)
A community palliative care nurse explained her moral distress when being
asked about the best way a patient could end her life, and how much medication would
be needed to do this (P3).
Yeah, over the years I have probably seen lots of different examples. One of my
first that I have never forgotten is getting called out late one night to a home in
the bush. A thirty-year-old daughter was looking after her seventy-year-old
mother who was dying and in bed. Her mother was in her last few days of life,
and she called me to say my mother and I have had a discussion today and we
think we’ll end her life tonight. Can you help us? (P3, nurse)
The effects of this home visit personally affected this participant; she discussed
the need to seek support from a colleague after the incident. She confirmed she was
extremely upset and inexperienced at knowing how to deal with the situation, which
contributed to moral distress.
A further aspect of assisted dying requests was when patients and families
believed stopping an intravenous drip and oxygen would result in a quicker outcome
and were surprised when the process of EoL took longer than expected.
All the time. Why haven’t you given me the jab? You said you’ve turned off my
drip and you’d take the oxygen down and you said mum’s kidneys are going to
stop. Why haven’t they stopped yet? Two hours after you’ve taken the drip out,
and you’ve spent three hours in the last three days telling them it would take days
to weeks for the body to naturally die. Well, why you can’t just increase sedation
… because mum asked me not to. This is a natural process of dying. (P6, doctor)
Some families were very assertive about their request for assisted dying.
Where families will come to you and say you must do something now or you
must end it now. You need to give my mum or my dad or sister or brother the
injection now. I want it done now. (P7, nurse)
Talking to families about their request gave them more understanding of the EoL
care which could be provided in palliative care.
I’ve had patients say to me on the phone here as well. It’s cruel and you can do
animals and why can’t you do it for people. Generally, when you start talking to
them about it and explain, you say, oh no, we can’t do that, and you know, we
would do our best so that you’re not in any pain and that you’re comfortable; they
are normally okay with that. They’d agree. (P9, nurse)
Witnessing of suffering was identified as one of the reasons families made the
requests for assisted dying. Families found it difficult to watch their loved ones in
distress and suffering at EoL.
It is usually that helplessness and hopeless situation where people cannot handle
the distress of the person in the bed. It is our inadequacies, and it is our inability
to sit with the person who is suffering. People want you to drug them because
they’re crying. (P6, doctor)
Assisted dying requests were cited by almost all the participants in this team.
Several participants expressed their inexperience in dealing with these situations.
Referring to the legal aspects of these requests was the main strategy participants used
to deal with these requests.
5.2.7 Theme One Summary

EoL decision making consistently involved family participation. Many
challenging situations arose for participants around family; these situations contributed
to moral distress within the team. The family were important in decision making
regarding care and could influence decisions, change decisions, and affect the patient’s
autonomy to make their own decisions. Families were not always prepared for the
goals of palliative care: participants found they needed to negotiate with families and
explain comfort care to them. In addition, managing family dynamics was identified
as challenging.
Requests for assisted dying were commonly made to participants in this team.
Participants found it necessary to explain the legal aspects of these requests and to
explain the care which they could provide. The impacts of these requests were
especially difficult for inexperienced participants. Witnessing suffering by a patient
caused distress for both the family and participants. Moral distress was experienced
when patients did not get the care which participants believed was in the patient’s best
interest; sometimes this care conflicted with the beliefs of others in the team.
5.3 THEME TWO: TEAM COMMUNICATION AND THE

CONTRIBUTION TO MORAL DISTRESS IN EOL CARE
5.3.1 Introduction
Good communication was valued in this palliative care team as enabling
effective teamwork and positively influencing moral-distress situations. Team
members identified both enablers and barriers to effective communication.
The enablers of communication were
• team meetings and intentional communication
• support within the team.
The barriers to communication were
• hierarchical structure within the team
• poor practices in team communication
• the language and labelling used in team communication.
Good communication practices reduced moral distress while poor

communication contributed to moral distress within the team.
5.3.2 Enablers to Team Communication
5.3.2.1 Team Meetings and Intentional Communication
Team meetings and handover were identified as important times in which
intentional communication occurred within the team. They provided a key space for
discussing issues relating to provision of EoL care.
I think that this is key to everything within the health model. You need to have
regular meetings; you need to be able to communicate the direction and any issues
you may be having. (P1, nurse)
The meetings also provided a safe space and supported a culture within the team
which enabled people to voice their opinions when appropriate.
No, in this team, the culture is everybody has a say. It is always acknowledged.
If there are differences in opinions, if it is inappropriate, I say not in this forum
and I need to speak to you outside this forum. (P6, doctor)
Team members could express their views on situations and achieve consensus
on important issues.
I think the basis of having that meeting was to let everybody know that it was
understood we all had a different viewpoint on that. We needed to make sure that
ultimately, we ended up on the same page. I think that was the way that they dealt
with that. Let’s all talk about it. Let’s discuss why we had to do that. Then all
those people that were feeling uncertain … maybe we can help you understand
why we made that decision. (P7, nurse)
One participant identified they felt confident in handover to talk about situations
which were contributing to moral distress (P5).
We just say, they’ve had these many breakthroughs [pain], this is what is
happening now, we’ve tried this and this … normally the consultant is just very
good. (P5 nurse)
Participants highlighted meetings and handover as times in which they could talk
about patient concerns and have their views listened to. They provided an intentional
communication space and participants recognised these discussions provided a level
of support for decisions. Participants considered support important in everyday clinical
practice to reduce moral distress.
5.3.2.2 Support within the Team
Support from colleagues was highlighted in several interviews. This nurse (P3)
identified a moral-distress situation in a community setting while attending a patient
home visit. The nurse recalled crying after the visit and needing to discuss the
experience with a supportive colleague. She noted her colleague was very supportive.
As I drove away from the house at 10 o’clock at night, I rang my boss saying this
is what I’ve just been discussing; how dare you put me out here or something like
that. How could you do this to me? We talked through all the moral implications
until I was comfortable. She stayed on the phone until I felt comfortable with
what I’d said and done. (P3, nurse)
As this nurse further explained, at the time of this incident she was inexperienced
in EoL conversations. The distress stayed with her for some time after the event (P3).
Others within this team also evidenced support (P2, P6).
The other aspect of our team is that … people do try and keep an eye out for you
individually. The fact that you actually do care about the people you’re working
with. (P2, allied health)
And,
We actually are a very supportive team within itself. It’s the culture of the team.
People know they can blab to anyone and feel safe. (P6 doctor)
The interviews with this team consistently showed that participants sought
support from within their own profession (P7, P10 and P1). For example, one nurse
noted how she would seek support from another nurse in situations of moral distress
(P7).
I will go up to another nurse and where I have a little bit of rapport. Hey, I just
want a little bit of advice here to see if I can sort this out. (P7, nurse)
Support was also provided for younger team members through debriefing.
But if I have a younger team leader, then I see the moral distress for them. So I
do a lot of debriefing and I do a lot of background talking with them about how
you could have managed that better as a nurse, and what I would have done, to
get them through it. (P10, nurse)
Similarly, doctors would tend to discuss patient issues with other doctors.
Yeah, it varies from doctor to doctor. Generally, I think they discuss issues with
themselves. There are occasions where there has been a patient, we’ve all had
involvement with. We would share that conversation. If it is a patient that one of
our doctors is seeing exclusively and hadn’t been referred to us yet, then it would
be unlikely that they would discuss any issues with that patient with us. They
would discuss it with their own colleagues or doctors. (P1, nurse)
In addition, more senior doctors from within this team sometimes gave support
to doctors from other treating teams in moral-distress situations. The senior doctors
recognised the power imbalance for junior doctors.
Where we see the registrars and juniors getting distressed in tears is when they
feel that the patient should or shouldn’t have this treatment. They have spoken to
their boss and requested referral elsewhere should we say. It ends up with us
giving them consultations unofficially to support them in that dilemma, whereas
their consultant says, no, we need to do this, this and this. They’re quite distressed
having the family on their backs and not knowing how to negotiate with their
consultant and feeling in a position of less power than they should. (P6, doctor)
Support for team members was valued in this team. Participants clearly
identified junior team members as often needing support. In addition, support was
consistently and almost exclusively sought from colleagues in the same profession.
The strong hierarchical structure witnessed in this team may have been partly
responsible.
5.3.3 Barriers to Team Communication

5.3.3.1 Hierarchical Structure within the Team
Six participants (P1, P2, P3, P4, P8, and P9) identified a hierarchical structure
within this team. One participant (P8) stated “The hierarchy is very strong. It will
always be there, I’m sure.” Participants expressed different views on this structure but
considered it a barrier to team communication.
Yeah, to be honest, it is still hierarchical. We do have a strong medical element

here within palliative care. It is largely medically driven. It’s not necessarily a
bad thing, but it is just the way it is. (P1, nurse)
And,
Even in our reflective practice, we’ve talked about … wouldn’t it be great if that
hierarchy could be flattened a little bit. (P2, allied health)
The historical beginnings of this hierarchical structure were recognised, as was
the impact it still exerted on relationships between doctors and nurses.
I feel that the lack of support that we get here is reflective of the age-old doctor-
nurse relationship. The hierarchy from which nursing in Australia came from –
the English model – where nurses were doctors’ handmaidens. I feel that a lot of
doctors have outgrown that. But a lot haven’t … It is very much an old-fashioned
doctor-nurse thing. You are a female nurse. You are just a nurse, is what I have
got recently. Write this down … you are just a nurse. Not a woman with thirty
years’ nursing, a master’s, and life … yeah. (P3, nurse)
An allied-health professional also recognised the structure was evident when

suggestions made on EoL patient care were negated (P4).
There is a very clear hierarchy within our team. We are very doctor heavy, really.
Like, they are all still amenable, although sometimes our suggestions will be
negated and they will go, oh no. (P4, allied health)
Further, the relationship between the different professions in this MDT was
evident when a nurse discussed the importance of presenting handover in the correct
way to achieve respect with the hierarchy, and from the doctors.
If you don’t conform to that type of presentation style, you lose a sense of trust
from the doctor as to what you exactly are wanting. It can come out a bit confused
and it won’t come out with the care that they need to decide based on that
information. If that is not done that way, they tend to question what you’re saying,
or they will ask questions. (P1, nurse)
Team respect and support were important to team relationships; therefore,

conforming was important. An allied health participant (P2) noted respect was needed
within the hierarchical structure to value each discipline and what they could add in
situations of EoL care.
I think really valuing the multidisciplinary roles and that respect for each other.
There have been situations where they haven’t felt that clinical judgement has
been heard or followed. Decisions have been made against what they felt and that
caused high levels of distress. I think we’ve got to constantly remember we are a
multidisciplinary team and that we need to value and respect what each discipline
brings. (P2, allied health)
The hierarchical structure led to a participant feeling they needed to report on
situations to gain approval and that the structure decreased the autonomy they were
accustomed to in other workplaces.
Yeah, it’s quite medicalised. A lot of people say that. I haven’t really worked – I
did community prior to this where you’re pretty much your own boss. A lot of
people remark to me that they do work very much within a medical model here.
I’ve definitely seen that. (P9, nurse)
Further, conflict occurred when the authority position in this hierarchy suggested
a different pathway for the patient’s care (P2). The participant felt this contributed to
their moral distress in the situation.
I’m very much big on honouring team authority and leadership. So that creates
distress, when that authority position is saying do something differently and
everything else is screaming no, this isn’t right or fair or good practice. This isn’t
according to our values as a service, as a profession, personally. (P2, allied health)
The historical origins of the hierarchical structure in this team still influenced
the way in which the MDT functioned. Nurse participants highlighted that presenting
information needed to be done in a certain way to maintain the respect of the doctors
within the MDT. At times, suggestions made by nurses regarding a patient’s care were
negated, resulting in the nurses feeling their opinions were undervalued.
5.3.3.2 Poor Practices in Team Communication

Poor communication and fragmentation in communication within the team was
identified as affecting EoL patient care. Information needed to be shared so all team
members were working toward the same goals for the patient. Poor communication
and a lack of respect did not contribute to what this nurse saw as core communication
skills in palliative care:
It came down to a lack of communication. It came down to respect. It was not

really there. There wasn’t a lot of supervision as well, of juniors and registrars.
There was an infiltrated culture of … not too sure if I can term it with a word. It
seemed to be in direct opposition to what palliative care is all about, which is
compassion and empathy and these core communications skills. It seemed to be
in direct opposition to those key attributes. (P1, nurse)
Poor communication contributed to a patient and their family not being clearly
informed of the role of the palliative team. When the team visited this patient, the
family became upset because they did understand the role of this team.
You walk in and, oh, we’re getting another team to help you with your pains. You
go in to do your normal palliative spiel presuming that the family have been
advised. Then you have this family gasp … does that mean we’re dying
tomorrow? Yeah, so there still is that misinterpretation of what palliative care is
about. (P6, doctor)
Poor communication was also attributed to the fragmentation of the team. The
community part of this team was geographically located kilometres away from the
inpatient unit. Communication delay within the community team resulted in their being
unaware that one of their patients had been admitted to hospital. This was associated
with powerlessness.
The communication is … that fragmentation makes you feel a bit powerless.

You’re not in control. The idea of continuity and being there and standing with
them … that’s what you aim for. The fragmentation doesn’t often allow that, even
within our team. There is a lot of fragmentation unfortunately. (P2, allied health)
Fragmented communication processes resulted in moral distress for an allied-

health participant (P2). The participant was not notified of a patient’s admission and
thus was not able to provide support for the family when most needed when the patient
died.
He died and he was here and that was the time they potentially needed me the
most. I wasn’t there for them. I just felt I really let them down. I saw her yesterday
and all I could say to her when I had that call was, I have to look into why I didn’t
know. The first thing she said to me when I saw her yesterday was did you speak
to the people and work out and get it fixed. It obviously was an issue for her as
well. That was something. You still feel like, gosh, the time people need you the
most and you still can’t even be there. (P2, allied health)
Changing the system to improve communication was cited as difficult, resulting

in feelings of powerlessness.
Sometimes you feel powerless to have an impact on the system. A lot of those
things are about communication issues and not in our realm to do anything about.
How do I have an impact on communication systems of some teams? (P4, allied
health)
A further distressing aspect of poor communication practices identified by

participants was the use of certain language and labelling of patients and carers.
5.3.3.3 The Language and Labelling used in Team Communication

Participants stated labelling of patients and family members contributed to moral
distress in this team. One participant explained a situation in which the patient was
labelled as a bit histrionic; the patient’s request for admission to the palliative care unit
was denied based on the labelling (P1). This patient subsequently died at home alone,
which resulted in moral distress for the participant. This nurse further explained how
labelling of patients and carers could poison interactions with health professionals.
I found a lot of the comments were derogatory and were quite demeaning to the
patient and family. Because of this handover an air developed, the patients were
already termed as difficult, or the family were termed as aggressive, or they were
boxed into certain definitions. It almost poisoned the interactions with nursing
staff and whomever the handover had filtered to. It kind of poisoned interactions
and I thought it was extremely unfortunate this culture and behaviour had
infiltrated the palliative care unit. It really went against the core values of what
palliative care is and any type of health industry. When you’re doing that, it goes
against the core ideals. (P1, nurse)
Another participant described a situation in which a patient’s carer was labelled.

