NURSES’ PERCEPTIONS OF CARING FOR DYING PATIENTS IN CRITICAL CARE: A

PHENOMENOLOGIC STUDY

by

Bruce Garwood

Copyright 2016

A Dissertation Presented in Partial Fulfillment

of the Requirements for the Degree
Doctor of Philosophy in Nursing

University of Phoenix
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 ABSTRACT

Dying with dignity in the critical care unit (CCU) is a difficult process to define and limited

information is available to assist with that definition. The purpose of this descriptive

phenomenological study was to explore the critical care nurses lived experiences of caring for

the dying patient in CCU. Understanding nurses’ perceptions and lived experiences of the

phenomena will contribute to nursing knowledge, new insights for nurse leaders, and the

possible development of a nursing model to guide nurses who are providing care to the dying

patient. A qualitative, descriptive phenomenological methodology was used to guide this study.

Twelve critical care nurses were recruited and interviewed, exploring their lived experiences of

caring for the dying patient in the critical care setting. Three board questions comprised the

interview guide allowing each nurse an opportunity to share their lived experiences of caring for

the dying patient. Five themes emerged from the data: communication, family, technology, lack

of education, and dying with dignity. Recommendations included early discussions with patients

and families regarding end-of-life wishes as well as, strategies for nurses providing end-of-life

care. The study participants also noted the need for increased awareness and education for

patients, families and health care providers regarding end-of-life care, dying with dignity, and

palliative and hospice referrals. Community education was also noted as an integral part of the

awareness process. For nurses and physicians, the education should start during their basic

education program and continue throughout their career especially those working in high acuity

areas in health care. As in life, death and dying are important aspects of all of health care

providers. Facilitating quality end-of life care could relieve pain and suffering for the dying

patient and assist family members with allowing their loved one, the patient to die with dignity.

iii
 DEDICATION

This work is dedicated to my wife, Becky who pushed me to start this educational

journey in 2005. Her support has provided me with the motivation to continue with my

educational aspirations and beyond even though she calls herself a “computer widow”. She has

told me more than once she will only take blame for the first degree but I still blame her and I

also thank her. Without her support I would have never made it as far as I have. She listened to

me complain about the workload, late nights, missed events, and many other aspects of life we

could have been doing instead of watching me at the computer. Her kind words and support will

always be remembered and as much as I may have completed this task she deserves just as much

credit.

This work is also dedicated to my family. I truly have been working on this paper and I

know I have missed far too many of life’s events as a family. For this I apologize and promise

that will change moving forward. I am guessing you will be tired of seeing but too bad, I will be

there.

iv
 ACKNOWLEDGEMENTS

This project has brought about a wide array of emotions in ways I have never

experienced in any other parts of my educational journey and life itself. Without the support of

my family, instructors, advisor, and my dissertation chair I would not be where I am today. This

support has allowed me to complete this dissertation journey and move forward using what I

have learned to benefit the nursing profession and myself.

I would like to acknowledge Dr. Anne Brett, dissertation chair for her unending support

though this educational journey. Her kind words and gentle pushes have meant more to me that

she will ever know. At times I have felt like I would never reach my goal of completing this

program and those kind words have allowed me to refocus and push me forward in a successful

manner. I have learned more than I could have ever imagined and I hope to use this new found

knowledge to take on the challenges of health care especially with the issues end-of-life care. I

am also grateful for my committee, Dr. Stephanie Hoffman and Dr. Samson Omotosho for their

timely and sincere feedback. I am fortunate to have such a helpful committee.

I would like to also thank my study participants. Their experiences as critical care nurses

and caring for the dying patients in an environment that may not be the best place to die, have

provided me with more data than I could have ever imagined. By sharing their experiences, I

now have a better understanding of death and dying and dying with dignity in the CCU.

Finally, I would like to thank Dr. Vivian Ott for her support and motivation throughout

this dissertation journey. This support helped me get through some tough times when my

motivation was low and quitting seemed like an appropriate option. For this I am forever

grateful!

v
 TABLE OF CONTENTS

Contents Page

List of Tables……………………………………………………………..….……….…………..xi

Chapter 1: Problem Formulation………………………………………………………………….1

Problem Statement………………………………………………………………………...5

Purpose of the Study…………………………………………………………………..…....6

Research Question………………………………………………………..………...6

Contribution to Nursing Knowledge……………………………………….7

Nature of Study…………………………………………………………….9

Theoretical framework ……………………………………………….……9

Assumptions………………………………………………………...…….11

Definitions of Terms…………………………………………….......…….12

Scope………………………………………………………..….………....13

Limitations……………………………………………….…..…………...14

Delimitations……………………………………………….………..…....14

Summary…………………………………………………………...……..15

Chapter 2: Literture Review …………………………………………………………...…….…..16

Historical Perspective of Death………………………………………………..………...16

Perception of End-of-Life Care: Family perspective...…………………………...17

The Dying Patient……………………………………………………..………….19

A Good Death…………………………………………….……………….……..20

Death with Dignity……………………………………………………….………25

Critical Care Nurse……………………………………………………….………27

vi
 Aging Population………………………………………………………..………...29

Phenomenological Research Design………………………………………….…...31

Research using Watson’s Theory of Human Caring…………………………....…34

Gaps in Research………………………………………..…………………..…….36

Summary……………………………………………..…………………..……….37

Conclusion…………………………………………………………………...……38

Chapter 3: Research Method and Design……………………………..…………………..…....….41

Quantitative or Qualitative Research Method…………………………………….…..…...42

Answering the Research Method Questions….........................................................43