This participant knew the carer had been in a difficult situation before with a loved
one dying and consequently was on edge and nervy. The participant saw her role as
explaining this to the nurses who were labelling the carer.
When I said to the staff she’s not. This is the thing she is carrying. Then
everything goes quiet. I think that is a big role of social work … try and help
people understand what else might be happening in people’s lives and reduce the
labelling. (P2, allied health)
Some team members saw their role in the team as trying to bring context to a
situation, for example, explaining why a patient or family member may act in a certain
way. A participant highlighted the way in their profession uses language, and how this
could differ from the communication style of other professions within the team.
I think sometimes social work can be … there might be a little bit of
misunderstanding because of the language we use. Doctors and nurses have to be
very let’s get to the point and get the information out, whereas social workers
might talk a little bit more broadly and not want to put labels onto people, and try
to give context to the situation, contributing factors, articulate how they
understand their problem and situation. There is a lot of information, but it is not
in a clearly concise format. (P2, allied health)
In another situation of patient labelling, a patient died at home after being denied
hospital admission; this participant felt it was the result of the labelling of the patient:
I felt like she was labelled. Oh, she cries on the phone, and that’s how she always
is. I think we probably missed a major thing for her. The woman’s coming to us
dying. She didn’t want to die on her own at home. She didn’t want to do that. (P9,
nurse)
Participants noted labelling of patients and their family affected the treatment
they received, which contributed to the experience of moral distress for these
participants in their clinical work.
5.3.4 Theme Two Summary

The participants in this EoL care team reported the value of supportive and
intentional communications through team meeting meetings and handovers. Team
members valued a place to discuss issues and voice opinions and to allow consensus
to be sought on EoL care and decisions for patients. Support from within the team was
critical to everyday practice. This support was consistently sought within one’s own
professional group. Junior staff in this team also received support from other team
members.
Several participants reported that the strong hierarchical structure in this team
reduced their autonomy for decision making when providing EoL care and sometimes
resulted in negation of their views. Participants recognised presenting information
within this MDT structure needed to conform to the expected conventions to achieve
respect. Poor communication within the team promoted a lack of respect for other team
members. Fragmentation of communication due to geographical location of the team
units was also a problem. Some participants identified that labelling of patients and
carers contributed to both poor EoL patient care and the experience of moral distress.
Labelling was evidenced to influence care decisions which at times were detrimental
to the EoL care of the patient and poisoned interactions between patients and
professionals.
This theme encompassed the findings on both enablers and barriers to

communication within this MDT. Participants considered poor communication
contributed to situations of moral distress within this palliative care team. Theme
Three more deeply examines the individual moral-distress experience, the reactions to
this phenomenon, and the strategies used to ameliorate the experience.
5.4 THEME THREE: THE MORAL DISTRESS EXPERIENCE –

REACTIONS AND STRATEGIES
5.4.1 Introduction
Palliative care involves including families and patients in EoL care decisions and
this creates experiences which contribute to moral distress (Theme One). The team
communication and interactions within the team contribute to moral distress but can
also provide support in situations of moral distress (Theme Two). This theme examines
the definitions of moral distress provided by participants and some of their significant
experiences of moral distress. All participants from this team gave examples of moral
distress. Several gave multiple examples of their experience. Many participants were
not able to clearly define the phenomenon and had not associated the term moral
distress with their experience.
The reactions to moral distress discussed by participants included feelings of

failure, blame, inadequacy, and uselessness, all of which contributed to
demoralisation. A feeling of having “let the client down” was cited, along with
powerlessness. The experience was also described as debilitating. Participants’
adaptive coping strategies for moral distress were
• using guidelines, speaking up, and seeking support
• rationalising
• taking a break.

Several participants claimed to have heard of the term moral distress but were
not able to articulate clear definitions (P1, P3, P4, P6, P7, and P9). Others, although
they had not heard of the term, provided clear examples of the experience (P2, P5, P8,
and P10). One participant associated moral distress with the “grey areas of palliative
care” (P3).
I refer to it as the grey areas of palliative care. By that I jointly mean all the areas
that raise different feelings in different people, depending on where you stand.
(P3, nurse)
While not a clear definition, it highlights the difficulty when opinions on patient
care differ. Another participant described this as creating a tension in the clinical
setting, with often a variety of opinions on the correct treatment for a patient.
I think for me the big issue is the tension between what you would like to be doing
for people in terms of your own personal and professional practice – ethics, values
that you bring to the job and the knowledge base. Then what you can practically
and physically do in your role with limited resources, in the time factor. That is
the constant tension there. (P2, allied health)
Pressures of resource constraint created challenges in the clinical practice setting

which contributed to moral distress. The feelings associated with moral distress and
the emotional impact was often how participants created definitions.
Moral distress to me is having a negative emotional impact to the work you do

and the patients that you see, or having a conflict within yourself with the
processes involved in undertaking your work, whether inpatient or outpatient
work. (P1, nurse)
A medical participant included the ethics and legal perspectives of work and
their own belief system in their definition of moral distress.
There are two aspects to it. There is the difficulty with medical ethics and
medicolegal aspects in our day-to-day work. Then there are the other parts where
you are struggling with your own belief system versus that of your patients,
colleagues, or community expectations. It sets up a dilemma between how you
work through your own belief systems versus someone else’s without doing
judgement calls. (P6, doctor)
Despite the differences in the way moral distress was either defined or
interpreted, all participants discussed examples of moral distress and the way it
affected their everyday practice.
5.4.3 Emotional and Behavioural Responses to Moral Distress
Several participants highlighted the emotions they had witnessed or felt in
response to moral-distress situations, including feelings of failure, blame, inadequacy,
uselessness, and demoralisation, and feeling dreadful, responsible, and as though they
had let the patient down. Moral distress was also described as debilitating, and feelings
of we should have done more arose. Developing a close relationship with the patient
was important to some participants; some identified themselves with the patient. The
denying of pain relief was a further scenario in which moral distress arose and led to
frustration. These responses to moral-distress situations confirmed the importance of
this phenomenon for the individual. Failure was experienced when a poor outcome
occurred for a patient.
Given the extremely poor outcome and the fact that we are first and foremost
advocates for patients, and that failed … that kind of rocked that nurse to the core.
She felt that she failed as a nurse. (P1, nurse)
Feelings of blame, inadequacy and uselessness were cited, which consequently

led to feelings of demoralisation in a situation of moral distress.
I didn’t talk to anyone. I felt it was my fault. I should have perhaps looked at the
list of who was in the hospital, rather than racing off to do home visits straight
away. I think, I just thought, well … everyone else is struggling and I didn’t want
to burden anyone else or make anyone else feel badly. And you feel like you’re
inadequate and you’re useless and what’s the point of you being here and how
much value adding are you doing? Yeah, constant feelings of demoralisation
when you can’t do the job you’d like to be doing. (P2, allied health)
This participant also stated how they felt when advised by their manager they
could not make any further visits to a client. The service allowed only three home visits
to clients, which resulted in moral distress and feeling that they had let the client down
(P2).
I felt dreadful and I felt I had let her down. I felt professionally that I wasn’t
valued or respected. I couldn’t make that clinical decision. I thought it was
counterproductive and against the values of palliative care. (P2, allied health)
Participants identified feeling responsible for patients when they did not agree
with decisions made at EoL.
They have an impact on you, and you feel responsible. (P4, allied health)
One participant mentioned feeling powerless when they could not change
situations which had occurred (P4). Moral distress was also identified as debilitating
(P10).
I think moral distress can be very debilitating if you don’t know how to manage
it. (P10, nurse)
Participants identified moral distress occurred when they felt more should have
been done for a patient. One nurse had developed a close relationship and rapport with
a patient over time, and their untimely death led to feelings of regret.
The gentleman was independent with care and wasn’t requiring an NGO [non-
government agency]. He didn’t have a lot of physical symptom issues but had a
lot of existential distress. Through late and wrong diagnosis, it kept on going. A
lot of anger essentially. All of us spoke to this fellow. One of our nurses spoke to
him more often over many months. So, they developed quite a rapport with him.
We all knew him and knew of his case. He was always a high suicide risk as well.
This gentleman ended up killing himself eventually. As you can imagine, there
was a lot of moral distress as a result of that. Feelings of should we have done
more, what could we have done, should we have got someone involved, should
we have talked to family earlier … there was a lot of those questions. (P1, nurse)
Participants cited the development of close relationships as contributing to moral

distress. Another nurse identified “you get to know” the patient through spending time
with them and their families and feel a connection to them (P8).
I find that harder to deal with; you see them when they are jolly, and you get their
symptoms under control; they go back home and then they come back again and
then go back home again. You have time with them to get to know them and their
personalities and then they change. I actually find that sometimes really hard to
deal with, and I have to sometimes stay away from that room. Because it’s too
hard to be, even though you have a good rapport with the family and with the
patient, it’s hard to be. (P8, nurse)
This closeness resulted in moral distress when EoL care was not perceived as in
the best interests of the patient. Avoiding contact with the patient became necessary to
deal with this moral distress. Moral distress was highlighted when participants could
identify and had a commonality with the patient.
A young gentleman my age, I heard about him being up here, and he was a very
recently diagnosed prostate cancer. How he got diagnosed was that he got tingling
in his legs as it took his legs. Within a few days, he was paraplegic. He was told
he had other things that indicated that treatments would not be curative, or even
very successful with regard to delaying things. He was a very alternative man. He
was a bushie … a fruit picker, walked around with grass sticking out the side of
his mouth and a fag out the other side … He was up here, and he decided within
twenty-four hours that he was going home. He had no legs. They said, you can’t,
and the hospital system very much got in there. You can’t, you can’t, you can’t.
When I heard about it the next day, he was dragging himself on his hands, out of
hospital. I got him a wheelchair and sent him home and got him home. He went
against medical advice and they did not want to send any community follow-up,
because he had so blatantly ignored the system. That was very distressing to me
that they could be so judgemental and so unaccommodating for people who do
not conform to the system. To me, I love these people who don’t conform, and I
will bend over backwards. (P3, nurse)
This situation was described as very distressing and the nurse believed a different
approach was needed to address this patient’s EoL care. She did not agree with the
way in which the system was treating the patient and experienced moral distress in this
encounter. The nurse identified this approach as paternalism.
Yeah, I think attitudes of paternalism, where you feel you know better for
someone than they know for themselves. (P3, nurse)
Another nurse also cited differences in opinion on treatment as contributing to

moral distress. This nurse felt the professional wasn’t listened to due to prior beliefs
about the patient. She noted the distress lasted for some time after the event.
The patient ended up dying at home by herself and lived by herself as well. The
nurse was extremely distraught by that, not only for the patient, but the fact that
she felt she’d done a clinical review and she was trying to advocate for the patient.
She wasn’t listened to because there were prior held beliefs and was distressed
by that event and was distressed for some time and is still coming to terms with
how to respond now in similar situations to people. (P1, nurse)
This situation was clearly identified as contributing to ongoing moral distress.

There were many vivid stories relayed in the interviews, some of which had occurred
many years previously.
There were several narratives relayed of moral distress over pain relief for
patients. One doctor stated pain relief was sometimes not given, even though it was
clearly ordered.
They think it’s wrong and they’re going to kill the patient, or they withhold
medications on the night shift. Even though we’ve got it there and we’ve told the
patients they can have it every two hours, they will say: no, you’re an addict; no,
you don’t really need it; no, your pain can’t be that bad. That is very frustrating.
(P6, doctor)
There were reports that pain relief was not given when a professional lacked
competence in EoL care and an understanding of patients’ needs. An identified lack of
competence in some professionals can result in moral distress for their colleagues. This
participant stated this often resulted in problems for the junior nurses working with
such a person, and led to situations where patients were left in pain:
If you get, for instance, a nurse from ED [Emergency Department], or even the
medical ward, whom has no really good understanding of palliative care, they’re
very hesitant to give anything. If they do give something, it would be the minute
amount, which won’t even be effective. Therefore, you end up chasing your tail
and that can actually be dangerous. (P5, nurse)
This nurse (P5) also stated she would not argue with a junior doctor but instead
choose to confer with a more senior consultant to prevent moral-distress situations
arising.
Normally we just have them write up all these drugs, so that we’ve got something
to use. If they’re not prepared to write up reasonable medication, they’ll just ring
a consultant. I’m not going to argue with them just because they don’t have the
knowledge. (P5, nurse)
Denial of pain relief and lack of professional competence in EoL care concerned
these participants. They wanted to provide adequate pain relief for the patients in the
EoL period and experienced moral distress when adequate pain relief was not ordered
or not given.
The participants identified many situations in which they encountered moral

distress in providing EoL care; their emotional and behavioural responses were clear.
The need to manage moral distress was identified in this team. Participants suggested
some adaptive coping strategies, which appeared to support them in dealing with moral
distress.
5.4.4 Adaptive Strategies used for Moral Distress in EoL Care

In response to moral-distress situations, some adaptive strategies were identified.
These included using guidelines to support clinical practice, seeking support from
colleagues, speaking up and rationalising, and seeking support from peers and one’s
family.
5.4.4.1 Using Guidelines, Speaking Up and Seeking Support

While only one participant discussed the use of guidelines and protocols, they
stated these could be used to manage difficult situations in EoL which involved family
conflict. One of these strategies involved support by another professional during
conversations with families.
Put in very clear guidelines and documents. Always have a witness. We have our
little protocols that guide us, and we go through to help the teams to manage those
very distressing situations. (P6, doctor)
These guidelines and protocols were designed to support the professionals in

their practice and provide a guiding document in dealing with difficult conversations
with families. Participants also viewed the ability to speak up in situations of moral
distress as important (P4, P3, P8). The culture was cited as limiting a professional from
speaking up.
I think everyone in the team speaks up, but sometimes the nurses are less likely
to say anything because of that culture between doctors and nurses. I think that
has an impact sometimes that creates tensions, because the doctors really rely on
the nurses. (P4, allied health)
While advocating for the patient was important, a fear existed around speaking
up.
I will advocate for palliative patients quite fearlessly, which is big for me because
I am a big coward when it comes to doctors telling me off. (P3, nurse)
And,
Well I am not a very confident person in the first place, and I try and avoid conflict
if I can. But I can be a bit like a dog with a bone if I feel there is something that
specifically does need to be sorted. I will keep pushing the point. (P8, nurse)
Participants found speaking up difficult at times, especially if there was a
perceived lack of confidence or knowledge.
Yeah, they went against her wishes. I didn’t agree. I don’t know if I would argue
it or not. It’s very difficult when you’ve got the specialist telling you this is what
you have to do. I wasn’t sure whether I was right or not. When they’re saying
until the attorneys come in, I thought, is that right? I didn’t know. I didn’t feel my
knowledge is good enough in that area to argue it. I don’t know. I think I am still
stewing over it. I think I would hope – I saw it as a bit of learning curve for me
as well. I think I perhaps have to be a bit more assertive when it comes to things
like that in future. (P9, nurse)
The nurse identified the experience could be used for learning to assist in being
more assertive in future situations of moral distress (P9). Another nurse noted
reflecting on a situation was useful to think about what could have been done
differently for a better outcome (P5).
There have been a couple times where we’ve hit horrible situations. Yes, it just
probably makes me a bit sad. You kind of think how I could have done it
differently, or better, or what else could I have done to achieve a better outcome.
You do think about that because you don’t like those scenarios. (P5, nurse)
Support from family was useful in situations where moral distress was
experienced.
You go home and you, well, my husband’s great. He just listens, he used to be a
policeman, so he understands, but you just go home and vent, or you vent to one
of your colleagues. Yes, it does, but you also think, how I could have done that
better. I could have pre-empted that. Of course, you do. Like, I really focus on
everybody should be allowed to die with dignity, and so therefore if I don’t
achieve that, or it’s about the other family members and what they will remember.
It will have a big impact. You don’t hear it as much now, but there were lots of
stories from people who had been there when their mother died and how awful it
was, and they wouldn’t give her pain relief and they wouldn’t give her this. So,
you know what I mean? (P10, nurse)
Participants often sought support from colleagues to debrief and saw this as an
important aspect in dealing with a situation of moral distress.
I heard the other day about the patient, who died, and it sounds like he had a heart
attack; but it was bizarre, and the two staff that were on, were quite traumatised
by it. They talked it through and debriefed and things like that. I think it’s when
you don’t get those opportunities, or someone shuts you down and says, oh well,
you’ll be right, or yeah, yeah, I had a hard shift too. (P10, nurse)
Along with seeking support, another strategy highlighted was the rationalising
of actions in moral-distress situations.
5.4.4.2 Rationalising
Participants used rationalising to support their actions in situations of moral
distress. For example, they stated they told themselves that they had “done the best
they could in a situation” (P3).
If any situations that involve moral distress have … the only thing I can think of
that I do to avoid or minimise it, is make sure I deliver the palliative care as the
patient wants it. I advocate for them and I listen to them very carefully and don’t
try and put them in a box. If I can be with them exactly where they are and hear
them and provide for them as they want, that minimises any distress I might have
about the situation. When I go to bed at night, I can honestly feel I have done the
best I can for that person. (P3, nurse)
Another participant also used rationalisation in a situation of moral distress.
I have seen people suffer, refusing any comfort. That is their personal journey.
My job then is to take a big breath, sit beside them, and make sure that they know
they have alternatives that are acceptable to them. As long as I have done that,
that is all I can do. (P3, nurse)
These adaptive strategies assisted individuals to cope with the moral-distress

situations they faced. A further response identified in this team was taking a break.
5.4.4.3 Taking a Break

Another response to moral distress was the need to take a break from their career
(P3, P10). Both participants talked extensively about the accumulation of episodes in
which they had felt moral distress; this accumulated stress eventually resulted in the
need to take a break from working.
Yes, it doesn’t have to be that big. But the first time, I have never forgotten it,
because she was just like me. She was my age. She had a son his age. She lived
out in the bush, way out in the bush. Had the same sort of friends as I did. Wore
the same sort of clothes. A bit of a hippie and a bit alternative. Here she was dying
in front of my eyes. She was the straw that broke the camel’s back for me. She
was a delightful woman, but it was … the people with whom you can really see
yourself, break through all your boundaries. When I came back here in December
last year and started working between here, the one thing I noticed was how much
easier it is to provide palliative care with a uniform on. I take it off at the end of
the day and away it all goes. (P3, nurse)
This nurse identified she had taken several breaks in her 20-year career due to
the moral distress she had experienced. Another nurse also discussed how she had
taken six months off recently to have some time away from the work environment. She
felt years of moral distress had accumulated and she either needed to retire or have a
break. She had now developed a strategy to detach from work at the end of her shift.
I think moral distress can be very debilitating if you don’t know how to manage
it. I have people say I am not managing it well and I don’t sleep at night, I take it
home. I say, well, what I do is from half past two in the afternoon, I am starting
to think, I am out of here, so I’m starting to think I am handing on the problem.
So, by the time I walk out of here, so, by quarter past three I am starting to think
about other things. Yes, there are days when you do take it home with you, but if
that is the abnormal and not the normal, then you can cope better. (P10, nurse)
These participants (P3, P10) discussed that the impact of moral distress led to
the development of adaptive strategies to deal with the distress. Taking time away from
the workforce may be considered either an adaptive or a maladaptive strategy. These
two participants felt it helped them to cope better and stay in the workforce longer.
They had considered retiring or leaving because of ongoing moral distress and a break
from their career allowed them to continue working.
5.4.5 Theme Three Summary

This theme provided examples of the moral-distress situations encountered in
everyday practice in providing EoL care in a palliative care team. While clearly
defining moral distress was difficult for participants, they readily related situations in
which they had experienced this phenomenon. Scenarios included feeling not enough
was done for the patient at EoL. Several participants stated closeness to patients and
identifying with patients contributed to their experience of moral distress. Opinions on
the treatment of patients and what should be done for them were conflicting at times.
Witnessing patients in pain and a lack of others’ professional competence was also
identified as contributing to moral distress. The effects of moral distress and the
emotional responses identified included feelings of failure, blame, inadequacy,
uselessness, demoralisation and feeling dreadful. One participant felt as though they
had let the patient down. Moral distress was consequently labelled as debilitating.
Adaptive strategies used by participants to deal with their distress were explored.
These strategies included using guidelines in practice, speaking up for what the
participant believed was the right care, supporting patients’ right to autonomy in their
EoL care, using the support of family and colleagues to debrief, and rationalising you
had done the best you could in situations of moral distress. Taking a break from the
workforce was considered an adaptive strategy to manage long-term moral distress.
This team further discussed reflective practice as a way of dealing with moral
distress in EoL care. This practice was formalised in this work setting and was
consistently used by almost all the participants. Reflective practice is explored in
Theme Four.
5.5 THEME FOUR: REFLECTIVE PRACTICE AND SUPERVISION
5.5.1 Introduction
Professionals in this MDT identified participating in a reflective practice group
or in personal supervision as options for discussing and mitigating the effects of moral-
distress situations in the provision of EoL care. Most agreed reflective practice was a
safe space in which they could express concerns or debrief on situations which had
occurred. The reflective practice group was facilitated by a member of the MDT who
provided guidance for the sessions. Participants reported they were given time to
complete their work and then attend the group. However, one participant stated they
avoided this reflective practice group, preferring collegial support as a coping strategy.
The use of personal supervision was cited as a form of reflective practice. The
professional would seek an independent counsellor, often a psychologist, and attend
regular sessions to debrief and discuss their work. These participants stated this form
of reflective practice was commonly used within their profession and actively
encouraged among their peers. However, only medical and allied-health professionals
used this service.
5.5.2 The Reflective Practice Group
The reflective practice group met fortnightly and was attended by nurses and
allied-health professionals if they were working in the palliative care unit at the time.
Discussing moral distress was highlighted as important in these sessions.
We have a thing called reflective practice, where we sit together in a room once
a fortnight and discuss work-related issues. It does really touch on moral distress
and impacts we are having emotionally or personally with work. (P1, nurse)
It was important the group was facilitated by someone who professionals could
relate to and who knew how to facilitate the conversations.
Reflective practice generally is very good, especially if it is facilitated by

someone who knows how to press buttons and who is astute as to what is pressing
our buttons at the time. (P3, nurse)
Participants shared the benefits of reflective practice for moral distress (P1, P9).
A situation in which a patient committed suicide resulted in moral distress within the
team. This nurse outlined how this situation was discussed in a reflective practice
session:
Reflective practice was a great place for that and for us to have a discussion about
that. Not about what we should have done or what we didn’t do, but how we felt
about the process, and the fact that we knew this gentleman was a high suicide
risk. We discussed it with the doctor as well. There was nothing we could ever
do. It was more that we listened. He probably lived longer than he would have
otherwise. That was a great forum for us to discuss that case and discuss our
emotions, feelings, expectations when we’re dealing with patients like that. (P1,
nurse)
Another nurse also found the reflective practice group useful in discussing moral
distress. A distressed patient had been denied admission to the palliative care unit,
which culminated in the patient dying at home alone. As the last contact with the
patient, this participant felt partly responsible for what had occurred.
I did talk about that one in reflective practice, because yeah. (P9, nurse)
Two other participants (P2 and P4) further highlighted benefits of the reflective
practice group for the team.
We have a wonderful aspect of work which is called reflective practice. It is
amazing how beneficial that is. It is remarkable because, every time, people are
going a thousand directions. You just think, I can’t make time for this. He’s [the
facilitator] just patiently, resolutely committed to it. We extract ourselves and we
meet together, and at the end of it you think, wow, that was beneficial. +That is
probably where the issues of moral distress are spoken of, in a group setting. I
think people carry it individually. Without perhaps that process, it may not be
discussed as a team. (P2, allied health)
And,
We might discuss them in reflective practice. It’s something that has been set in
place by psychology and it happens all over the hospital. So it’s an opportunity
for teams to get together, not the whole team; with us, it’s the nurses and allied
health, and basically discuss, if there’s a theme or something, like at the moment
it’s all about the move. Or if people have something that they are feeling or
finding difficult, if they feel comfortable discussing or something. So, it’s sort of
a facilitated discussion. (P4, allied health)
Another example of a reflective practice group was named “How are you
travelling Tuesdays” (P5). This group was also facilitated by a member of the MDT.
One participant identified it as a forum in which palliative care team members could
reflect on aspects of their work that lead to moral distress.
If we have had something happen during the week, we have a session on Tuesdays
called “How are you travelling?” And we will bring that up there and talk about
how you feel. We will go around the room and ask people about it. (FG1)
Although the nurses and allied-health professionals in this MDT attended the
reflective practice groups discussed above, professional supervision was also
highlighted to deal with moral distress.
5.5.3 Professional Supervision

Professional supervision was identified as a forum for debriefing and reflective
practice. This involved finding a suitable therapist who could be used for debriefing in
regular sessions.
The things that I know – what can get to me – and I talk to my counsellor about,
we insist that our staff have the ability to self-reflect and have counselling …
Yeah, we call it debriefing. It is supervision for us. For us, it is part of my thing
to my doctors. I have done it often over the years and have found it beneficial.
(P6, doctor)
This participant highlighted she supported junior team members to participate in

supervision as a way of confronting issues of clinical practice (P6).
We insist that our staff have the ability to self-reflect and have counselling. Most
of the consultants do it privately with a psychologist or psychiatrist that we trust.
We encourage the junior doctors to attend and the registrars to actually attend, so
they get into the practice of self-reflection and being aware of their own emotions
and needs and where that distress is coming from. Part of our teaching to the
juniors is to help them recognise when that distress is starting. (P6, doctor)
An allied-health participant (P4) noted supervision was a common part of

practice within their profession.
We have supervision as part of our professional practice. We can do it privately

and other professionals do it. We go and talk to them, and we would discuss our
work. They are like a mentor and someone you can go and talk about things. They
are not your line manager and it’s confidential. It’s something we have always
done. (P4, allied health)
Almost all participants from this palliative care team identified the benefits of
reflective practice or supervision as a way to deal with issues of moral distress in their
clinical work. One participant (P8) stated she deliberately organised her work roster to
avoid attending reflective-practice sessions because she did not agree it was valuable
to practice. This nurse responded that she used her colleagues as support to debrief and
to discuss situations of moral distress.
Last year I deliberately made it so I don’t have to go. There are people that talk
and talk, and they talk a lot and they say what they want, and they get a say and
you don’t get to say anything. So, I kind of felt that I walked away thinking, I
hear what you are saying, but nobody hears what I am saying. So why bother
going? Some people are much stronger people. Whether it should be more that
everyone gets to talk for a couple of minutes on one subject and then other people
can the same amount of time to report back. But, more often than not, you don’t
say too much because, even though people say this does not come outside of this
group, it does. So therefore, what is the point? (P8, nurse)
5.5.4 Theme Four Summary
Reflective practice and supervision were identified in this MDT as a forum for
discussing issues of moral distress in providing EoL care. The reflective-practice
sessions in this palliative care team were formalised in this organisation. Significant
events of moral distress were identified by participants and discussed in the reflective
practice group. The benefits of this practice were noted. Participants respected the
facilitator of this group. Other members in the MDT used professional supervision:
they sought private counselling and mentoring to support their clinical practice in times
of moral distress. In addition, they encouraged other professionals, especially more
junior members of the team, to use supervision. However, one participant did not
consider the reflective practice group beneficial.
5.6 CONCLUSION TO THEMES IN CASE TWO
Theme One identified the importance of decision making in an integrated

palliative care service providing EoL care. Decision making included the MDT, patient
and family perspectives. Families were often responsible for changing the care
pathway, which contributed to moral distress for participants in this team. The
expectations of family did not always coincide with service objectives to provide
comfort care, which contributed to moral-distress situations. Family conflict created
difficult situations in EoL care, and negotiation skills were recognised as important by
professionals. Patients and families often made requests for assisted dying in EoL.
Participants dealt with these requests by identifying legal ramifications and their duty
of care.
Theme Two concerned communication processes within the team and identified
enablers and barriers to productive team communications. Team meetings and
handover were crucial in enabling intentional communication and in providing team
support for colleagues in situations of moral distress. Barriers to constructive
communication included the hierarchical structure of the team, along with loss of
autonomy and respect and the fragmentation of the team resulting from the separate
locations of the team units. Labelling of patients and carers contributed to moral
distress in the team as it allowed judgements of patients and carers.
Theme Three highlighted the many moral-distress experiences within this case.
While definitions of moral distress were not clearly articulated, all participants
discussed situations of moral distress in their clinical practice. These situations arose
around a lack of patient care, a lack of patient autonomy, and a paternalistic approach.
Participants identified that close patient relationships could contribute to their
experience of moral distress.
Moral distress caused intense emotional experiences, which included blame,

feelings of inadequacy, and feeling useless, demoralised and powerlessness.
Experience of moral distress was also considered debilitating. Patient advocacy was
linked to these experiences of moral distress. Adaptive strategies identified were the
use of guidelines, speaking up and rationalising, reflecting, seeking support and taking
a break from the workforce.
Theme Four identified reflective practice and professional supervision as

beneficial in dealing with moral distress. This workplace supported a facilitated model
of reflective practice which was valued by most of the participants. Situations of moral
distress from everyday clinical practice were reflected upon, which participants felt
made a substantial contribution to mitigating the effects of their experiences.
Professional supervision was discussed as necessary to professional practice and
useful in situations of moral distress. One nurse avoided the reflective-practice
sessions, preferring peer support as her coping strategy.
5.7 PERSONAL REFLECTION ON CASE TWO
This case comprised ten individual interviews and one focus group from the
palliative care team. These participants provided EoL care to a large population of
community-based and inpatient clients. The clinical work was challenging and
presented many situations in which moral distress was experienced. Throughout these
interviews, I was reminded of the multidisciplinary approach to this research. As I
interviewed a cross-section of professionals, I became aware of the different views
within the MDT. It was important to remain reflexive when interviewing the different
professions, and to understand and examine my own biases and nursing background.
After each interview was completed, I compiled my own field notes and
reflections. This assisted me in searching for emerging themes and examining how I
felt about the information. I was constantly aware of the multidisciplinary viewpoints
on situations of moral distress as they emerged. The interviewed nurses described
situations which resonated with my own experience and the moral distress these
situations could generate. Allied-health participants also raised situations I could relate
to, but an interesting aspect of this case was their views on some of the language used
within the MDT. They considered this labelling of patients detrimental to their care.
The labels resulted in patients or carers having judgements made about them. The
allied-health participants felt labelling impeded constructive relationships with the
patients or carers. After these participants had identified the labelling, I became aware
of it as I interviewed the other professionals. This factor highlighted the way in which
different factors contribute to moral distress for the various professional groups within
a team.
The participants in this MDT showed empathy in caring for patients at the end
stages of their life. I witnessed this in the interviews through the way the participants
talked about patients they had cared for. This empathy was a motivator for prosocial
behaviour for providing quality EoL care. The participants showed a passion for the
work they did and a true caring when they talked about patients. As they spoke of the
patients, they often recalled their names and relayed in detail characteristics particular
to a patient, such as the way they spoke or dressed. Some participants identified
closeness to patients and identifying with some patients who were similar in some way
to themselves. This facilitated role taking, an important element in empathy and being
able to put oneself in another’s position. One participant described empathy in this
way:
It is putting yourself in another person’s shoes. Try to visualise or imagine what

that person’s experience would be if you were sitting or lying where they were. I
think that is a very broad and basic definition of what empathy is. (P1, nurse)
This empathy was also shown in participants’ belief it was important to create
lasting memories for patients and their families, and to show patients the care they
needed. Several participants used a common term to describe admitting the patient into
the in-hospital unit and getting the know them and developing trust while gently
guiding the patient and family toward EoL. I will not disclose this term here to protect
the identity of the palliative care unit. One doctor noted it was important to keep in
mind the reality for patients and families who had never been in this situation before.
I have to keep reminding myself, having done this for 30 years, that this is the
first time the patients and families have approached this. (P6, doctor)
Participants recognised that the professionals were accustomed to dealing with