Research Problem…………………………………….………………...…………46

Research Purpose…………………………………………………………...….….46

Research Method and Design …………………………….………………..……..47

Phenomenological Research Method……………………………………..….…...48

Interview Process………………………………………………………….……...49

Interview Guide……………………………………………………….…….…….49

Population…………………………………………………………….…….…….50

Sampling Method……………………………………………………….…….…..50

Data Collection………………………………………………………….….……..51

Informed Consent………………………………………….………………..…….51

Location of the Interviews…………………………….………………….………53

Interview Process……………………………………….………………….…….54

Pilot Study: Interview Questions…………………………….……………….…..56

Analyzing the Data……………………………………….……………….……...58

vii
 Rigor of a Qualitative Study……………………………………………...……….60

Conclusion……………………………………………….………………..………63

Chapter 4: Research Findings…………………………………………...………………..……….64

Data Review…………………………………………………..………………..………64

Pilot Study………………………………………………………………………..…….65

Table 1: Pilot Study Demographics…………………………………….…….….66

Participant Recruitment………………………………………………………….….….66

Table 2: Demographic Data…………………………………………………..…..68

Identified Themes……………………………………………………………….….…..68

Theme # 1 Communications………………………………………………...…...69

Subtheme Communications…………………………………………….….…70

Theme # 2 Family……………………………………………………….….…....71

Subtheme of Family…………………………………………………..….…...72

Theme # 3 Technology…………………………………………….……….……72

Subtheme of Technology…………………………………………….….……73

Theme # 4 Lack of Education………………………………………….…….…..74

Subtheme of Lack of Education…………………………………………..…..75

Theme # 5 Dying with Dignity…………………………………………….….…76

Subtheme of Dying with Dignity……………………........................….….…76

Table 3: Summary of the Themes and Subthemes……………………………...…..77

Conclusion………………………………………………………………………..……77

Chapter 5: Conclusions and Recommendations………………………………………….….……79

Research Method…………………………………………………………………..…..80

viii
Discussion of the Themes………………………………………………….……..…….81

Theme # 1 Communication…………………………………………………...…….81

Subtheme of Communication………………………………………….……..….82

Theme # 2 Family……………………………………………………….….…….…83

Subtheme of Family…………………………………………………….……..…85

Theme # 3 Technology………………………………………………….……..……85

Subtheme of Technology………………………………………………….…..…87

Theme # 4 Lack of Education…………………………………………………...…..88

Subtheme of Lack of Education………………………………………….…..…..89

Theme # 5 Dying with Dignity…………………………………………….……..…91

Subtheme of Dying with Dignity…………………………………….………..…92

Conclusion…………………………………………………………………………...…94

Recommendations………………………………………………………………...…....96

Nursing Education…………………………………………………………...….…..97

Medical Education……………………………………………………………....…..98

Community Education………………………………………………………………99

Communication………………………………………………………......………...100

Nursing Leadership…………………………………………………….…….…….102

Nursing Practice………………………………………………………...……...…..102

Further Research………………………………………...…........................….…....103

Table 4: Summary of Recommendations…………………………………..........…105

Summary………………………………………………………………………......106

Reflection……………………………………………………………………….…108

ix
References ………………………………………………………...….………………….....…....110

Appendix A: Informed Consent to Participate in a Research Study…………..……………....…131

Appendix B: Intereview Guide.…………………………………………….…………….…….133

x
 LIST OF TABLES

Table 1: Pilot Study Demographics………………………………….………………...…...…….66

Table 2: Demographic Data………………………………………………………………...…….68

Table 3: Summary of the themes and subthemes…………………………………………..…….77

Table 4: Summary of Recommendations……………………………………...…………..….…105

xi
 Chapter 1
Problem Formulation

The thought of a loved one dying brings a series of emotions, individualized for each

person and family member going through the dying process. Very little information is available

about the experiences of dying people and their families (McNamara & Rosenwax, 2007). When

that death includes pain and suffering, those emotions may become even more difficult for that

patient’s family. In an early article written by critical care nurses, frustration is noted about the

level of sickness entering into the critical care unit and those dying in that environment with

nowhere else to go (Wilson & Jacobson, 1990). Dying with dignity is a difficult process but

when that death has occurred within the critical care unit (CCU) that death may become even

more difficult to endure. The question arises, “Are critical care units prepared to provide end-of-

life care to an aging population?” (Critical Care Medicine, 2004). While the age of the dying

patient is not a primary focus of this study, it must be acknowledged as the population in the

United States continues to age. It is predicted that the 65 year or older population will double by

2030 creating an even greater stress on the critical care nurse caring for these patients (Jacobsen,

Kent, Lee, & Mather, 2011).

Improvements in technology within the CCU have prolonged life. The CCU provides

highly technical patient care but this technology may limit the appropriate end-of-life care

required for the dying patient (Beckstrand, Lynn, & Kirchhoff, 2006). When the limits of

medicine are not acknowledged in the critical care setting it may be considered a barrier to the

end-of-life (Coyne, 2010). The question then becomes, is that prolonged life the best result for

every patient in this setting? This ability to prolong life could include additional pain and

suffering for the critical care patient and families (Poles & Szylit, 2011). A death free of

1
suffering and stress while following the wishes of the patient and family should be considered a

dignified death (Wilson, Coenen, & Doorenbos, 2006). Defining a dignified death is not easy.

Factors such as culture, personal preferences, control and attitudes toward death can all play a

role in that definition (Wilson & Jacobson, 1990). If the patient has control of his or her care and

understands the significances of the care received regardless of the consequences which may

include death, then that death could be considered dignified (Wilson & Jacobson, 1990). The

definition of a dignified death continues to evolve and different components are added to the

process of dying. In a qualitative study conducted in 2010 several key themes were identified

supporting a good death (Griggs, 2010)

 Symptom control – symptoms identified and controlled promptly

 Patient choice – the dying patients wishes fulfilled

 Honesty – complete honestly at all times

 Spirituality – holistic care with a focus on spirituality

 Interpersonal relationships – working collaboratively to meet the needs of the dying

patient

 Communication – clear and complete communication between all team members

throughout the course of care for the dying patient

 Preparation and organization – maintain preparedness for a good death with good

communication between all team members

 Seamless care – complete and continuous care between all team members and the dying

patient.

2
These key themes were developed as a part of the patient focus, nurse focus, nurse/patient

relationship, team focus, and patient, nurse, team focus. Each of these key themes can assist in

providing a good death.

The attitudes of the critical care nurse can play a significant role in the dying process.

Many consider most critical care nurses attitudes toward death different from nurses working in

other areas of health care. Some critical care nurses see death as a failure in the care he or she

provided while others believe death should be as important as life and that death should be as

dignified as possible. An example of a nurse’s attitude toward death was illustrated by Mathiews

(2010) noting her own experiences with a patient’s death in the ICU. She coded a patient 28

times and was getting prepared to code that patient again. As she was getting ready for the 29th

code her charge nurse asked her what she was trying accomplish. That is when she realized she

was not going to save that patient and allowed the family to say their goodbyes as their loved

passed away. Was this a peaceful and dignified death? The futility of the multiple attempts to

resuscitate this patient was recognized by this nurse and her patient was allowed to die in peace

(Mathiews, 2010).

When the routine care of a patient moves from curative to palliative, some members of

the critical care team may consider that move a failure of the care provided (Morgan, 2008).

Palliative care uses a collaborative, multidisciplinary approach, providing care that assists the

patient nearing the end-of-life (Cure vs. Care, 2012). The multidisciplinary approach to palliative

care seeks early recognition of suffering and pain by developing a plan to reduce these issues

(Cure vs. Care, 2012). The process of shifting from curative to palliative care could move that

death to one of dignity and without suffering. A good death could be considered when a dying

patient is not allowed to die alone, experiences good pain control, excellent communication, and

3
ensuring the patient and families end of life wishes are met (Beckstrand, Lynn, & Kirchhoff,

2006). Curative and palliative care must co-exist in the critical care (Cosgrove, Nesbitt, &

Bartley, 2006). The move from curative to palliative care requires the health care team to

understand the futility of care and the ability to communicate that futility (Cosgrove, Nesbitt, &

Bartley, 2006). This movement from curative to palliative care has become an important

intervention in the United Kingdom and as palliative care becomes more prevalent so will this

movement in the United States.

Dying with dignity is a process that each nurse must consider, but it is an issue some

nurses avoid, just as those nurses may avoid the patient who is going through the dying process.