the process of dying but that this was a new and daunting process for families and
patients. The relationship and association with the patient contributed to the moral-
distress experience. A nurse explained their relationship with patients in this way (P3):
You walk their journey with them. Honestly and openly walk their journey with
them. Listen to them cry. I don’t know how else to put it. It almost becomes a
symbiotic relationship. I am absolutely there for them. I drop my ego and any
rules I may have are gone. (P3, nurse)
This comment showed the metacognitive ability of the participant to understand

what the patient and family may be experiencing. Throughout the interviews,
participants showed a range of emotions when relaying stories of moral distress.
Several participants needed to pause the interview and take a few minutes break. When
this occurred, I reminded them of the option to stop the interview. All continued to tell
their stories and show emotion and caring for the patient they had known.
The effects of moral distress were described, as were strategies used by

participants to deal with the distress. Two participants articulated their need to take a
break from the workforce to rest and regain their perspective on their work in EoL
care. This resonated with an understanding of the impact which moral distress can have
on health professionals. The formalised reflective practice and professional
supervision in this team were valued mechanisms for mitigating moral distress in the
clinical space. Most saw this practice as beneficial in dealing with moral distress in
their work. Many situations that contributed to moral distress had been discussed in
the reflective practice group. However, one participant disagreed with this practice and
actively avoided participation, instead using peer support to discuss issues of moral
distress. This probably reflected a personal preference for the way in which to seek
support.
Peer support was viewed highly in this team and evidence suggested support was
provided to more junior members of the MDT in this case. One participant described
the need to discuss a difficult encounter with a colleague late at night after her shift.
This support was highly valued and may be how participants dealt with current moral-
distress situations. Participants sought and received collegial support from within their
profession, but the evidence supported the continued existence of professional silos.
This case revealed many situations of moral distress, and adaptive strategies for
dealing with this distress. Although many of these strategies involved individual
approaches to managing distress, team support, team communication and a reflective-
practice approach highlighted how teams can provide support for members
experiencing moral distress. Thus, this team provided insightful data for this research
into the MDT experience of moral distress in providing EoL care.
Chapter 6: Discussion, Conclusions, and
Recommendations
6.1 INTRODUCTION
The aim of this research was to examine the experiences of moral distress in
multidisciplinary teams (MDTs) providing end-of-life (EoL) care to patients. The
individual experience of moral distress has previously been investigated; this research
explored moral distress in MDTs (Chapter 2). A multiple case-study design was used;
the theory of empathy and moral development provided a lens through which to view
the experiences of two MDTs (Chapter 3). This research confirms previous reports of
individual experiences of moral distress and further identifies new themes which
reflect multidisciplinary perspectives (Chapters 4 and 5). Chapter 6 interrogates these
findings, provides conclusions and recommendations and confirms the contributions
this research makes to answering the research question:

end-of-life care to patients?
This research included two distinct MDTs, (the cases) working in EoL care to
closely examine the impacts of this clinical setting on the experience of moral distress.
The two teams showed both literal and theoretical replication in the findings. This
supports the use of a multiple case study to achieve valid results. Yin (2018)
highlighted the benefit of two cases to support robust findings and provide evidence
for recommendations. Initial analysis of the findings confirmed themes in both teams
related to the experience of moral distress. Findings from the two teams revealed three
shared themes:
• Moral distress emerging from EoL decision making.
• The contribution of team communication to moral distress in EoL care.
• Reactions to the experience of moral distress and individual coping strategies.
The renal team identified a further theme relating to moral distress:
• Professional perspectives on providing EoL care.
The palliative care team also identified a further theme:
• Reflective practice and professional supervision addressing moral distress.
Both the renal and palliative care teams highlighted that, in the provision of EoL
care, decision making was critical and needed to be shared. The importance of shared
decision making aligned with findings in the focused review (Bruce et al., 2015;
Henrich et al., 2016; Thomas et al., 2016; Thorne et al., 2018). Uncertainty in decision
making contributed to moral distress for participants in both teams; decisions could be
delayed or changed depending on patient prognosis, and family and patient
participation in decision making. Quality of life, withdrawal of treatment, and patient
autonomy were identified as important in EoL decision making across both MDTs. In
palliative care, assisted dying requests led to moral distress in health professionals
because such requests could not be met.
The MDTs in this research highlighted the importance of communication and

identified enablers and barriers to communication. Intentional communication,
respect, negotiation, and support were critical to the effective functioning of the MDTs
and helped develop a professional environment which ameliorated moral distress. This
aligns with findings elsewhere (Bruce et al., 2015; Henrich et al., 2016; Pye, 2013).
Barriers to communication that contributed to experiences of moral distress included
exclusion, hierarchy, and the use of language and labelling. Several of these barriers
have been identified in the team literature (Bruce et al., 2015; Henrich et al., 2016;
Pye, 2013; Wall et al., 2016), although language and labelling as a factor contributing
to moral distress was not. This was a finding in both MDTs in this research.
The renal team highlighted that differing professional perspectives contributed

to moral distress. Three professional groups demonstrated very distinct views on
delivering care at EoL, and in communicating and decision making. Although these
perspectives did not appear as a separate theme in the palliative care team, they were
identified in areas of decision making and communication, as this discussion will
show. The palliative care team identified a further theme that highlighted the
contribution of reflective practice and professional supervision to manage moral
distress, and how this demonstrated a caring for self. Wall et al. (2015) found that
reflection was critical in managing moral distress; however, Thorne et al. (2018)
reported conflicting findings on the value of formal reflection to mitigate moral
distress.
Individual professional experiences of moral distress were identified in both

MDTs; the profound impacts these had on individuals were both personal and
professional. These impacts were confirmed in the literature (Bruce et al., 2015; Deady
& McCarthy, 2010; Elpern et al., 2005; Ferrell, 2006; Maluwa et al., 2012; Radzvin,
2011; Thorne et al., 2018). Individuals defined moral distress in relation to their
experiences and this facilitated development of coping strategies which included peer
support, rationalising, bracketing, speaking up, and taking a break. These are
evidenced in the literature (Dzeng et al., 2015; Elpern et al., 2005; Lawrence, 2011;
Maluwa et al., 2012; McClendon & Buckner, 2007; Thorne et al., 2018; Thurn &
Anneser, 2019).
6.2 CROSS-CASE ANALYSIS
To answer the research question, further cross analysis of the emergent team
themes was undertaken, specifically exploring the experience of moral distress in
MDTs providing EoL care to patients. Three unique constructs provide an
understanding of moral distress from a team perspective:
• professional experiences of moral distress and caring for self
• professional perspectives in delivering EoL care to patients
• professional approaches to enabling and negotiating EoL care.
This research confirmed that the experiences of moral distress in EoL care linked
with the theory of empathy and moral development. It also confirmed that different EoL
care perspectives exist within professional groups; these impact their experiences of moral
distress. Each professional group approached EoL care in ways which aligned with their
unique group identity. The constructs of professional experiences of moral distress,
professional perspectives in EoL care, and professional approaches in EoL care can be
explored using social identity theory (Tajfel & Turner, 1979; Tajfel, 1981) and its
extension of self-categorisation (Turner, Hogg, Oakes, Reicher, & Wetherell, 1987).
Social identity theory supports an understanding of the different perspectives and
approaches within professional teams that were revealed in this research. This research
did not initially explore the theory of social identity and self-categorisation to apply to
moral distress. However, the findings that professional groups within MDTs showed
distinct perspectives and approaches supported the use of this theory. A discussion of
social identity theory follows; the critical points are examined for their contribution to this
research.
6.3 HISTORY OF SOCIAL IDENTITY THEORY
Social identity theory originated in psychology and was developed by Tajfel and
Turner (1979). It provides an understanding of the relationships and behaviours of social
groups, and how membership supports professional roles and boundaries within groups.
It also identifies how groups can interact in a complex environment (Terry & Hogg, 1996;
Hogg & Terry, 2000). This theory is well developed and is applied across a variety of
organisations in which groups of people work together, including management (Ambrose,
Matthews & Rutherford, 2018), national security (Tarrant, Branscombe, Warner &
Weston, 2011), healthcare (Bochatay et al., 2019; Mitchell, Parker, Giles & White, 2010),
and team-based research (Glasford, Dovido & Prato, 2009; Grant & Hogg, 2012).
6.3.1 Definition
Social identity is defined as “that part of the individual’s self-concept which derives
from their knowledge of their membership of a social group (social groups), together with
the value and emotional significance of that membership” (Tajfel, 1981, p. 255). The
theory was further extended to include self-categorisation which explains how individuals
view themselves within groups and categorise their belonging to those groups (Turner,
1985; Turner et al., 1987; Turner, Hogg, Oakes, Reicher, & Wetherell, 1987). Social
identity theory considers what motivates membership of groups, and how uncertainty in
situations can contribute to a person seeking group membership (Hogg & Abrams, 1993;
Hogg, 2000; Tajfel & Turner, 1979). Key elements of this theory include
• membership of the group,
• self-categorisation, and
• uncertainty.
6.3.2 Membership of the Group
Social identity allows professionals to justify their behaviours, experiences,
attitudes, and their perception of situations within their own social group, and to develop
a sense of belonging. There is a cognitive awareness of membership of the group, and an
emotional awareness of belonging to the group, that confirm membership (Tajfel, 1982).
The group seeks to promote and protect its own sense of uniqueness and reduce
uncertainty, which enables self-enhancement and self-esteem of its members through their
association with the group (Abrams and Hogg, 2011; Hogg, 2000; Ye, Ollington & Salas
2016). Membership defines conformity of views, collective actions, and stereotyping of
behaviours, attitudes, and perceptions of the group, and influences how these are enacted
in the social environment of work (Hogg, Terry & White, 1995).
There is a depersonalisation process in which the individual identifies with, and will
protect and advocate for, the group perspective more closely than with their own views
(Hogg, 2000; Tajfel, 1982; Wyer, 2010). Differences within the group are minimised and
maximised between groups (Jackson et el., 1996). Groups do not always view other groups
negatively but tend to have higher respect and regard for their own (Tajfel, 1982). Groups
work to delineate domains of practice which support identification of their group and
differentiate it from others. Although individuals may belong to many social groups, each
of which can be important in different aspects of life, the context in which the group
operates can define behaviours and attitudes. In healthcare, occupation can assist in
defining the group and establish the boundaries that separate it from other groups (Currie,
Finn & Martin, 2010).
Group boundaries are constructed through group membership, supported through

education, professional networks, and regulatory discourse in the professional working
environment. There is evidence to support the importance of group boundaries which are
strongly defended (Abrams & Hogg, 1988; Hogg et al., 2007). These boundaries reduce
uncertainty when distinctively constructed and well defined (Hogg, Abrams & Brewer,
2017). Members will defend their group boundaries and the aspects which define their
group, including professional responsibilities and roles in employment, and often reject
changes to boundaries (Montgomery & Oliver, 2007). Group boundaries are important in
social identity theory as groups exist only in the context of other groups, each of which in
turn recognises the existence, boundaries, and membership of others.
6.3.3 Self-categorisation
Self-categorisation, an extension of social identity theory, explains how individuals
view themselves within the group to which they belong, and categorise their belonging to
that group (Turner, 1985; Turner et al., 1987; Turner, Hogg, Oakes, Reicher, & Wetherell,
1987; Wyer, 2010). Self-categorisation is a cognitive process: the individual chooses to
belong to a group, and has an awareness of their membership, and the value it provides
(Hogg et al., 1995; Turner et al., 1987). Hogg et al. (1995, p. 261) identified “prototypes”
– “subjective representations of the defining attributes of the group which dictate beliefs,
attitudes, and behaviours”. These prototypes are “fuzzy sets” of characteristics of the
group, or actual people who represent the group ideology (Hogg et al., 1995, p. 261).
Prototypes work to minimise differences within the group, but also to maximise
differences between their own and other groups that may be salient at the time (Hogg et
al., 1995). This self-categorisation and existence of prototypes contribute to the
depersonalisation of social identity, such that the individual takes on the group ideals over
their own individual perspectives (Wyer, 2010). Turner (1985) stated that the individual
became more an “exemplar” of the group than an individual. This enables group norms to
become important for the group. Norms can dictate acceptable behaviours and attitudes
within the group and influence the way the group functions in the presence of others.
Groups may compete with others for identity and challenge other groups in the course of
establishing their unique identity within their social environment (Hogg et al., 1995). Self-
categorisation assists the individual to develop a sense of belonging to the group which is
important in situations of uncertainty.
6.3.4 Uncertainty
Uncertainty exists in all areas of life, and people work actively to reduce uncertainty,
provide clarity and meaning to their existence, and gain control over their life (Hogg,
2000). The need to reduce uncertainty in social situations can lead to seeking support from
the social group (Grant & Hogg, 2012). Uncertainty leads to increased group membership
and cohesion as members seek support and self-categorise into the group (Abrams &
Hogg, 2001; Grant & Hogg, 2012; Hogg, 2000). In social situations, uncertainty can be
better managed when group members support and agree with each other; this is a defining
aspect of the value of group membership (Abrams, Wetherell, Cochrane, Hogg & Turner,
1990; Hogg, 2000). The prototypes in the group provide a sense of security for members
in times of uncertainty as they adopt the attitudes, perceptions, and behaviours of these
prototypes (Hogg et al., 2017).
6.3.5 Strengths and Limitations of Social Identity Theory and

Self-categorisation
This theory and its extension explain the formation of social groups and their
interaction with others. Membership rests on the premise that the group is clearly defined
and identifiable; it has defined boundaries, and there are perceived benefits to belonging,
because this provides support in uncertainty and promotes positive self-esteem and self-
enhancement (Tajfel, 1982). Group members can self-categorise and support the group’s
ideologies, beliefs, behaviours, and attitudes. Individuals adopt the characteristics of
prototypes within the group, which strengthens within-group conformity.
Social identity theory has been widely critiqued but, as Hornsey (2008, p. 217)
states, it is a metatheory that relies on “simple, elegant, testable, and useable principles”.
The theory has relevance for understanding groups and group behaviour and is well
supported by empirical research over several decades (Hornsey, 2008; Hogg et al., 1995;
Hogg, 2000; Hogg et al., 2017; Tajfel & Turner, 1979; Turner et al., 1987). A limitation
of this theory is that more than one group is required to explore the context and
perspectives among groups. This theory has been adopted in this research for its
applicability in understanding the dynamics of group interactions within MDTs, and with
members of other clearly defined groups.
6.3.6 Summary
A social constructivism approach asserts that meanings are negotiated through
processes in a social world and through interactions with others (Crotty, 1988). Social
identity theory and self-categorisation support this paradigm, social identity is a social
construction in which beliefs, attitudes and behaviours are negotiated and modified
within social groups. The social group retains and supports its membership through
modification and realignment of views that are negotiated within its social
environment. The interpretative approach to this research sought to explore and
identify the experience of moral distress in teams which have interrelated professional
social contexts. The use of social identity theory and self-categorisation supports a
unique approach to the discussion of (1) professional experiences of moral distress and
caring for self, (2) professional perspectives in delivering EoL care to patients, and (3)
professional approaches to enabling and negotiating EoL care.
6.4 PROFESSIONAL EXERIENCES OF MORAL DISTRESS AND
CARING FOR SELF
6.4.1 Introduction
The professional experiences of moral distress highlighted the significance of
the experience in health professionals when providing EoL care. These experiences
were intricately constructed in the setting of the MDT. Although the experience of
moral distress remains with the individual, it became evident in this research that the
MDT collectively influenced how moral distress was experienced by professionals
when providing EoL care. The experiences of moral distress in EoL care are well
reported in the literature (Bader & Herschkopf, 2018; Brazil et al., 2010; Bruce et al.,
2015; Epstein, 2008; Epstein, 2010; Flannery et al., 2016; Fridh, 2014; Henrich et al.,
2016; Pye, 2013). However, the extensive previous empirical research on moral distress
focused on a specific professional group (Asgari et al., 2017; Astbury & Gallagher, 2017;
De Villers & DeVon, 2012; Dzeng et al., 2015; Ferrell, 2006; Gallagher et al., 2014;
Johnson et al., 2016; Mitton et al., 2010; Silen et al., 2011). There was limited research on
moral distress in multidisciplinary teams (Bruce et al., 2015; Henrich et al., 2016; Pye,
2013; Thomas et al., 2016; Thorne et al., 2018; Wall et al., 2015). Social identity theory
is used to examine the ways in which the different professional groups defined, and
experienced moral distress and enacted caring for self when experiencing moral
distress.
The theory of empathy and moral development (Hoffman, 2000) was used to
examine moral distress and understand the development of prosocial behaviours that
influence the way in which a person acts in certain situations. Learning ways to care
for self were critical for the management of moral distress and enabled professionals
to continue to contribute to their profession, and the functioning of MDTs. Social
identity theory provided insight into this caring for oneself and the reasons that groups
sought support within their own profession (Tajfel & Turner, 1979).