Many nurses struggle with death and the dying patient. This struggle may be related to a variety

of causes such as negative attitudes towards death and the uncomfortable feeling caring for the

dying patient gives them (Babgi, 2006). Babgi notes that this discomfort could be attributed to a

lack of education regarding the dying patient. The critical care nurses attitude toward death, as

noted previously may be targeted toward curative outcomes rather than palliative care. It is

important that each nurse’s attitude must focus on the patient and not on his or hers own feelings

when a critically ill patient enters the critical care setting. Many nurses avoid thinking about

death, especially when that death may be inevitable. Many times death is mismanaged

(McNamara & Rosenwax, 2007). Allowing that death to be dignified must become an important

part of a critical care nurses thought process looking at the patient in a holistic manner, through

life and through death. In a pilot study conducted in 2012, Hinderer explored the “lived

experience” of the critical care nurse and his or hers reaction to a patient’s death (Hinderer,

2012). Hinderer’s results illustrated four emergent themes: Coping, personal distress emotional

distress, and inevitable death (Hinderer, 2012). Hinderer (2012) believes further education and

4
continuing education will be pivotal to coping with a patient’s death in the critical care setting.

Understanding the essence and meaning of caring for the dying patient in the CCU and dying

with dignity and exploring his or hers deepest feelings about the dying patient can then be used

in conjunction with the previous studies.

Unraveling the thought processes of a critical care nurse could provide a means to expand

the understanding of the concept and facilitate the process of dying in a dignified manner in the

critical care setting. This study explored the essence, lived experience, and meaning of caring for

the dying patient in the CCU and dying with dignity based on in-depth interviews with critical

care nurses.

Problem Statement

The general problem which was the focus by this study is the lack of a clear and concise

understanding of dying in a dignified manner, especially in the critical care setting. More

specifically the problem being addressed by this study focused on the thoughts and experiences

of the critical care nurses caring for the dying patients in the CCU. The themes developed from

these thoughts and experiences could be used to develop a nursing model that could allow

patients to die with dignity while still in a CCU. Using a descriptive phenomenological research

design, data was analyzed from interviews exploring the perceptions, lived experiences, and

meaning of the critical care nurse regarding caring for the dying patient in the CCU and dying

with dignity. As the population continues to age and medical technology improves, the patient

population and acuity levels in the critical care unit will continue to rise and the number of

deaths will also rise. Dying with dignity is important and the nursing profession should be the

leader in the development of a definition that can be used universally (Adams, 2010).

5
Purpose of the Study

Dying with dignity within the CCU is not an easy process (Cook & Rocker, 2014). The

study noted previously (Mathiews, 2010), illustrating the critical care nurse coding the patient 28

times before the charge nurse confronted her and asked what she was trying to prove provides an

excellent example of an undignified death. As the environment of the CCU continues to evolve

with the implementation of technology, there is not a clear understanding of the concept of dying

with dignity within a CCU. Research studies focusing on dying with dignity have been

conducted but most of the research has focused on the family and physicians, and not on the

critical care nurse’s experiences. Very few studies explored the critical care nurse’s attitude

about death and dying with dignity, and this lack of information requires a more extensive study

progressing toward potential answers and solutions to dignified death in the critical care setting.

The purpose of this descriptive phenomenological study was to explore critical care

nurses lived experiences of caring for the dying patient in CCU. Nurses in critical care typically

are focused on providing the best possible care, with the primary focus on curing and less focus

on caring. In the critical care, death is often perceived as a failure. Therefore, the focus on dying

and dying with dignity may not be considered as important to some critical care nurses (Cook, &

Rocker, 2014). Understanding the perceptions of critical care nurses may facilitate changes in

practice and/or education to prepare nurses for the reality of patients dying in critical care

settings. A person’s culture, level of control, attitude toward death, and personal preferences

must be considered as factors for defining a dignified death (Wilson & Jacobson, 1990).

Research Question

The research question developed for this study is aligned with the purpose of the study:

6
  Research Question: - How do critical care nurses describe their lived experience of caring

for the dying patient?

A structured descriptive phenomenological research design was used to uncover possible

answers to this research question. The descriptive phenomenological research design consisted of

interviews providing an opportunity for critical care nurses to describe their perceptions and

lived experiences of caring for the dying CCU patient. Face to face interviews allowed the

critical care nurses participating in this study to tell their study, sharing their experience of caring

for the dying patient in the CCU.

Contribution to Nursing Knowledge

Exploring the concept of dying with dignity within the context of a highly technical

critical care environment is an opportunity to further develop the concept. Through an

exploration of the lived experiences of critical care nurses, understanding the essence and

meaning of caring for the dying patient in the CCU can provide important information for

education, practice and leadership (Holms, Milligan, & Kydd, 2014). This information can guide

current and future nurses in providing care for that dying patient in a dignified manner. The

critical care setting has become highly technical, and this technology has extended the lives of

the critical care patient significantly (Beckstrand, Lynn, & Kirchhoff, 2006). Understanding the

limits of this technology as it relates to a dignified death can eliminate that perceived barrier to

end-of-life care in the critical care setting (Coyne, 2010). Moving from a curative model of care

to a palliative model is another important step for the critical care nurse. Prolonging life is not

always the answer to providing high quality care in a dignified manner. As the patient moves

into the palliative care mode, the critical care nurse must embrace this change and allow the

7
patient to move to the next phase of life or death, depending on the underlying diagnosis of that

patient.

The attitude and perceptions of the critical care nurse play an important role in a patient’s

death. Understanding those attitudes and perceptions will assist the critical care nurse when

caring for the dying patient. The descriptive phenomenological research study design will allow

the researcher to engage in conversations with critical care nurses as they describe their thoughts

and perceptions of the critical care nurse as a mechanism for collecting data and information

(Englander, 2012). Understanding the lived experiences of critical care nurses will highlight the

essence, lived experiences, and meaning of caring for the dying patient in the CCU and dying

with dignity which could improve curriculum development and evaluation both in undergraduate

and graduate nursing education as well as critical care orientation programs (Schlairet, 2008).

A clear understanding of the phenomena of dying with dignity in critical care based on

perceptions and lived experiences of critical care nurses may provide nurse leaders with an

expanded understanding of the role of the critical care nurse. As budgets in health care get tighter

and tighter, a clear understanding of the phenomena of death with dignity in critical care may

add to the cost-benefit analysis when decisions are being made about staffing in critical care.

Nursing leaders will provide an important role in bringing change and supporting those changes

using a transformational leadership process (Adams, 2010). Developing a clear understanding of

dying with dignity in the critical care is an important step for the nursing profession and the

patients being cared for (Doorenbos, Wilson, Coenen, & Borse, 2006). If the phenomenon is

better understood, it may result in a change in the care provided to the dying patient and this

change can be facilitated with the direction of a transformational leader.

8
Nature of the Study

Qualitative research is best understood from a specific paradigm that apprises a

theoretical perspective (Broido & Manning, 2002). This theoretical perspective can then shape

the methodology used in any given study. The critical care nurse confronts countless phenomena

in the CCU. Through research, the phenomenon can be studied, seeking answers to the multitude

of questions that may arise from the perceptions of the critical care nurse. Qualitative research is

considered interpretive and textual allowing for observation, interviews, and analysis of data

collected (Risjord, Moloney, & Dunbar, 2001). Nursing focuses on the human experience,

preventive health, disease processes, and death (Trossman, 2010).

The nature of this phenomenologic study is to understand the thoughts and experiences of

the critical care nurse regarding dying with dignity in the critical care unit. Using a descriptive

phenomenological research design methodology will provide a means to explore critical care

nurses’ perceptions of the phenomena of dying with dignity in a CCU. In-depth interviews were

used to explore those perceptions of the critical care nurse. Each critical care nurse shared their

stories and experiences caring for the dying patient and dying with dignity. The data collected

was analyzed and coded allowing emerging themes to evolve.

Theoretical Framework

Dying with dignity is an important aspect of this research study. Dignity is defined as a

natural characteristic of a human being and a quality of self and behaviors demonstrated with

respect to others (Fahlberg, 2014). Fahlberg also noted dignity is a complex concept and may be

different from one person to the next. Watson’s Theory of Human Caring was used as the

theoretical framework to guide this research searching for the essence and meaning of caring for

9
the dying patient in the CCU and dying with dignity. Watson’s Theory of Human Caring

focuses on the holistic care provided to the patient and the relationship between the nurse and the

patient (Lukose, 2011). There are four elements to Watson’s theory: the caritas process,

transpersonal caring relationship, caring moment, and caring healing. Each of these elements will

be described focusing on the dying patient and how this theory can be used to illicit dying with

dignity in the CCU.

The caritas process is the first element of Watson’s theory. Caritas is derived from a

Greek word meaning to cherish and give special loving attention (Lukose, 2011). The caritas

process encourages nurses to practice using the art of caring and healing. Included with this

process is a spiritual component. The relationships developed between the nurse and the dying

patients and family members provide an atmosphere of caring which increases the level of the

relationship that has formed. Watson (2008) described cultivate spirit and soul using words such

as beauty, silence, nature, art, prayer, and universal love. The connection made between the

nurse and dying patient could serve both well in providing an atmosphere of caring and dignity.

Transpersonal caring relationship focuses on the caring-healing consciousness building a

connection or relationship. This relationship captures the spiritual dimensions shared by all

humans leading to a deeper self, others, nature, and the universe (Watson, 2002). This element

allows the nurse and dying patient a means of developing a deeper relationship through caring

and understanding while developing a spiritual component to this caring process.

Caring moment is the moment the nurse and patient come together creating human caring

(Lukose, 2011). This relationship bodes well with the bond a nurse and dying patient can build

preceding the death of that patient. The family is an integral of this bond and should be included

10
in all aspects of care, the dying process, and dying in a dignified manner. The human to human

relationship developed in the critical care unit while caring for the dying patient and family can

and will be remembered long after death has occurred and becomes an important part of the

grieving process.

Caring healing allows the nurse to go into a deeper level of skills and practices

connecting the nurse and the patient at an even higher level of energy (Lukose, 2011). Caring

healing goes beyond the caring moment and the healing moment. As in all of the elements, it

should be noted that healing should be integrated into all aspects of the care of the dying patient.

Caring and healing goes on long after the death of the dying patient.

Assumptions

The primary assumption for this study focused on the critical care nurses participating in

this descriptive phenomenological research study assuming they will be motivated and willing to

share their thoughts and perceptions regarding dying in the CCU. Sharing includes truthful

reminiscences of the dying patient experience and willingness to bring those thoughts and

memories to the forefront as they tell their story. This willingness to share perceptions should

provide a multitude of themes related to the dying patient and dying with dignity in the CCU. As

a critical care nurse and primary researcher for this study it becomes important to include similar

stories and experiences with each study participant. Knowing and learning from each study

participant provides a deeper understanding of the dying process (Magilvy & Thomas, 2009). It

is also assumed the primary investigator remained objective across all spectrums of this

qualitative study.

11
Definitions of Terms

The following conceptual definitions provide a clear, concise, and functional meaning

and understanding of terms which may have multiple connotations and understandings for those

reviewing this research study

Critical Care Nurse: A critical care nurse, a licensed professional nurse is defined as a

licensed professional nurse with the responsibility of providing care to acutely and critically ill

clients and their families (American Association of Critical Care Nurses, 2014).

Critical Care Unit: A critical care unit is defined as any unit accepting critically ill or

acutely ill patients (Kirchhoff & Dahl, 2006). A critical care unit, sometimes referred to an

intensive care unit is designed to provide specialized care to the acutely and critically ill patients

(Lewis, Dirken, Heitkiemper, Bucher, & Camera (2011). The critical care unit provides highly

technological care including continuous monitoring at all levels. Monitoring includes vital signs

both external and internal, pulmonary artery monitoring, intracranial pressures,

electrocardiograms, and multiple other processes depending on the critical care unit.

End-of-life or Death: End-of-life is considered the final phase of life when death is

imminent (Lewis, Dirken, Heitkiemper, Bucher, & Camera (2011). The time of death varies

depending on the diagnosis or extent of the terminal illness.

Dying: Everyone dies and each death is unique to the individual who is dying (Guerrero

& Noronha, 2005). Dying is the approach towards death or nearing the end of life. Dying is a

combination of more than a physical process. Dying is also psychological, social, cultural, and

spiritual (Guerrero & Noronha, 2005).

12
 Palliative Care: Palliative care is defined as a means to prevent and relieve suffering,

while providing care that will enhance the quality of life for the dying individual at any stage of

the disease or dying process (Matzo, 2011).

Curative Care: Curative care in the critical care setting focuses on the disease or

condition of the patient while targeting or curing that disease or condition (Zomorodi & Lynn,

2010). Curative care does not focus on the patient’s values, beliefs, and desires (Zomorodi &

Lynn, 2010).

Scope

This descriptive phenomenological research study was conducted through a series of

interviews using critical care nurses as the participants. These interviews focused on the

described experiences of the critical care nurse as he or she cares for the dying patient in the

CCU. This descriptive phenomenological study explored the lived experience of critical care

nurses to understand the essence and meaning of caring for the dying patient in the CCU and

dying with dignity.

A sample of twelve critical care nurses was recruited from two Midwest states, Indiana

and Michigan. These critical care nurses were interviewed, face to face, in a private, quiet area to

eliminate any risks of interruption or disruption. The recruitment process was conducted using a

membership email data-base, publically available to all members of the American Association of

Critical Care Nurses. Sample recruitment continued until data saturation was achieved. A series

of questions based on the review were asked, focusing on the dying patient and dying with

dignity in the CCU. These interviews provided the primary researcher with information about the

thoughts and experiences of the critical care nurse and how each nurse perceives the act of dying

13
and dying with dignity in the CCU. These perceptions and lived experiences became shared

experiences and stories, allowing the primary researcher and the critical care nurse an

opportunity to share each other’s perceptions of dying and dying with dignity in the CCU

(Donalek, 2005).

Limitations

The limitations for this phenomenological study include the process of self-reporting

from the perspective of each critical care nurse. Recalling all aspects of the dying process and

factors related to dying with dignity may be difficult due to time factors and emotions attached to

each lived experience. The descriptive phenomenological study was conducted in the

Midwestern part of the country which may limit the applicability of the findings to other

geographic regions. A final limitation to be considered is the novice researcher conducting this

study and all efforts that will be made to remove any biases and to conduct the research

following the protocol described.

Delimitations

Delimitation is considered the choices set by the researcher. This descriptive

phenomenological study is delimited to one geographical area. Expanding outside these

geographical limits would have required increased expenses that is not necessary to obtain the

data and information being searched for in this study. Different experiences could be shared from

a larger sampling but data saturation determined when the study can be stopped.