Both MDTs involved in this research found “moral distress” an unfamiliar
construct. Health professionals struggled to clearly articulate a definition but did
provide a clear understanding of the phenomenon through their descriptions of their
experiences and emotions. The term moral distress was not widely used by participants
across these settings; throughout this research the definition provided was referred to
at times to clearly articulate its meaning.
The understanding of moral distress differed across the three professional

groups. For example, nursing professionals described it in terms of the patient, and
used this to frame their thinking about moral distress, while medical professionals
articulated moral and ethical behaviour in their definitions. Allied-health professionals
described the tension between supporting patient autonomy and rights and their
responsibility in providing EoL care. The different professional perspectives provided
insights into the attitudinal differences within the MDT and how professional roles and
responsibilities shaped the understanding of moral distress. Here, social identity theory
is used to understand how professional groups are influenced by their perspectives,
motives, and professional roles, any or all of which could potentially impact their
definitions of moral distress (Tajfel, 1981). Group membership supports a conformity
of views, and in defining moral distress, the professional groups articulated their
definition but the distinction between the groups were evident. Each professional
group develops its own meaning of moral distress, which is shared within the social
group (Hogg & Rinella, 2018; Wyer, 2010). Despite the lack of clarity in the definition
of moral distress for these professionals, the experiences of individuals were explicitly
stated and showed an understanding of how this phenomenon impacted on them
professionally and personally. Moral distress remains an individual experience but is
intricately constructed within the complex social environment of employment and
providing EoL care. These environments are described in this research.
6.4.3 Professional Experiences of Moral Distress

Experiences of moral distress articulated in this research highlighted the impacts
this phenomenon has on professionals. Experiences were vividly described; many had
occurred years before, which aligns with the long-term effects of moral residue
(Epstein & Hamric, 2009). Previous experience contributed to each professional’s way
of thinking and acting in subsequent situations, and to the development of moral
courage. Moral courage is defined as the ability and willingness to stand up for ethical
principles despite the risk to oneself (Cleary & Duke, 2019; Murray, 2010). Although
the concept of moral courage is not new (Edmonson, 2010; Numminen, Repo & Leini-
Kilpi, 2017), it was highlighted in this research with a strong connection to past
experiences of professionals in MDTs. Professionals in both MDTs studied felt
empowered and courageous to speak up and seek support in similar situations after
previous experience of moral distress. The professional’s social identity was supported
in these situations by their colleagues; this was evidenced in both teams. For example,
professionals described how they sought support exclusively from their own
professional groups in nursing, medicine, or allied health. Social identify theory
(Tajfel, 1981) provides an explanation that in times of uncertainty as in moral distress
situations, this group support will be sought within one’s own profession. Membership
to the group becomes important to professionals and social identity theory supports
this membership (Tajfel, 1981).
Chapter 2 identified a consistent approach to exploring moral distress felt by the

individual professional, and reported how different professions experience it (Austin,
2012; Borhani et al., 2015; De Villers & De Von, 2012; Deady & McCarthy, 2010;
Dzeng et al., 2015; Fourie, 2015). However, there is little analysis in the literature of
how each professional group shares similar or different experiences. Even when
several professions have been included in the research, instances of moral distress have
been described without always comparing the different professional group experiences
(Henrich et al., 2016; Pye, 2013). Bruce et al. (2015) provided limited discussion on
the different experiences of the professional groups but did not attempt to explain why
these occurred. This research explored the utility of social identity theory (Tajfel &
Turner, 1979) in providing some explanation for the different experiences and support
why coping with these experiences was sought only in the same professional group.
6.4.4 Moral Distress and Empathy

The theory of empathy and moral development (Hoffman, 2000) was used to
understand how health professionals developed their morals standards and prosocial
behaviour, and how this contributed to their actions and reactions in situations of moral
distress when providing EoL care. The professionals in this research consistently
demonstrated prosocial behaviour when providing EoL care for patients. All
professional groups stated they cared about quality of life, suffering of patients, and
the burden of disease. The study did not set out to make links to empathy, but saw
empathy displayed in descriptions of moral distress situations. These were described
in the researcher’s reflections at the conclusion of each of the finding’s chapters, which
included the interviewer’s experience and observations during the interview process.
What became evident was that multidisciplinary health professionals did show
empathy when providing care, and that it was influential in decision making,
considering quality of life, and communicating with patients and families, and that
empathy underpinned the provision of EoL care. Stories provided throughout this
research gave an insight into the deep understanding, caring and empathy that
prevailed in the professional groups in both MDTs, which aligns with the theory of
empathy and moral development.
“It is putting yourself in another person’s shoes” (Team 1, P1).
Professionals saw their responsibility in being able to put themselves in the shoes
of the patient and experience the patient’s perspective. This can be recognised as the
highly developed level of cognitive response known as “role taking” (Hoffman, 2000,
p. 54). The professionals would imagine themselves in the position of the patient and
would empathise with how they would feel (self-focused role taking) and empathise
with how the patient would feel (other-focused role taking). Hoffman (2000) argues
that self-focused role taking can result in more intense distress; this was evidenced
when professionals imagined themselves in the place of the patient, empathised with
the patient, and showed appropriate emotional responses.
In this research a relationship existed between professionals and patients which

contributed to the response of empathy for the patient in both MDTs. Empathic arousal
was evident when professionals could relate personally to the patient and their
situation, and when professionals saw something of themselves in the patient, such as
the way they dressed or lived their lives. When professionals imagined they were the
patient, the empathic arousal was greater than if they only considered the patient’s
physical expressions. This relates to what Hoffman (2000, p. 80) describes as “broader
empathic distress” and can lead to intense feelings as it activates the professional’s
own personal moral beliefs. Empathic arousal and distress were evidenced through the
stories in both MDTs and the emotional responses were witnessed. “You walk their
journey with them. Honestly and openly walk their journey with them. Listen to them
cry”. (Team 2, P3)
Empathic arousal was activated in professionals not only through role taking but
also the visual and auditory responses of being in the presence of patients. Hoffman
(2000, p. 209) identified a “here and now bias” for empathic responses and this was
identified in health professionals who were in close contact with patients and family.
These people were in the immediate environment of health professionals and so the
“here and now” bias was seen in these situations. Witnessing patient suffering further
engages the professional through empathic arousal. These responses have been learned
through conditioning, association or mimicry, and are a part of the professional’s own
moral development (Chapter 3). This empathic arousal was evidenced throughout the
findings.
Responsibility guilt was highlighted by Hoffman (2000) as occurring when

individuals feel they have caused harm to another person, even if they were not the
direct cause of this harm. This was evidenced when professionals felt they were
responsible for a patient suffering, wanted to advocate for the patient, and experienced
moral distress in situations when they believed the patient did not get the right
treatment. Although decisions for treatment may have been made by others, nurses felt
responsibility because their professional role dictated that they carry out treatments
they did not always agree with. Development of guilt responses is closely linked to the
individual’s own moral development and is internalised in early childhood
development (Thompson & Hoffman, 1980). Empathy has been linked with increased
guilt responses and this may account for the guilt experienced by health professionals
who have a caring role in their profession (Thompson & Hoffman, 1980).
Empathic over-arousal occurs when empathic distress rises to a level which leads
to avoidance behaviour and may account for professionals needing to take a break from
the workforce. This research suggested empathic over-arousal was encountered in
caring for patients at EoL across both MDTs in situations of moral distress. Avoidance
of work, feeling trapped, wanting to change jobs, and taking a break, were responses
to the ongoing effects of moral distress. Trevizan et al. (2014) suggests empathy can
decline over a prolonged time in employment, but this was not evidenced in this
research which included an experienced group of professionals.
Prosocial behaviours develop in individuals through socialisation processes

throughout life (Hoffman, 2000). These behaviours were evidenced throughout the
findings in both MDTs and supported the professionals’ need to be a patient advocate,
to speak up for the patient, to allow family more time in decision making, and to want
the best outcomes for patients. These behaviours were also identified in providing peer
support and understanding towards colleagues who were experiencing moral distress
across both MDTs.
This research identified that the experience of moral distress is closely linked to
prosocial behaviours and the caring responses of health professionals that are a part of
their individual internalised morals. What a health professional defines as right or
wrong in the context of the care they give is based on these moral values and their
experience in both life and their employment. Social identity theory (Tajfel, 1981) may
also contribute to understanding the experience of empathy. As social beings,
professionals integrate and identify with many professional and personal social groups.
These groups contribute to the group identity and ways of thinking and acting, which
includes prosocial behaviour. All professional groups in the MDTs in this research
identified empathic responses in their attitudes towards patients and families at EoL.
6.4.5 Caring for Self in Moral Distress

Each professional group in this research highlighted the use of strategies that
were individual ways of caring for self and coping with moral distress; they include
rationalising behaviours, compartmentalising, taking a break, and using peer support.
These strategies echo similar findings in the empirical literature (Bruce et al., 2015;
McAndrew & Leske, 2015; Thorne et al., 2018). What was identified in this research
was that the different professional groups chose to use different methods of self-care
in moral distress situations. Previous research has been limited in highlighting that
professional groups prefer different methods (Bruce et al., 2015). The use of
professional supervision was preferred by two of the professional groups in this
research; the remaining group of professionals preferred to use reflective practice. This
can be viewed through the lens of social identity as different groups will chose and
utilise methods of support that are favoured within their social group. Their group will
encourage and facilitate the use of the same methods of support for colleagues.
6.4.5.1 Peer Support

Seeking peer support from within one’s own professional group was a consistent
finding across professionals in this research and was used regularly in situations of
moral distress. Family support was not cited as useful unless the family member had a
professional background with similar experiences. Support from professional peers
within the social group, and self-categorisation of professionals, played important
roles in situations of uncertainty, including moral distress. When one feels uncertainty
around their values or attitudes, it produces a state which is uncomfortable. Individuals
will seek to rectify this by seeking self-categorisation with a group that will support
uncertainty and give meaning to actions (Grant & Hogg, 2012). Findings in this
research suggested that in times of uncertainty, including moral distress situations,
professionals sought advice, support and to find rationales for actions from their own
professional group. This was evidenced across both teams and within all the
professional groups included in this research. It was evidenced that these were peers
who would understand the situation and provide support.
Types of moral distress situations in which peer support was sought differed
between professional groups, which reflected differences in their professional roles.
Medical professionals focused on difficult medical decisions that contributed to moral
distress; they referred to their professional group for support and understanding in
decision making. Nursing professionals sought support in situations that related to
patient treatment and patient suffering; allied-health professionals looked for support
around situations that related to the autonomy of patients across both MDTs. Social
identity theory (Tajfel, 1981) provides the understanding here that professionals look
to their own social group in times of uncertainty (Grant & Hogg, 2012).
6.4.5.2 Professional Supervision

Professional supervision was considered beneficial in coping with moral distress
in the palliative care environment when providing EoL care. It is a professional
expectation within the medical profession that its members are encouraged and
supported to interrogate practice, reflect on practice, and identify support needs.
Supervision involved seeking private counselling or mentoring away from the
workplace and can be considered “formative, normative, and restorative” (Austin,
2016, p. 70). This research found that supervision included counselling, self-reflection
on moral distress, and identifying emotional needs associated with this distress. The
importance of a mentor in this relationship was highlighted, as was the need for this
person to be someone with whom a comfortable relationship could exist. Neither of
these practices was exposed in the renal team as a formal process, but the palliative
care team did discuss being mentored as a way of addressing moral distress.
This research also showed that different support mechanisms were used by
different professional groups for coping with moral distress. Medical professionals and
allied-health practitioners sought professional supervision as a means of support when
they encountered moral distress in EoL care; nursing professionals did not mention
professional supervision. Social identity theory provides an explanation here that
acceptable practices within a group can be supported by the group and become the
norm for the group (Tajfel, 1981). This is evidenced in allied health, which has
strongly supported supervision within its profession over the past one hundred years
(Chiller & Crisp, 2012; Martin, Myers & Brickman, 2019; Saxby, Wilson &
Newcombe, 2015). Allied-health professionals have also utilised this process to
support workforce retention (Chiller & Crisp, 2012). Medicine has adopted the
practice, although it appears to be more limited in uptake (Austin, 2016; Barham et al.,
2019). Moral distress associated with the confidential nature of medical professionals’
responsibilities may have been better supported through professional supervision than
by reflective practice. Nursing has included reflective practice in curriculum and
clinical settings for moral distress; this practice has been widely accepted by this
professional group (Caldwell & Grobbel, 2013; Gustafsson & Fagerberg, 2003; Rees,
2012).
6.4.5.3 Reflective Practice

Reflective practice has been defined as “the ability to examine one’s actions and
experiences with the outcome of developing their practice and enhancing clinical
knowledge” (Caldwell & Grobbel, 2013, p. 319). Reflection has been shown to support
both learning and teaching in nursing and assisting in dealing with emotional
challenges (Deady & McCarthy, 2010; Gustafsson & Fagerberg, 2003; Lievrouw et
al., 2016; Rees, 2012), and to promote work engagement (Lawrence, 2011). This
research recognised that sharing experiences provided support within groups and
engendered a sense of belonging and cohesion between members having to deal with
challenging situations in providing EoL care. Belonging is an important part of social
identity within groups and supports the group membership. Formal reflection enabled
the making of sense from experiences encountered and allowed professionals to stop
and share their own experiences with others. The palliative care team evidenced the
use of an organised reflective practice group that allowed team members, specifically
nursing and allied-health professionals, to fully explore difficult situations and
articulate their experiences of moral distress. Reflective practice supported intentional
communication and a safe space that enabled professionals to speak up and share
stories and contributed to a supportive environment. Although informal reflection
occurred between colleagues, the use of a formal facilitated process supported more
structured reflection and was recognised as a beneficial practice providing space and
time to consider the challenges in providing EoL care. Thorne et al. (2018) reported
similar benefits of reflection for moral distress but did not distinguish which
professionals used this approach. This research found differences between
professional groups in the practices they used to support the social identity of the
groups. Significantly, in the palliative care team, both reflective practice and personal
supervision were used consistently, and were valued by the three professional groups
in this study as contributing to caring for self when experiencing moral distress.
6.4.6 Summary
The experiences of moral distress in health professionals highlighted in this
study confirmed the existence of this phenomenon. Empathic responses were
evidenced throughout this study; the theory of empathy and moral development was
used to understand these responses. Social identity theory was also used to examine
the ways in which the different professional groups defined, experienced and enacted
caring for self when experiencing moral distress. The professional experiences of
moral distress highlighted the significance of this phenomenon in the health
professionals in their everyday clinical work. These experiences were intricately
constructed in the setting of the MDT.
6.5 PROFESSIONAL PERSPECTIVES IN DELIVERING END-OF-LIFE