14
Summary

Chapter one included the introduction to the topic of dying with dignity in the CCU along

with the background of this subject. The problem statement, purpose for the study, and the

research questions set forth for this study followed. The general problem which is the focus by

this study is the lack of a clear and concise understanding of dying in a dignified manner,

especially in the critical care setting. More specifically the problem being addressed by this study

focused on the thoughts and experiences of the critical care nurses caring for the dying patients

in the CCU. Understanding the nurse’s perceptions of death with dignity in the CCU may result

in changes in practice and education preparing critical care nurses for practice. The growing

population continues to age and the number of dying patients in the critical care setting will

continue to increase. Dying in a dignified manner will become more important than ever. The

purpose of this descriptive phenomenological study was to ask critical care nurses to share their

lived experiences of caring for the dying patient in CCU, to explore the essence, and meaning of

dying with dignity in a critical care setting. This study was conducted using a descriptive

phenomenological research design. Chapter two discusses the literature that supported the

development of this study.

15
 Chapter 2

Literature Review

An extensive literature review was conducted for this research study. Several databases

were used for this process including the Cumulative Index of Nursing and Allied Health

(CINAHL), Nursing OVID, ProQuest Health and Medicine, EBSCOhost, and Medline. The

inclusion criteria included peer reviewed articles written in English, published between 1990

and 2015. Key words and terms used in this literature review included death, dying, dignity,

critical care, nurses, nursing, dying with dignity and nursing care, dying with dignity in the

critical care, and lived experience of the critical care nurse with dying with dignity.

Summary of literature searched by categories

Search Terms Peer-reviewed Articles Dissertations/Theses @

University of Phoenix
Dying with Dignity and 236 72
Nursing Care
Dying with dignity in the 110 73
Critical Care
Lived Experience of the
Critical Care Nurse and Dying 53 59
with Dignity

Historical Perspective of Death

Death is one of the few inevitabilities of life. Everyone dies the process of dying has

changed over the years. Before the 20th century death usually occurred early in life from illness,

disaster, or violence (Carr, 2012). During this time period death was usually unexpected and

occurred quickly. In this modern era, death usually occurs later in life with many of those deaths

being related to long term, chronic illnesses such as cancer, chronic obstructive pulmonary

disease, or cardiovascular disease. Regardless of the time of death periods of discomfort and

16
distress are common amongst the family and friends of the deceased. Death is often denied in

modern society even though some individuals may realize death may occur sooner than later.

Some individuals, according to Carr (2012) notes two preferences to one’s death may

take place. The first is preference is the alignment of advanced directives exerting or controlling

how that person prefers to die. The second preference is preservation of the dying persons “self”

or how that person wants to be viewed after death. Unfortunately, many individuals do not

prepare for death and this lack of preparation could muddle how that induvial dies regardless of

the untold means of death that person may prefer. Untimely deaths also create many emotional

and distressing challenges for family and friends. This lack of preparation may impede on the

expectations of a “good death” which could increase the stressors of each death even more.

Perception of End-of-Life Care: Family perspective

The certainty of death for everyone does not lighten the level of stress and emotions of

the dying person and the family and friends who care for that person (Fridh, 2014). The

perspectives of the dying patient and family regarding end-of-care can be found in several

studies conducted around the world. In a study conducted in Canada, end-of life care from the

family perspective was researched (Heyland et al, 2006). An extensive search of literature, focus

groups, and interviews was conducted the authors a list of 28 elements related to quality end-of-

life care were established. Questionnaires were then developed and administered, face to face, to

older adults and their families. These older adults had advanced cancer or an end stage disease. A

total of 440 patients and 176 family members were administered this questionnaire. The three

items that were perceived as the most important were:

 To have trust and confidence in the doctors looking after you

 Not to be kept alive on life-support, when there is little hope for a meaningful recovery

17
  That the information about your disease is communicated to you by your doctor in an

honest manner

These items are important to the dying patient and family members and their results illustrated a

need for customized, individualized plans of care for each dying patient.

Another study conducted in 2013 searched for the perspectives of the family members

after their loved one had died. The researchers identified the importance of “death with dignity”

to the patients and family members (Gennip, Pasman, Kaspers, Oosterveld, Willems, Deeg, &

Onwuteaka-Philipsen, 2013). There were 163 caregivers of deceased patients participated in a

self-administered survey. Several factors to a death with dignity were identified

 Patients feeling peaceful and ready to die

 Absence of anxiety and depressive mood

 Clear explanation by the physician of the treatment options during the final months of life

This study also identified several factors that diminished a death with dignity

 Unable to think clearly

 Sense of no control

 Incapable of own body care

 Unable to accept things as they are

This study illustrated the importance of the combination of physical and psychosocial conditions

that contributed to a “death with dignity.” The death of someone touches the lives of many

people and understanding their loved one did die with dignity assists them as they move on with

their own lives (Wilson, Coenen, & Doorenbos, 2006).

The Dying Patient

18
 The death of a patient should be, whenever possible, as dignified as possible. One

definition of dignified death is a death without stress and suffering following the wishes set forth

by the patient and family (Wilson, Coenen, & Doorenbos, 2006). This definition was developed

from a quantitative study conducted in 2001-2002 surveying 289 nurses with an expertise in end-

of-life care.

Dying within the hospital setting is difficult enough but when that death occurs in the

critical care setting, that death becomes even more intense. Approximately 540,000 people die

within the critical care; annually that amounts to 59% of all hospital deaths occurring in the

United States each year (McAdam & Puntillo, 2010). These numbers equates to one in five

deaths occur in the critical care setting and a total of 80% of all terminal inpatient expenses. The

critical care nurses attitude plays an important role when caring for the dying patient and whether

that death is dignified or not. When the decision is made to withdraw care for a patient dying in

the critical care the stress levels and anxiety increases for everyone, including the critical care

nurse. These increased stress levels have the potential to affect the quality of care provided to the

patients in the critical care setting (Sorensen & Iedema, 2009). Increased stress or emotional

labor was studied by Sorensen and Iedema in Australia using a multi- method qualitative

ethnographic study. This study was conducted in an intensive care unit in Sydney, Australia and

provided evidence that stress related to caring for the dying patient did have a direct effect on the

nurse caring for those patients.

The death of a patient may be considered a failure in the care that was provided by the

critical care nurse for that patient (Morgan, 2008). Little if any education or orientation is offered

to a nurse entering the critical care setting in regards to the dying patient other than patients die

more often in this setting than in any other areas of an acute care facility. When the care of a

19
patient moves from curative to comfort care, dying may be considered a failure by some critical

care nurses (Morgan, 2008). The critical care setting offers high-tech care to patients admitted

into this area of care, and this high-tech care focuses on curing rather than comfort (Coyne,

2010). Failure to acknowledge the limits of medicine in the critical care setting is considered a

barrier to the quality of end of life care and dying with dignity.

A Good Death

A quantitative study by Beckstrand, Lynn and Kirchhoff (2006) explored the nurse’s

perceptions of a ‘good death.’ The findings of this study were based on surveys from 821 critical

care nurses which generated 530 suggestions for the meaning of a good death. The authors of

this study describe a ‘good death’ as a major theme while ensuring a dignified death for the

critical care patient. The researchers recommended that further research be done to determine if

the critical care setting providing highly technical patient care provides the opportunity for

appropriate end-of-life care required to allow for a good death.

Increased pressures may soon be placed on the critical care team if proposed changes are

enacted by the policymakers and administrators seeking to improve quality measures in the

critical care setting. An area currently in the sights of these policymakers is the formulation of an

end-of-life quality metrics system that will improve that end-of-life care (White, Ernecoff,

Billings, & Arnold, 2013). The authors note the increased push to die at home if that is the only

course of action left for the dying patient. Many critically ill patients want to avoid the high

intensity care provided in the critical care unit but still want to survive if surviving is a viable

option. This conflict between avoiding high intensity care and surviving must be a balanced

decision made by the critically ill patient, family, and the critically care team. This same conflict

can be taken one step further when dying becomes the only option. Not all deaths in the critical

20
care unit (CCU) are undignified but the defining characteristics of a good and/or bad death

require clarity. This clarity will assist the clinicians with a means of defining the death of a

critically ill patient.

A good death, according to critical care nurses in Thailand can occur once the

inevitability of death is accepted and the focus turns to comfort care rather than curative care

(Kongsuwan, 2011). Kongsuwan interviewed ten intensive care nurses, studying the perceptions

of those nurses as it relates to dying peacefully. The results illustrated the need for a better

understanding the importance of end-of-life care through themes developed from the data

collected. A literature review was included in this study illustrating some cultural variations

noted from previous studies. Beckstrand, Lynn, & Kirchhoff (2006) conducted a study that

included a survey of over 1400 critical care nurses who were members of the American

Association of Critical Care Nurses (AACN). Members of the AACN provide a cultural mix of

nurses from around the world (American Association of Critical Care Nurses, 2015). Providing

a good death was the major theme derived from the study. Numerous suggestions were include in

this study offering ways that would assist with the process of dying in a dignified and peaceful

manner.

When there is a death in the critical care setting, what is the quality of the end-of-life care

for the dying patient? This question may be difficult to answer. Although the quality of the end-

of-life care may not be a direct reflection on the critical care nurse and the care he or she

provides, the potential for increased pressure placed upon that nurse will certainly add to the

many burdens this position already has (Mealer, Shelton, Berg, Rothbaum, & Moss, 2007). The

results of their study illustrated the higher of number of instances of post-traumatic stress

disorder (PTSD) suffered by critical care nurses compared to the general nurses surveyed in this

21
study. Some of the PTSD symptoms noted were inability to sleep, nightmares when sleep did

occur, and increased anxiety including panic attacks. The pressures of caring for the dying

patient are already elevated and with the addition of PTSD the level of anxiety is even higher.

As noted previously, a definition of a dignified death was noted but in reality there are a

multitude of definitions that may be considered. A dignified death may be defined differently for

every patient. As long as the responsive patient has control of the treatment plan and understands

the consequences of that treatment plan, both positive and negative, as in life and in death can be

considered dignified (Wilson & Jacobson, 1990). This reference, based 25 years ago, illustrates

three situations in the ICU setting related to the dying patient as it relates to a dignified death.

The primary barrier to a dignified death was lack of communication within the critical care team.

Physicians focused on a curative treatment and steered away from any discussion of terminating

treatment and allowing the patient to die with dignity (p. 40). Current research illustrates a

greater desire to provide appropriate end-of-life care in a dignified manner. Moving from a

curative care, when appropriate toward comfort care is becoming a faster process but barriers

still exist. Lack of adequate time was noted as a primary barrier to a dignified death along with

staffing patterns and shortage of nurses following closely behind (Beckstrand, Lynn, &

Kirchhoff, 2006). Another barrier noted by critical care nurses in this survey conducted by these

authors was the administrative consideration of the dying patient. Critical care nurses noted the

dying patient was considered “less work” and staffing was adjusted to accommodate other

patients admitted to the critical care unit. In reality, the dying patient requires much more work

and the critical care nurse must have a clear understanding of how to care for the dying patient

and possess a higher level of skills in order to provide a dignified death.

22
 Many critical care nurses attitude toward death vary with many considering death as a

failure in the care he or she provided. Moving from a goal of curative to a goal of comfort is

imperative in allowing a patient to die in a dignified manner (Vanderspank-Wright, Fothergill-

Bourbonnais, Malone-Tucker, & Silvar, 2011). Vanderspnak et al used the topic of good end-of-

life care and formulated a set of strategies and interventions to assist the new nurses entering into

the CCU. The interventions developed to enhance the end-of-life care for that new nurse are:

 Acknowledging that dying in the ICU is different

o New nurses feel guilt when a patient dies but the realization that dying is not the

same in the ICU those nurses can move toward a better understanding of the

dying process.

 Avoiding the dichotomization of "good care" and "end-of-life care"

o Lack of experience and knowledge contributes to lack of differentiating “good

care” and end-of-life” care for the dying patient. Through experience and

education the ICU nurse learns the difference and adds this skill to his or hers

skill base.

 Orientating nurses to ICU--Realities and challenges

o Acknowledging and ensuring end-of-life care and the dying patient is included in

the orientation process for the new nurse.

 Role modelling experience in end-of-life care

o Sharing experiences alongside the experienced ICU nurse enhances a better

understanding of the dying process in the ICU.

 Time for reflection

23
 o Provides time to reflect and to be debriefed when a patient dies. This reflection

allows the new to nurse to absorb their own feelings.

 Informal and formal support

o Support during difficult times is important. Fellow nurses, mentors, and axially

staff can provide this support, answer questions, and allow for reflection.

 At the end of the day

o End-of-life care can be rewarding to those nurses taking pride in the care being

provided. Death is a reality and in the ICU those deaths happen more often than

anywhere else. Providing excellent care is important.

The critical care nurses attitude may create a barrier to moving from cure to a comfort

goal. Mathiews (2010) documented her own experiences related to a patient dying in the critical

care setting. She was caring for a patient she had coded 28 times and as she prepared to start the

29th time, her charge nurse asked her what she was trying to accomplish. It was that moment she

realized she was not going to save this patient and she allowed the family to say their goodbyes

and allowed that patient to die peacefully. Unfortunately, this death could not be considered

dignified or peaceful. This type of situation is not typical and it is also not an isolated one either.

The critical care was designed to the save the lives of the critically ill (Espinosa, Young,

& Walsh, 2008). Espinosa et al conducted a literature review searching for barriers to moving

from a curative mode of care to one of caring for the dying patient. Twenty two studies were

reviewed related to the delivery of terminal care. Eight barriers to moving from a curative mode

of care to one of caring were found. The barriers included:

 Lack of involvement in the plan of care for the dying patient

 Disagreements within the care team

24
  Inadequacy of pain control

 Unrealistic expectations of families

 Nurses difficulty coping

 Lack of experience and education

 Staffing

 Environmental reasons

The researchers noted the need for further studies as this topic continues to evolve.

This orientation toward patient care and death lacks any significant research or

documentation. The extensive literature search provided minimal information with most studies

originating in countries other than the United States. The implication of the critical care nurses

attitudes toward death requires further research to uncover why these attitudes are varied, noting

attitudes at both ends of the spectrum of care for the dying patient. The perceptions of the critical

care nurse are comprised of the stressors related dying and barriers that may interfere with dying

in a dignified manner. Providing data from the perceptions of the critical care nurse as it relates

to the dying patient could provide the base for further research studies and potential tools or

models to providing care to the dying patient in a dignified manner (Espinosa, Young, & Walsh,

2008).