CARE TO PATIENTS
6.5.1 Introduction
The MDTs in this research comprised three professional groups: medical,
nursing, and allied health. This research confirmed that each professional group in the
MDTs had their own distinct perspectives in delivering EoL care. Situations of tension
between professional groups became evident when these different perspectives emerged.
Professional perspectives confirmed boundaries, attitudes, beliefs, and values of these
professional groups; these attributes influenced how groups in the MDT interacted in the
EoL care context. Importantly, the perspectives and interactions of these professional
groups contributed to situations in which moral distress could arise in the delivery of
EoL care. This research identified the utility of social identity theory (Tajfel & Turner,
1979) in understanding the influence of professional group perspectives in moral distress
encounters when delivering EoL care.
6.5.2 Differing Perspectives of Delivering EoL Care
This research highlighted that each professional group did not always seek the
perspectives of other groups, or explain their own perspectives, so disagreements on care
decisions in EoL emerged. These different perspectives led to situations in which moral
distress arose within individuals in the MDT. For example, the diagnostic, prognostic,
legal and cost perspectives influenced the care decisions of medical professionals,
although these influences were not always recognised by other professionals in the MDT.
Nursing professionals focused their perspective on the patient relationship and their
closeness to patients in EoL care; allied-health professionals viewed EoL care through a
psychosocial lens. These perspectives influenced care decisions, the interactions with
families, and the ways in which family dynamics and conflicts were addressed. These
differences contributed to the experiences of moral distress in members of these MDTs.
6.5.2.1 Care Decisions

Care decisions made by medical professionals are carefully evaluated in terms of
patient diagnosis, patient prognosis and the legality of circumstances, which means care
decisions could be delayed. There is support in the empirical literature that delayed care
decisions contribute to moral distress (Mobley et al., 2007; Oberle & Hughes, 2001;
Pavlish et al., 2014; Robichaux & Clark, 2006; Zuzelo, 2007). However, these researchers
did not attempt to examine delayed care decisions from the perspectives of the different
professional groups. Bruce et al. (2015) stated medical professionals focus on the science
of medicine when making care decisions, while nurses took a more holistic view.
Snelgrove and Hughes (2000) described medical professionals as dealing with the “sharp
end” of care decisions in carrying out their responsibilities. This may account for medical
professionals considering the diagnostic and prognostic perspective foremost when
making care decisions regarding EoL treatment. Others have identified that the medical
narrative focuses on disease while nursing focuses on patient care (Robichaux & Clark,
2006). Wright and Brajtman (2011) argue that the nursing perspective is towards human
relationships, including respect and compassion; Snelgrove and Hughes (2000) said that
nurses’ detailed knowledge of the patient is important for their inclusion in patient care
decisions. This agrees with the findings of this research that nurses focus on patient
perspectives and identified their closeness to the patient. These different perspectives
contributed to the experiences of moral distress through a range of EoL decision-making
issues.
Different perspectives applied when treatments for EoL patients included care
decisions to provide aggressive treatments. When decisions were made to choose a
treatment modality without inclusion of all the professional groups in the MDTs, tensions
arose over the lack of shared decision making. The different perspectives included
financial implications, a patient-focused approach, and a psychosocial approach which
included patient autonomy. Each professional group did not always share their
perspectives, and this contributed to moral distress for members who did not agree with
the care and treatment decisions. Several studies have highlighted how this lack of
inclusion and consultation in care decisions can contribute to moral distress (Flannery et
al., 2015; Henrich et al., 2016; Mehlis et al., 2018; McMillen, 2007; Pye, 2013; Wall et
al., 2015). In this research, allied-health professionals highlighted their perspectives on
patient autonomy and patient rights, and experienced moral distress when patient
autonomy was denied in care decisions at EoL. The empirical literature suggests that there
is a potential for moral distress to arise when patient autonomy is denied (Deady &
McCarthy, 2010; Gjerberg et al., 2010; Henrich et al., 2016; Pavlish et al., 2011). This
research identified that each professional group recognised they could provide a different
perspective and view on patient needs that may influence EoL care decisions. The lack of
exploration of the perspectives and knowledge of members of other groups led to
situations which may contribute to moral distress.
Current literature exploring moral distress in teams does not address the utility of
considering the social identity of professions as a factor potentially contributing to moral
distress (Bruce et al., 2015; Henrich et al., 2016; Thorne et al., 2018). This research was
able to identify group perspectives that supported group social identity and influenced
group thinking. Social identity theory suggests that different professional groups think
differently (Tajfel & Turner, 1979). Montgomery and Oliver (2007) proposed that social
identity theory explains why professionals with shared identities and knowledge come
together and share similar motivations in making decisions. Individuals become part of a
professional group that defines its own social identity and group boundaries that in turn
dictate thinking, behaviour, and attitudes of its members (Hogg et al., 2017; Wyer, 2010).
The social identity of groups creates distinct boundaries of practice for professional
groups; one of these boundaries for medical professionals is being the decision makers.
Terry, Hogg and McKimmie (2000) argue that when a group norm is congruent in the
group, such as being decision makers, this strongly influences behaviour within the group.
The distinctiveness of medicine, nursing, and allied health as professions is evidenced in
this research; the way these groups viewed care decisions from their own group identity
contributed to moral distress.
6.5.2.2 Family Participation in Care Decisions

Moral distress was identified within MDTs when the family’s views did not align
with what professionals recognised as appropriate care decisions. This research found
difficult situations arose involving family participation in care decisions that contributed
to delayed decisions, difficult decisions, allowing families more time to make decision,
and evolving care decisions. The empirical literature identifies many studies in which EoL
care decisions involving families contribute to moral distress of health professionals
(Badger, 2005; Ferrell, 2006; Gjerberg et al., 2010; Mobley et al., 2007; Oberle & Hughes,
2001; Whitehead et al., 2015; Zuzelo, 2007). What this research adds is that the different
health professional groups viewed family participation in decision making from different
perspectives. This included care decisions being made in consultation with families, and
legal aspects and patient prognosis being considered, all of which led to a degree of caution
on the part of the medical professionals in making care decisions. Nursing professionals
focused on their closeness to the patient, the patient suffering they witnessed, and often
providing support to the patient over the family. While the suffering of EoL patients is
recognised in other studies (Bruce et al., 2015; Gjerberg et al., 2010; Henrich et al., 2016;
Rice et al., 2008; Thorne et al., 2018), it provides meaning in the team context as
professional groups viewed the circumstances of the patient and family from different
perspectives. Administering treatments professionals did not agree with, and comments
that the patient was “tortured” by treatments, contributed to moral distress. The allied-
health professionals considered a psychosocial approach ought to include families in care
decisions, for families to be valued in the process, together with supporting patient
autonomy, and a holistic view. Recognition of these different perspectives contributes to
the findings of this research. Social identity theory supported the conformity of views and
perspectives which can exist within a group (Tajfel & Turner, 1979). The group influence
on perspectives supports group membership and adds value to being part of a group.
6.5.2.3 Family Relationships in Care Decisions

Family conflict and difficulties in family relationships occur when different family
members want different treatments in EoL care. The moral distress literature reports that
conflict situations with families can contribute to moral distress for health practitioners
(Badger, 2005; Ferrell, 2006; Gjerberg et al., 2010; Henrich et al., 2016; Mobley et al.,
2007; Whitehead et al., 2015). Because each professional group valued their professional
roles in these situations, this contributed to moral distress for members of other groups.
Medical professionals considered decision making a priority, and the need to act with
caution in ways that were legally supported, considering the needs of patients and families.
Giving families too much responsibility in care decisions has been cited as contributing to
moral distress for health professionals (Gjerberg et al., 2010; Henrich et al., 2016; Pye,
2013). Nursing perspectives here included a focus on caring, closeness to the patient and
a sense of “ownership” of the patient that highlighted a unique relationship with the patient
and afforded an insight into the group’s social identity. Finally, when conflict occurred,
allied-health professionals sought to present a holistic view and address family
relationships.
Social identity theory recognises the development and maintenance of distinct

boundaries between groups (Tajfel & Turner, 1979). These boundaries serve to distinguish
group behaviours and unique knowledge, and to provide a protective role for the group
(Hogg et al., 2017; Montgomery & Oliver, 2007). Boundaries, which may have been
historically developed, provide support for the group and assist in marking its
distinctiveness from other groups (Montgomery & Oliver, 2007). It was evidenced that
health professionals aimed to protect their group boundaries by providing input into
overall patient care decisions in line with social identity theory (Tajfel & Turner, 1979),
they promoted their positive distinctiveness and their knowledge of the patients and their
families. When this knowledge was not shared, the tension between the different
perspectives contributed to moral distress.
6.5.3 Summary
This research examined MDTs and it emerged that within these teams each
professional group was influenced by a unique social identity that was distinct, and
this identity contributed to different perspectives in providing EoL care. The
differences in perspective led the professionals in these MDTs to experience moral
distress. Social identity theory (Tajfel & Turner, 1979) is a useful tool to understand
the complex ways that professional groups form their perspectives and gain
knowledge, and act in accordance with these. Each professional group claims a
professional boundary of practice that supports their perspectives and practices in the
clinical environment. Some members of the MDT experienced moral distress when these
boundaries of practice were impacted by the care decisions or practices of other
professional groups within the team. Although complete alignment of different
professional perspectives may not be realistically achievable there needs to be a
recognition and acceptance of the different perspectives if the professional members of the
MDT are to work together effectively and ameliorate the effects of moral distress, which
inevitably occurs when delivering EoL care.
6.6 PROFESSIONAL APPROACHES TO ENABLING AND

NEGOTIATING END-OF-LIFE CARE
6.6.1 Introduction
Professional approaches to enabling and negotiating EoL care are critical to the
functioning of MDTs. These are attained through intentional communications that are
respectful, foster recognition of professional views, and encourage open dialogue.
Intentional communication and negotiation between members of MDTs facilitates
sharing of professionals’ perspectives with others on the team. This communication
alleviates moral distress by helping members understand other group perspectives.
This research found that barriers to the development of effective communication
between groups – professional exclusion and hierarchy, and the use of language and
labelling – contributed to moral distress experienced within the MDTs.
6.6.2 Shared Decision Making

Shared decision making has been shown to be important within teams to prevent or
reduce moral distress (Bruce et al., 2015; Henrich et al., 2016; Pye, 2016; Thomas et al.,
2016; Thorne et al., 2018). Shared decision making occurred in this research when groups
participated in intentional communications that allowed the groups within the MDTs to
present their perspectives on the EoL care to be provided. This sharing supports the
professional recognition of groups as they felt respected when they could provide their
professional views. Respect sustains the social identity of professionals who consider
themselves able to contribute to the MDT and decisions concerning the care of EoL
patients. When respect and support in stressful situations was not provided, moral
distress arose. Other studies (Thorne et al., 2018; Wall, Austin & Garros, 2016)
confirm the finding that lack of respect and support contributes to moral distress.
Self-categorisation, where members see themselves as part of a group and adopt
the positive images of that group, contributes to professional self-esteem (Hogg et al.,
1995). The group offers respect for its members and satisfies both self-esteem and self-
enhancement needs (Hogg et al., 2017). Although groups do not always hold negative
views of other groups, they do hold higher views of their own group and their own
group perspectives (Tajfel, 1982). This was evidenced in both teams in the way they
spoke about their own professional group and the relationships within these groups.
6.6.3 Negotiation
The empirical literature highlights lack of negotiation between teams as
contributing to moral distress (Bruce et al., 2015; Henrich et al., 2016; Wall et al.,
2015). Each professional group in this research identified their role in negotiating care;
these roles were supported by their membership of their respective professional group.
Negotiation within the MDTs in terms of vocabulary and problem-solving contributed
to a broader understanding of each of the professional groups. In this research,
negotiation within both teams showed the importance of how information is presented
in order to gain acceptance. It also showed the importance of recognising that different
professional groups view situations from their own perspectives and will attempt to
negotiate from these perspectives, in part to reduce moral distress. Further, this
research found that when negotiation was fragmented, and when it did not occur in
EoL care decisions, professional groups felt a powerlessness that has the potential to
contribute to moral distress (Choe et al., 2015; Elpern et al., 2005; Pye, 2013; Radzvin,
2011).
Social identity theory provides an understanding of negotiation within the MDT:

different professional groups view their negotiations from different perspectives
(Tajfel, 1982). The theory suggests that groups identify with certain behaviours and
practices that have developed historically within groups, and through association with
other professional groups (Tajfel & Turner, 1979). Membership of the group
influences the way in which the professional sees their role in negotiation (Hogg et al.,
1995). This research found there were unique roles played out in negotiation within
the teams. Snelgrove and Hughes (2000) noted that nurses recognise their unique
position of knowing the patient as a person, and that this puts them in a position of
strength in negotiations. This research found that, at times, professional groups
challenged other groups to negotiate outcomes in decision making. There is further
evidence of this in the literature (Snelgrove & Hughes, 2000; Suddaby & Viale, 2011).
Suddaby and Viale (2011) state that professionals use their expertise to challenge the
structures within organisations and create new areas of professional practice. Malloy
et al. (2009) noted nursing professionals’ skill in manoeuvring information, so it is
acceptable to other professionals. Others have recognised the need for a diplomatic
approach in negotiation within the MDT to prevent relationships being compromised
and avoid risk of moral distress (Deady & McCarthy, 2010). In this research, these
challenges were considered important for negotiation between professional groups so
that professionals felt confident to voice their views on EoL care, and to avoid moral
distress.
6.6.4 Exclusion
Exclusion in communication between professional groups created barriers
between groups in the MDTs studied in this research. It contributed to inappropriate
care and devalued the excluded professionals, making them feel their contribution to EoL
care was not respected. Exclusion in communication was also associated with
perceived powerlessness to change situations and contributed to moral distress.
Exclusion in communication has been identified in the empirical literature as
contributing to moral distress, but the ways in which such exclusion can affect the
social identity of the professional experiencing moral distress has not previously been
reported (Flannery et al., 2015; Hamric & Blackall, 2007; McAndrew & Leske, 2014;
Mehlis et al., 2018; McMillen, 2007; Pye, 2013; Reed & Rishel, 2015). Exclusion in
communication does not support the social identity of a group whose members view
themselves as professionals with a contribution to make to patient care and shared
decisions (Hogg et al., 1995). In this research, professionals valued their role in
providing information on the patient; this was not possible when they were excluded
from group and family meetings. There was no evidence of exclusion in
communication within the individual professional groups of medicine, nursing, and
allied health, but there was exclusion between these groups. Being excluded from
communication was further interpreted in this research as a lack of respect between
professional groups. When communication was not inclusive there were
misunderstandings about treatment options; this led to situations described as
frustrating, demoralising, and contributing to moral distress.
6.6.5 Hierarchy
The professional hierarchy within the MDTs in this study exerted influence over
approaches to EoL care and was a barrier to communication between the professional
groups. When decisions made within the hierarchy of groups did not align with what other
groups in the MDT believed to be right, there was frustration, anger, exclusion,
powerlessness, and moral distress. Oberle and Hughes (2001) related the hierarchical
structures in healthcare to communication issues – not being listened to, being expected to
remain silent, and not being respected for their professional judgement – that contributed
to moral distress. Other studies have verified that hierarchy contributes to similar problems
(Cobanoglu & Algier, 2004; Corley et al., 2005; Malloy et al., 2009; Shorideh et al., 2012;
Zuzelo, 2007). Professional hierarchy is supported by processes of social identity. Social
identity theory posits that groups will favourably view their group over other groups and
support their own group’s identity to maintain existing boundaries and structures (Hogg
& Terry, 2000). Social identity theory argues that individuals will align their thinking and
attitudes to conform with those of the group to which they belong (Hogg, 2000; Tajfel,
1979; Wyer, 2010). When group alignment occurs, between-group differences become
more obvious (Jackson et al., 1996). This research found that the hierarchy between
professional groups was clearly established and continued to exert an influence in EoL
communication and care that inevitably contributed to moral distress.
6.6.6 Language and Labelling