Death with dignity

Death and dying are a part of everyone’s life cycle. This inevitable fact of life cannot be

changed but the highly technological critical care units can prolong this unavoidable event

(Cook, & Rocker, 2014). If a life is prolonged due to the advances in technology in the CCU and

goes against the wishes and values of the patient and/or family this would not be considered a

dignified death. As nurses, caring for a patient who is going to die is not an easy process. As a

25
novice nurse, the focus is on the patient as a person but over time the focus becomes broader

(Caton & Klemm, 2006). The focus, hopefully then becomes on the preservation of dignity and

providing the patient with a dignified manner of dying (Mathiews, 2010). Each death is an

individual event for the nurse and each of those deaths become a part of the soul of that nurse.

In a study conducted in 2003, dignity as defined by the patients and families was

described as a complex phenomenon with detailed themes such as being human (being worthy of

respect), having control (over decisions, body, behavior, and what is happening), relationships

and belongings (being heard and understood), and maintaining individual self (independence,

individuality, having needs met) (Enes, 2003). The researcher conducted in-depth interviews

with eight patients, six relatives, and seven members of a multiprofessional team. This study

concluded that more research is required due to the limited information currently available and

education would be the key element to defining dignity. Providing the much needed end-of-life

care can be challenging and these challenges requires balancing the multiple tasks necessary for

the dying patient and family.

Educational deficiencies still exist with end-of-life care and these deficiencies could be a

contributing factor toward the incomplete defining components of dying with dignity. In a study

conducted in 2009, a state wide survey was conducted with 567 nurses responding. Knowledge

deficiencies, related to end-of-life care were noted in 21 of 23 topics used for this survey

(Schlairet, 2009). Schlairet noted content, process, and outcomes of existing undergraduate end-

of-life education require evaluation and shortfalls need to be identified and addressed. The

importance of end-of-life nursing education must be understood by both the faculty and those

receiving this education. Nursing orientation should also be structured to include end-of-life care.

26
The inclusion of extended end-of-life education in the CCU could better prepare the new critical

care nurse entering into this area of health care.

Critical Care Nurse

Critical care nursing is a relatively new addition to modern day health care. The first

critical care units did not emerge until the 1950s and these units provided care for the critically

ill patient (American Association of Critical Care Nurses, 2014). As the complexity of the

critically ill patient has increased so has the technologically, specialized knowledge, and skills

necessary to care for those patients. The evolution of the CCU and nurse continue to advance to

meet the demands of the aging population, increasing comorbidities, and the advancement of the

medical field. The critical care nurse is a licensed professional nurse, trained to deal with the life-

threatening problems of the critically ill patient (American Association of Critical Care Nurses,

2014). As in all levels of nursing, the family is an important component of this specialized care

and the family is included in all levels of care provided to the critically ill patient.

According to the American Association of Critical Care Nurses (2014), the critical care

nurse practices in settings that require complex assessment and high intensity therapies and

interventions and continued nursing vigilance to care for the critical care patient. Included in the

highly specialized level of nursing is the importance of patient advocacy. American Association

of Critical Care Nurses define the advocacy of the critical care nurse as follows

 Respect and support the right of the patient or the patient's designated surrogate to

autonomous informed decision making.

 Intervene when the best interest of the patient is in question.

 Help the patient obtain necessary care.

 Respect the values, beliefs and rights of the patient.

27
  Provide education and support to help the patient or the patient's designated surrogate

make decisions.

 Represent the patient in accordance with the patient's choices.

 Support the decisions of the patient or designated surrogate, or transfer care to an

equally qualified critical care nurse.

 Intercede for patients who cannot speak for themselves in situations that require

immediate action.

 Monitor and safeguard the quality of care the patient receives.

 Act as a liaison between the patient, the patient's family and other healthcare

professionals.

The educational requirements of the critical care nurse can be at the diploma level up to

the doctoral degree. Requirements will vary depending on the health care organizations policy

and procedures of that facility. Certification of the critical care nurse is not mandatory but about

50,000 critical care nurses, worldwide achieve and maintain that certification (American

Association of Critical Care Nurses, 2014). While there are multiple certifications available for

the critical care nurse, the Critical Care Registered Nurse (CCRN) is one of the most frequently

sought after certification. The certified critical care nurse validates that nurses continuing

knowledge and improvement of current practices in the critical care setting. Recertification for

the CCRN certification is required every three years with a minimum of 100 hours of continued

education to maintain that certification. This validation or motivation to stay current with the

skills and knowledge necessary to care for the critical care patient will provide that patient with

the care necessary to improve overall health and move to the next levels of care (American

Association of Critical Care Nurses, 2014). It should be noted that the critical care nurse

28
provides the same high levels of care to the critically ill patient and the dying patient admitted

into the critical care unit. As the population continues to grow and patients continue to live

longer, caring for the dying patient in the CCU will be as just as important.

Aging Population

The process of aging or going older is one that cannot be stopped. It is a fact of life and

something that every critical care nurse must take into consideration while caring for the older,

critically ill patient. The Administration of Aging (2014) notes that about 40 million older people

(65 year of age or older) are currently living in the United States and are predicting the

population of older adults will increase to over 72 million by 2030. Approximately 42% to 52%

of the critical care admissions are occurring in the United States each year (Pisani, 2009). As the

population continues to age the physiologic changes occurring in the older patient will impact the

care necessary for the older patient in the critical care. Three physiological changes in the older

adult entering into the critical care unit that have major implication to the older patient are

cardiovascular issues such as heart failure and valvular dysfunction, pulmonary-related changes,

and renal dysfunction.

There are many increased risks for the older patient such as sepsis and delirium and

management of these illnesses can be difficult depending on the fragility of the older patient

being cared for. Delirium is common with the older patient and may result in other adversities

for that patient in the critical care unit. The older population, greater than 85 years of age which

makes up about 1.5% of the current population in the United States that number will increase to

5% by 2050. Mortality rates for a single organ failure will range from 30% to 70% and increase

to 80% mortality multiple organ failure patients in this age group. The impact of caring for the

29
older patient on the critical care nurse is extremely high. Patients and families are willing to

allow or continue care on this population even when the research illustrates survival may not be

possible. Age is considered a risk factor that can be difficult to overcome with some older

patients (Niccoli & Partridge, 2012).

Caring for all patients in the CCU is stressful and caring for the aged only increases the

level of stress. The overall demand placed on the critical care nurse is virtually unknown but the

prevalence of post-traumatic stress disorder (PTSD) has been considered as a possible effect of

working in this environment (Mealer, Shelton, Berg, Rothbaum, & Moss, 2007). In a study

conducted in 2007, 24% to 29% of the critical care nurses surveyed reported some signs and

symptoms of PTSD compared to 14% for the general floor nurse. Some of the events related to

possible PTSD are exposure to post mortem care, watching patients die, involvement in end-of

life care, performing cardiopulmonary resuscitation, and providing futile care for the critically ill

patient. PTSD is more prevalent in the CCU and for the critical care nurses who work there

(Mealer, Shelton, Berg, Rothbaum, & Moss, 2007). Increased signs of anxiety and depression

have been reported by nurses working in this area of health care and little is known about the

necessary care for these nurses. The stress placed upon a critical care nurse cannot be

overestimated and factors related to this stress such as caring for the older population must be

addressed sooner than later. Using a descriptive phenomenology research method provides a way

to discover the level of stress the study participants may have caring for the dying patient in the

CCU.