Each professional group in this research used language unique to their group and
did not consider how this language may contribute to the moral distress of other groups
in the MDT. The literature on moral distress does not articulate the use of language as
contributing to moral distress, but this research clearly identified its role in MDTs.
Health professionals in this research identified the ways in which language and labels
are used in everyday speech, such as labelling patients or their families “aggressive”
or “difficult”; this was viewed as not aligning with a patient-centred approach and
impeding high-quality EoL care.
Social identity theory identifies the adoption of appropriate and respectful

language, behaviours, dress, and work practices within individual groups (Hogg et al.,
2007). The social group protects its uniqueness and highlights it difference from other
groups; language is one means of doing this (Jackson et al., 1996). After this aspect of
communication was identified in this research as contributing to moral distress for a
professional group, it was important to examine the use of language by other
professional groups in the MDTs. Some professional groups used language interpreted
as derogatory by other groups in the MDT. However, it appeared that those who used
this language intended it to be descriptive and not derogatory. To explain language use
by other professional groups, it is important to understand the development of
language, and how it is accepted by, these professional groups without question, or
awareness of its impact on others (Allen, Chapman, O’Connor & Francis, 2007).
Professions have traditionally been shaped by their professional group identities and
organisational cultures that have influenced their use of language. Social identity
theory provides insight here: to be accepted within, and to integrate with, the
professional group, the use of the same language is adopted without question (Hogg et
al., 2007).
6.6.7 Summary
To enable and negotiate EoL care, the professional groups in this study needed
to use intentional communication and negotiate with other groups, and to be respectful
and inclusive of the perspectives of other professional disciplines in the MDT. This
approach supported good team relationships and enabled team members to feel
respected and recognised, which also supported their social identity and assisted in
ameliorating moral distress. Exclusion in communication, the use of certain language
and labelling, and a strong hierarchy affected negotiations and in turn EoL care and
contributed to moral distress for professionals.
6.7 CONCLUSIONS OF THIS STUDY
Moral distress has been extensively identified as a significant experience for

health professionals across a broad range of health professions. A narrative literature
review confirmed the detrimental impacts of this phenomenon to health professionals,
organisations and patients (Chapter2). A focused literature review confirmed the gap
that existed in exploring moral distress in the context of MDTs and the ways in which
professionals within these teams influenced the experience of moral distress. Two EoL
care settings were chosen to explore the research question- What is the experience of
moral distress in multidisciplinary teams providing end of-life care? These two case
studies included a palliative care MDT and a renal MDT and were chosen to explore
moral distress. Social constructivism provided the philosophical paradigm and an
interpretive approach to this research sought to explore moral distress in MDTs which
have interrelated professional social contexts. Embedded case study design was used
including two case studies to explore the existence of the experience of moral distress
in MDTs and in the EoL setting.
This research has confirmed the experience of moral distress for participants in
decision making, communication within the MDTs, professional perspectives of
individual disciplines and, through reflective practice and professional supervision in
providing EoL care. Further cross case analysis of these MDT themes was completed
to specifically examine how the experience of moral distress emerged within these
MDTs when providing EoL care. This analysis revealed three unique constructs which
underpinned the understanding of moral distress from the MDT perspective:
1) Professional experiences of moral distress and caring for self, 2) Professional

perspectives in delivering EoL care to patients, and 3) Professional approaches to
enabling and negotiating EoL care to patients. Examination of these constructs
contributed to understanding the experience of moral distress in MDTs providing EoL
care and support the following study conclusions.
Firstly, this research confirms that moral distress is experienced by health

professionals delivering EoL care to patients in renal and palliative care settings.
Although moral distress is acknowledged as an individual experience, the MDT can
create situations and conditions which impact on health professionals and contribute
to the way in which professionals care for themselves. While not all participants
recognised and explicitly identified their moral distress experience, the findings show
that all participants demonstrated responses indicative of moral distress. The theory of
empathy and moral development was used to understand the empathic responses
articulated by participants in this research.
Secondly, the research highlighted the distinct differences between each of the
professional groups in the MDTs which contributed to different perspectives in
providing EoL care. Social identity theory (Tajfel & Turner, 1979) and self-
categorisation (Turner, Hogg, Oakes et al., 1987) have utility in understanding the
different professional perspectives within the MDTs that existed. Social identity theory
(Tajfel & Turner, 1979) provided a new lens to explore the intricate ways that
professional groups define their professional boundaries, which support their
perspectives in the clinical environments of EoL care. Moral distress was experienced
when these boundaries of practice were impacted by the care decisions or the practice
of other professional groups within the MDTs. These professional perspectives need
recognition and acceptance if the MDT is to work together effectively and ameliorate
the effects of moral distress on professionals. Examination of moral distress
experiences illustrated the intricacies of these experiences can be exacerbated and
alleviated by the different professional perspectives in delivering EoL to patients that
exist in MDTs.
Finally, professional approaches to enabling and negotiating EoL care within

MDTs contributed to the moral distress experience. Social identity theory (Tajfel &
Turner, 1979) provides an understanding that different professional groups will use
different approaches to communication and negotiation in the MDT. It helps explain
the development and membership of professional groups engaging with their own
group identity and establishing boundaries that uphold the views and perspectives of
their groups. Social identity theory also explains how professional groups value the
differences between groups and justify the maintenance of these differences (Tajfel &
Turner, 1979). Social groups were evident in MDTs and these groups developed their
own identity that was fostered by unique professional language, behaviours, beliefs
and attitudes. Exclusion from communication, the use of certain language and labelling
and a strong hierarchy impacted on EoL care and contributed to moral distress. To
enable and negotiate EoL care professional groups in the MDTs needed to engage in
intentional communication and negotiate with respect and inclusive professional
approaches. This was found to ameliorate the experience of moral distress.
Differences between these professional perspectives and approaches highlight

novel findings in this research and confirm the ways in which professionals
navigate and care for self in moral distress. It is these differences within the
complex social environment of MDTs examined in this research that potentiated
the experience of moral distress to either develop or exacerbate for these
professionals.
6.8 STRENGTHS AND LIMITATIONS
The limitations of this study were discussed in section 3.5.7 as a part of the
case description. These included a geographical limitation which may have
limited the findings to this location. Further research across other health services
may assist in
confirming the findings of this study or add further contributions. As highlighted
previously participant demographics also contributed to the unique findings of this
study and a different demographic may contribute further insight to the experiences of
moral distress. The examination of further cases in other health contexts may allow a
broader understanding of this phenomenon in health care teams.
The strengths of this study included the use of an embedded multiple case study
design which strengthened data analysis by analysing at an individual level, within
cases and between cases. The use of this design improves the reliability and
generalisability as multiple cases are used (Gray, 2009; Walshe, 2011). Yin (2018)
considered this design more robust, with an aim to replicate literal or theoretical
findings. This study was able to achieve this replication of findings across both cases.
The unique application of social identity theory to these findings supported the use of
this design for this research.
6.9 RECOMMENDATIONS
This research has confirmed the importance and relevance of collective

professional perspectives in the experience of moral distress.
Recommendations for ongoing research to address moral distress in MDT’s

include: 1) To further explore the utility of social identity theory to understand moral
distress in MDT’s providing EoL care; 2) To develop a quantitative tool to research
the frequency and intensity of moral distress in MDT’s; 3) To explore the effectiveness
of reflective practice and professional supervision in addressing moral distress within
MDT’s, and; 4) To identify the ways in which families can be supported in decision
making at EoL which would enable the transition from acute care to a comfort care
approach.
Understanding the social identity of professional groups in the current research

confirmed that social identity theory was useful for exploring the research question.
Interactions among groups inevitably include a dimension of social identity (Abrams
& Hogg, 2004; Hogg & Rinella, 2018; Kreindler, Dowd, Star & Gottschalk, 2012).
Further research commencing from this theoretical perspective would explore a
philosophical stance and further elaborate on assumptions and views of how moral
distress is grounded in professional perspectives. Social identity theory is instructive
in understanding the shared values and beliefs of health professionals, and for
potentially uniting these professionals to overcome communication and organisational
barriers in healthcare teams. Further research on moral distress that explores the link
to this metatheory may provide new insights for understanding and examining
interventions to address moral distress in MDTs.
The quantitative research in moral distress has consistently focused on the

individual experience of moral distress. Chapter 2 identified the wide use of survey
instruments employed to determine the frequency and intensity of moral distress in
individual health professionals and, frequently, in nursing. The literature on the team
experience of moral distress is limited and consisted of qualitative research only. Use
of a survey tool to focus on moral distress in teams may enable a larger data collection
than this qualitative study. Health care is increasingly focused on a multidisciplinary
or interdisciplinary team model of care; further research into team issues is justified.
The development of specialised teams in healthcare has proliferated in the past decade.
Research needs to encompass this change; further quantitative research into moral
distress in teams is needed. This would provide more data and enable further analysis
on moral distress within MDTs.
In this research both reflective practice and personal supervision were used and
were acceptable ways to address moral distress experiences. Reflective practice was
routinely used by the palliative care team where a formal group existed which provided
opportunity for reflection on clinical situations and moral distress. This practice was
valued by the clinical team and contributed to the process of caring for self.
Recommendations for practice include introducing these opportunities into clinical
areas and providing support for health professionals in this type of structured group.
As highlighted in the findings a reflective practice group which is coordinated by a
suitably qualified person encouraged participation and supported the outcomes. This
study suggests that without a formal process of reflective practice, it occurs on an
informal basis but cannot guarantee that all staff will access these informal
opportunities.
A further finding in this research identified the need to support families in

decision making at EoL and to provide understanding of the meaning of comfort care
in palliative EoL situations. Families often experienced needing more time in decision
making and the healthcare professionals noted that families could be conflicted as to
the right choices for their relatives at EoL. Physicians in this research and other studies
confirmed situations were morally distressing when family opinions differed from
what they believed could be done, when families became aggressive and had
unrealistic expectations of treatment and did not accept when it was time to take a
comfort care approach (Henrich et al., 2016; McAndrew & Leske, 2014). This
advocacy role in both settings was linked closely to the very nature of health
professionals who had direct patient contact, an understanding of what the patient
wanted and recognised the suffering of the patient. Further research could explore an
understanding of advocacy for families and the moral distress for MDT’s. Recognising
when families need support and identifying the best way to provide this support could
further be explored in future research.
The research suggested above could then inform collective strategies and
interventions to alleviate moral distress in MDTs specifically, and in other patient-care
settings, including EoL. For example, addressing the different perspectives of
constituent groups, and the enablers and barriers to effective communication within
teams. Understanding and addressing moral distress at a personal and professional
level within a team setting may also benefit healthcare professionals. This research
may have wider implications for both clinical practice and the education of health
professionals.
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Appendices
Appendix A CASP Tool
Citation: Bruce, C. R., Miller, S. M., & Zimmerman, J. L. (2015). A qualitative study exploring moral distress in the ICU team: The
importance of unit functionality and intrateam dynamics.
Is there a clear statement of aims? Yes. To determine the key sources of moral distress in critical care professionals.
Is a qualitative methodology appropriate? Yes. Qualitative case study. N=29. Nurses, physicians and ancillary staff.
Was the research design appropriate to address the Yes. It used case study methodology for three recent cases.
aims of the research?
Was the recruitment strategy appropriate to the Yes. The clinician had to have extensive involvement with the patient and family.
Was the data collected in a way that addressed the Yes. There was a clear description of data collection methods.
research issue?
Has the relationship between the researcher and No information.
participants been adequately considered?
Have ethical issues been taken into consideration? There was no mention of ethical approval but informed consent was obtained from
participants.
Was the data analysis rigorous? Yes. A codebook was developed for themes and discussed with the research team.
Is there a clear statement of findings? Yes.
Key findings:
• Sources of moral distress included: intrateam discordance in maintaining
non beneficial life-sustaining treatments, the lack of full disclosure and
compromises in informed decision making.
• Managing moral distress included maladaptive behaviours and included a
“pas-de-deux” where attempts to reconcile disparate views between team
members was used. Desensitization was also used and led to detachment.
• Constructive behaviours included: venting to colleagues, coming together as
a team, and utilising mentoring networks.
Appendices 209
How valuable is the research? This research provided valuable information on the sources of moral distress
within a team and including intrateam discordance. Sources of moral distress
included; disagreement between health professionals about a patient’s care,
initiating non-beneficial treatment, and a lack of full disclosure. Strategies for
managing moral distress included both constructive and maladaptive behaviours.
Citation: Henrich, N. J., Dodek, P. M., Alden, L. Keenan, S. P., Reynolds, S., & Rodney, P. (2016). Causes of moral distress in the
intensive care unit: A qualitative study.
Is there a clear statement of aims? Yes. To examine the causes of moral distress in the ICU team in community and
tertiary ICUs.
Is a qualitative methodology appropriate? Yes. Focus groups in ICU and community ICU and phone interviews. N=56. 19
nurses, 4 clinical nurse leaders, 13 physicians, 20 other allied health professionals.
Was the research design appropriate to address the Yes. The design was modified for one unit where conflict existed and so focus
aims of the research? groups were held separately for RNs and clinical nurse leaders.
Was the recruitment strategy appropriate to the No. There was little discussion on recruitment. ICU professionals in three hospitals
aims of the research? were invited to participate.
Was the data collected in a way that addressed the Yes. There was a clear description of data collection methods. Qualitative
research issue? researcher with experience. Regular team meetings with subject and concept
experts. Audio recordings and transcription.
Have ethical issues been taken into consideration? Yes. Ethical approval was obtained from University of British Columbia Research
Ethics Board.
Was the data analysis rigorous? Yes. Use of computer software and coding disagreement was discussed.
Key findings:
• Most common moral distress issues included, too much care at EoL, too
little care at EoL, poor communication, inconsistent care plans, issues
around EoL decision making, quality of care provided, lack of EoL
conversations and pain management
• Family issues contributing to moral distress included families wanting
aggressive care, families with unrealistic expectations, lack of
210 Appendices
communication to families, families given too much responsibility in
decision making and conflict with families.
• Patient care recommendations ignored and lack of voice for nurses
• Lack of support and resources: for adequate care, including equipment and
lack of management support.
How valuable is the research? This research provided valuable insights into the contributing factors for moral
distress across a range of professionals.
Citation: Pye, K. (2013). Exploring moral distress in pediatric oncology; a sample of registered practitioners.
Is there a clear statement of aims? Yes. To explore the perceptions of doctors and nurses working in a regional
pediatric oncology unit regarding their lived experience and feelings relating to
moral distress. To illuminate the understanding of team dynamics and the impact
on the team on moral distress.
Is a qualitative methodology appropriate? Yes. Qualitative methodology/ phenomenological. N=8. 4 doctors and 4 nurses.
Was the research design appropriate to address the Yes. Colaizzi’s (1978) descriptive phenomenology.
Was the recruitment strategy appropriate to the Yes. Used a poster to invite participation. Limited participation.
Was the data collected in a way that addressed the Yes. Used qualitative interviews with a hypothetical scenario.
research issue?
Have ethical issues been taken into consideration? No mention of ethical approval.
Was the data analysis rigorous? Yes. Rileys (1996) method of analysis.
Key findings (ten key findings reduced for discussion):
• Decision making needs to be shared and can contribute to moral distress.
• Quality of life is important in decision making.
• Conflict can arise over right to treatment and withholding treatment.
• Communication is important within the team to reduce moral distress.
How valuable is the research? Provided insight into the importance of shared decision making and
communication within the team to reduce moral distress.
Appendices 211
Citation: Thomas, T. A., Thammasitboon, S. F., Balmer, D. B., Roy, K. B., & McCullough, L. B. (2016). A qualitative study exploring
moral distress among pediatric resuscitation team clinicians: Challenges to professional integrity.
Is there a clear statement of aims? Yes. To explore moral distress among paediatric team clinicians within the context
of resuscitation experiences to determine if these posed challenges to professional
integrity.
Is a qualitative methodology appropriate? Yes. Qualitative semi-structured interviews. N=25. Physicians, nurses, respiratory
therapists and nurse practitioners.
Was the research design appropriate to address the Yes. Descriptive, exploratory design. Questions modified after pilot interviews.
Was the recruitment strategy appropriate to the Yes. Recruitment through a weekly PICU meeting. Equal numbers from each
aims of the research? profession included.
Was the data collected in a way that addressed the Yes. Qualitative interviews by one research team member.
research issue?
Have ethical issues been taken into consideration? Yes. Ethical approval from Bayer College of Medicine Intuitional Review Board.
Was the data analysis rigorous? Yes. Two researchers reviewed the data and create codes. Codes discussed and
refine. Confirmed themes with participants.
Key findings:
• Moral distress was identified:
o When there was a lack of understanding of the big picture.
o Where there was suboptimal team leadership.
o In experiences where there was variable meaning to resuscitation;
and
o Where there was uncertainty of role.
How valuable is the research? This study highlighted the importance of team leadership in resuscitation and the
contribution to moral distress. Professional integrity was challenged in situations of
moral distress.
Citation: Thorne, S., Konikoff, L., Brown, H., & Albersheim, S. (2018). Navigating the dangerous terrain of moral distress:
Understanding response patterns in the NICU.
212 Appendices
Is there a clear statement of aims? Yes. To investigate how direct care neonatal practitioners understand and
experience moral distress.
Is a qualitative methodology appropriate? Yes. Interpretive description. N=28. Professionals including physicians, RN’s,
pharmacists and social workers.
Was the research design appropriate to address the Yes.
Was the recruitment strategy appropriate to the Yes. Recruitment through departmental email, internal newsletter, poster and
aims of the research? snowballing. Difficult recruitment.
Was the data collected in a way that addressed the Yes. Individual interviews.
research issue?
Have ethical issues been taken into consideration? Yes. Ethical approval from University of British Columbia and Children’s and
Women’s Hospitals of British Columbia Research Ethics Board.
Was the data analysis rigorous? Yes. Word management software used. Constant comparative analysis of themes.
Key findings:
• The triggers for moral distress included clinical scenarios, organisational
culture and relationships within the team.
• The impact of moral distress and coping mechanisms included: avoiding
and blunting, reframing and rebooting, reflecting and philosophizing.
How valuable is the research? The findings of this study highlight the need to support practitioners and develop
collaborative team cultures to reduce the effects of moral distress.
Citation: Wall, S., Austin, W., & Garros, D. (2015). Organizational influences on health professionals’ experiences of moral distress
in PICUs.
Is there a clear statement of aims? Yes. To explore the organizational influences on moral distress for health
professionals working in intensive care units across Canada.
Is a qualitative methodology appropriate? Yes. Qualitative study (secondary analysis) of interview transcripts. N = 16. Nurses,
intensivists, dietician and social worker.
Was the research design appropriate to address the Secondary analysis of data used.
Appendices 213
Was the recruitment strategy appropriate to the Yes. Participants for the original study were recruited from six major PICUs. For
aims of the research? this study 16 of the transcripts were used for further analysis. Several disciplines
included.
Was the data collected in a way that addressed the Yes. Data for the original study was collected by interviews.
research issue?
Have ethical issues been taken into consideration? Yes. Ethical approval for original study.
Was the data analysis rigorous? Yes. Content analysis was used.
Key findings:
• Moral distress was influenced by: relationships with management,
teamwork and care processes, resources and broader societal issues.
• Team issues included hierarchy, decision making and lack of support.
How valuable is the research? This research highlights the importance organizational influences play in their
contribution to the moral distress experience.
214 Appendices
Appendix B Interview Questions
Exploring the phenomenon of moral distress in multidisciplinary teams

(MDTs) providing end-of-life care to patients
Interview Guideline
Ethics approval number: HREC/15/QPCH/230

Collection of demographic data including:
Profession of participant?
Number of years of experience?
Length of time within this team?
Current employment setting?
Participant role within the team?
Interview Question Guide
• What do you understand by the term moral distress?
• Have you ever experienced moral distress in a MDT (Multidisciplinary
team) setting caring for a patient at EOL?
• Can you provide an example of an experience of moral distress when
working in the MDT?
o Was your experience of moral distress influenced by other
members of the MDT in which you were working at the time?
o Did the team decisions influence how you felt about the care you
provided to patients?
o Did this experience impact on you professionally?
o Did this experience impact on you personally?
o How can practitioners address their moral distress within the
MDT setting?
215
Appendix C Ethical Approvals
216
217
218
219
220
221
Appendix D Participant Information Sheet
Participant Information Sheet
Exploring the phenomenon of moral distress in health practitioners, working in

multidisciplinary teams to provide end-of-life care to patients.
Ethics approval number: HREC/15/QPCH/230
What is the purpose of the research?
The purpose of this research is to understand the experience of moral distress of health
practitioners who work in multidisciplinary teams and provide end-of-life care to
patients. A better understanding of this phenomenon may potentially lead to
recognition of the experiences of moral distress and could potentially improve patient
care.
Moral distress has been defined as
“the pain or anguish affecting the mind, body or relationships in response to a situation
in which the person is aware of a moral problem, acknowledges moral responsibility,
and makes a moral judgement about the correct action; yet as a result of perceived
constraints, participates, either by act or omission, in a manner he or she perceives to
be morally wrong” (Nathaniel, 2003, p. 421).
In our care of an end-of-life patient we may feel that the patient should receive a certain
treatment or care as this would be what we see as ‘right’ treatment for this person.
However something stops us being able to give this treatment or care, or we give
treatment or care and then still feel the patient did not get the ‘right’ treatment or care.
As a result of this experience we may suffer ‘moral distress’.
What will I be asked to do?
Your participation in this project is voluntary and you may discontinue at any time.
You are invited to participate in an interview and a group discussion (focus group) to
talk about your experiences of moral distress. After the interview you may choose to
write a written reflection on your experience of moral distress and this will be
provided to the researcher. This can be further discussion from the interview, or
another experience of moral distress you wish to share. You may choose to participate
in the interview, focus group and/ or writing a reflection, or only the interview.
The interview will take approximately 45-60 minutes and will be arranged at a location
and time convenient for you outside of working hours. The focus group will take
approximately 60 minutes and will also be arranged at a location and time convenient
to suit the majority of participants outside of working hours. The written reflection, if
you chose to do this will be collected by the principal researcher in person. Prior to
participation in this research you will be asked to sign a consent form.
The interviews and focus groups will be audio-recorded.
222
Am I eligible to participate?
To be eligible to participate, you would:
• Be employed within the health team
• Care for patients at end-of-life
• Have the ability to read, speak and understand written English
• Be aged between 19-70 years of age
Risks and benefits
There is a small risk that you may experience psychological discomfort as you recall
events and share your personal experiences of moral distress. If this occurs the
interview will be stopped and you will be asked if you would like to continue with the
interview process before recommencing. Contact details of a qualified health care
professional or support group for ongoing support will be offered to you if you require
it. The principal researcher, Janice Layh, will offer to follow up with you if you would
like.
During the focus group practitioners will be expressing their opinions in a group
setting and there is the possibility of discomfort as some people have a fear of
expressing themselves in this situation. This may be related to the perception of being a
poor speaker and being judged by others, or the possibility of others disagreeing with
your opinions. To negate or minimise this discomfort a focus group Guideline sheet will
be provided to all participants to be involved in the discussion prior to commencing.
This guideline will outline expected behaviour and help you decide if you would like to
participate. The guideline will include the following statements:
• Everyone treats the others with respect
• Discussion needs to stay on topic and may be redirected at times by the
principal investigator
• Everyone needs to listen (even if they do not agree with what is being said)
• People speak one at a time during the discussion
• You can withdraw from the focus group and any time
• Information from the focus group will not be disclosed outside of the focus
group
Your personal insight and perspective into your experience of moral distress when
providing end-of-life care will be invaluable for this research.
Confidentiality and results
All information you provide during the interview will be audio-recorded, transcribed,
coded, analysed and summarised. The audio recording and the transcription of the
interview will be stored on a secure electronic drive only accessible to named research
team members. The common themes identified from the interviews will be used as
discussion points in the focus groups. No identifying personal data will be shared or
discussed.
223
Your personal information will be stored separately from the data so that you cannot
be identified. Participants will be identified by a unique code and these will be stored
separately to the data. No names or other identifying personal information will be
published or reported on in the presentation of results from the project. Identifying
information will not be available to any individual outside the research team. The
results of this research will be published as a thesis for a PhD and may be published in a
peer review journal and presented at conferences. The information will be presented in
such a way that you cannot be identified.
The data will be destroyed 5 years after the final publication arising from this project.
Please let the principal researcher know if you would like a summary of the themes
identified from the discussions.
Complaints / Concerns
This research will be carried out in accordance with the National Statement on Ethical
Conduct in Human Research (March 2007) produced by the National Medical Research
Council of Australia. This statement was developed to protect the interests of people
who agree to participate in research studies.
If you require any further information or if you have any problems concerning the
project you can contact the principal researcher Mrs Janice Layh; Ph 54575766/
0431797930 and email Jcope1@usc.edu.au
Concerns and complaints can be discussed with the Research Governance officer for the
SCHHS
PH: 07 54705580, or via email SC-Research-Governance@health.qld.gov.au
This study has been reviewed and approved by the Prince Charles Hospital Research
Ethics Committee. Should you wish to discuss the project with someone not directly
involved, in particular in relation to matters concerning policies, information and the
conduct of the study or your rights as a participant, or should you wish to make an
independent complaint, you can contact the Human Research Ethics Committee
Administrator, Ph. 07 3139 4500; Fax. 07 3359 5756; email: r&etpch@health.qld.gov.au
Contacts
The research team consists of Mrs Janice Layh, Dr Amanda Henderson and Prof
Margaret Barnes. We are very keen to include you in this research, if you are interested
and would like further information please contact:
Mrs Janice Layh (Principal Researcher)

Lecturer in Nursing and Midwifery
School of Nursing and Midwifery
Faculty of Science, Health and Education
University of the Sunshine Coast
Email: Jcope1@usc.edu.au
Phone: 07 5456 5766
The researchers and the University of the Sunshine Coast thank you for consideration of
this project.
224
Appendix E Consent Form
Exploring the phenomenon of moral distress in multidisciplinary teams

(MDT’s) providing end-of-life care to patients
Participant Consent Form
Ethics approval number: HREC/15/QPCH/ 230
Thank you for agreeing to participate in this important research study. Although
you may not benefit personally, you will help provide valuable information that
will provide a better understanding of the experience moral distress in health
professionals.
I have had the contents of this information sheet explained to me and I have
been provided with a copy. Please read the following carefully, and sign below if
you agree with these statements and are happy to participate in the study.
• I understand that in this research project the researchers are interested

in my experiences and opinions of moral distress when working in
multidisciplinary teams and providing end-of-life care to patients.
• I understand what my involvement in this research requires.
• I understand that there may be no direct benefit to me from my
participation in this research.
• I understand that all identifying information will be removed once all
data collection has finished and that there will be no means of identifying
me personally as a research participant in any publication, presentation
or other means arising from the research.
• I understand that electronic and hard copy information from the project
will be kept in a secure system for a period of 5 years after the project is
finished and then destroyed.
• I understand that my participation in this research is voluntary.
225
• I understand that I am free to withdraw at any time, without providing
reasons or comment and that my withdrawal will not affect me in any
way.
• If I do choose to withdraw from the research project at any time, any
information received from me that was obtained during the research will
not be used unless I state that it can be.
• I understand that if I have any additional questions I can contact Mrs
Janice Layh, the principal investigator or any other member of the
research team.
• I understand that if I have any concerns about the ethical conduct of the
project I can contact the Chairperson of the Human Research Ethics
Committee Administrator at the Prince Charles Hospital on PH: 07 3139
4500; Fax 07 3359 5756; email: r&etpch@health.qld.gov.au
• Any questions I had about this research project and my participation in it
have been answered to my satisfaction.
• I agree that researchers can contact me to confirm that I will participate
in the project.
• Complaints and concerns can be discussed with the following office:
• Position Research Governance Officer (RGO)
• Telephone 07 54705580
• Email SC-Research-
Governance@health.qld.gov.au
Participants Name (please print) ………………………………………………….
Signature ………………………………….. Date: ………………
226

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Janice Louise Layh

Submitted in fulfilment of the requirements for the degree of

School of Nursing, Midwifery and Paramedicine

University of the Sunshine Coast

Sippy Downs Drive, Sippy Downs, Queensland 4556

allied health professional

case study research

Moral distress is identified as a significant experience for health professionals in

What is the experience of moral distress in multidisciplinary teams providing end-of-

Social constructivism provides the philosophical paradigm for this research,

This research utilises a qualitative approach using an embedded multiple case

The findings of this research confirmed participants’ experience of moral

Discussion and conclusions

Moral distress remains an individual experience, but the context of working in a

Figure 2.1 Flowchart of search strategy for narrative review. ................................... 12

Table 3.1 Case One Participants ................................................................................ 59

ACSQH Australian Commission on Safety and Quality in Health Care

CPR cardiopulmonary resuscitation

E. coli Escherichia coli

EoL end of life

MDS Moral Distress Scale

MDS-R Moral Distress Scale-revised

MDT multidisciplinary team

NHMRC National Health and Medical Research Council

USC University of the Sunshine Coast

First and foremost, I give my heartfelt thanks to Associate Professor Amanda

To my incredible and supportive colleagues and friends in the School of Nursing,

I dedicate this thesis to my beloved parents who believed in the value of

Statement of Editorial Assistance

Statement of Commonwealth Assistance

1.2 CONTEXT OF THE RESEARCH, PURPOSE AND SIGNIFICANCE

Healthcare today is a highly complex and multifaceted environment which relies

What is the experience of moral distress in multidisciplinary teams providing

1.4 DEFINING MORAL DISTRESS

Andrew Jameton’s definition of moral distress (1984, p. 6) has been consistently

Morley, Ives, Bradbury-Jones, and Irvine (2017) identified 20 key definitions

1.5 DEFINING END OF LIFE AND MULTIDISCIPLINARY TEAMS

Equally, a lack of congruent definitions has complicated the definition of EoL.

1.6 THE RESEARCHER’S PERSPECTIVE

This research journey grew from an increasing frustration in my own clinical

1.7 THESIS OUTLINE

This thesis comprises seven chapters which are outlined below.

This chapter identifies the background, context, purpose, significance, and

Chapter 2: Literature Review

Chapter 3: Research Design

Chapter 4: Case One Findings:

Chapter 5: Case Two Findings:

Chapter 6: Discussion, Conclusions and Recommendations

2.2 PART ONE: A NARRATIVE REVIEW

• method of literature selection

• health professionals studied and context

• quantitative methods of study

• qualitative methods of study

• factors contributing to moral distress

• physical, emotional, and behavioural responses to moral distress

• strategies to address moral distress

• interventions for moral distress

• conclusion to the narrative review.

2.2.1 Method of Literature Selection