30
Phenomenological Research Design

A descriptive phenomenology research method was chosen as the research method for

this study based on the following research question

 Research Question #1: - How do critical care nurses describe their lived experience of

caring for the dying patient?

Answers to this question can best be sought using a qualitative research method. Seeking new or

revised answers to the perceptions and lived experiences of the critical care nurse using a

qualitative research method provides the researcher with a means of knowing and learning about

that experience (Bailey, 1997). Qualitative research enables the researcher to immerse

themselves in the human or lived experience (Magilvy & Thomas, 2009). Sharing the

perceptions and lived experiences of the critical care nurse can provide a deeper understanding of

those experiences providing the researcher with the enriched and open outlook of the subject

being studied (Magilvy & Thomas, 2009). Knowing and learning about the phenomena dying

with dignity can provide the researcher with a deeper understanding of the dying process for the

critical care nurses. Qualitative research has a direct relationship with natural inquiry, searching

for the meaning or perceptions in a natural setting while enhancing his or hers understanding of

those experiences (Cooper, Endacott, & Chapman, 2009). The naturalistic setting can be defined

as the critical care setting that plays a major role in the phenomena itself (Chamberlin, 2009).

Through a phenomenological approach, the lived experience of the critical care nurse can be

conducted in that natural setting.

31
 The descriptive phenomenological research design, using an interview process was

selected for this qualitative research process. The word phenomenology is a Greek origin and

means “to bring into light” encouraging researchers to look beyond the initial appearances

(Fleming, Gaidys, & Robb, 2003). Phenomenology views the human experience with the

meanings attributed to those experiences (Cooper, Endacott, & Chapman, 2009).

Phenomenology provides a means of generating knowledge in nursing research (Moi &

Gjengedal, 2008). Using a descriptive phenomenological research design will give the

researcher the opportunity to describe and understand the participants lived experiences (Tuohy,

Cooney, Dowling, Murphy, & Sixsmith, 2013) in other words interpret the lived experiences of

the critical care nurse and the dying process in the critical care setting.

The interview process assisted the researcher in generating data that can be methodically

analyzed for themes and patterns, searching for the meanings of the experience being

investigated (Cooper, Endacott, & Chapman, 2009). Interviewing a critical care nurse allows the

researcher to connect with the nurse sharing his or hers story (Donalek, 2005). This story sharing

is considered a gift and this gift must be respected and used to benefit others from as that story

continues to evolve (Donalek, 2005).

Using a descriptive phenomenological research design brings a better understanding of

the perceptions and lived experiences of the critical care nurse caring for the dying patient. An

example of phenomenological study studying the intensive care nurses’ experiences caring for

the dying patient was conducted in 2013. King & Thomas asked 14 critical care nurses to

describe their experiences while caring for the dying patient. A theme emerged from the study

32
and was titled “Promises to keep” (King & Thomas, 2013). Five subthemes emerged from this

study

 Promise to be truthful

 Promise to provide comfort

 Promise to be an advocate

 Promises that could not be kept

 Promise to remain connected

This study provided the authors with an enriched picture of the lived experiences of the critical

care nurse caring for the dying patient. It was noted by the authors that the findings developed

from this study reflected well with Watson’s theories of transformational leadership and

postmodern nursing. The use of a descriptive phenomenological study exploring the lived

experiences and perceptions of the critical care nurse provides an excellent tool and support the

research design of this study.

Another example of the significance of using a phenomenological research design was

illustrated in a study conducted in 2014. Arbour & Wiegand conducted a phenomenological

study seeking answers to the roles of the critical care nurse while caring for the dying patient. A

series of interviews were conducted with 19 critical care nurses (Arbour & Wiegand, 2014).

Several categories evolved from this study including educating the family, advocating for the

patient, encouraging and supporting family presence, managing symptoms, protecting families,

and creating positive memories (Arbour & Wiegand, 2014). The critical care nurses also noted

the importance of educating the novice nurse entering into the critical care unit and caring for the

dying patient. The interviews started with a question about the critical care nurses lived

33
experience of caring for the dying patient and then expanded using exploratory questions to

broaden the topic of the dying patient. This phenomenological study also supports the use of this

research design in this study with the use of an interview process seeking answers to the research

question developed for the study.

The interviews are conducted with a series of questions but new questions can be

generated, depending on the experiences and answers given by the participant. These newly

generated questions come from the “in the moment experiences” and provides a better

understanding of each experience lived by the participant (Turner, 2010). This also can be called

an informal conversational interview conducted in a casual setting allowing the researcher and

participant to relax and share those experiences (Turner, 2010). Interviewing critical care nurses

allows those nurses to become co-researchers in this process (Donalek, 2004). The migration of

the researcher and the co-researchers provided a deeper experience of the dying process as it is

lived in the critical care setting.

Research using Watson’s Theory of Human Caring

Watson’s Theory of Human Caring has been selected for this research study. Watson’s

Theory of Human Caring has made a difference in nursing practice (Watson, 2002). Nursing

theory guided practices has provided positive outcomes for health care organizations

implementing this process. The patients noted positive emotional support and spiritual outcomes

in these organizations. Nurses also noted positive outcomes such as a sense of accomplishments,

self-satisfaction, and fulfilment. The caring theory empowers nurses to make a difference in the

patients in their charge. One of the goals of nursing is to help others, holistically caring for the

34
mind, body, and spirit with a focus on autonomy and enabling each patient make choices freely

(Watson, 1988).

The perceptions and lived experiences of the critical care nurse vary and each perception

will bring something different to the meaning of dying with dignity in the CCU. The purpose of

this descriptive phenomenological study is to explore critical care nurses lived experiences of

caring for the dying patient in CCU. Different cultures, level of control, attitudes toward death,

and personal preferences will have to be considered as the definition of dying with dignity is

explored (Wilson & Jacobson, 1990). Caring is an integral of nursing and that caring must be

included in the dying process. Using Watson’s Theory of Human Caring as the theoretical

framework for this study provides a central focus for caring and dying with dignity.

Multiple studies have been conducted with the inclusion of Watson’s Theory of Human

Caring (Ozan, Okumus, & Lash, 2015; Lukose, 2011; Smith, 2004; Watson, 2009). An example

of an extensive study conducted in 2008 researched the relationship of caring and the palliative

care nurse providing end-of-life care (Oburo, 2008). The research questions proposed for

Oburo’s study focused on caring as it relates to the palliative care nurse and how those nurses

describe acts of caring. The result of this study focused on practice, management, and education.

The practice component of this study resulted with issues such as lack of adequate time to be at

the bedside, not enough voice in this practice area, and limited support from the manager. Caring

was considered an important aspect for the dying patient but the staff was frustrated with the

elements mentioned previously. Without adequate time at the bedside, caring could not be

performed in a manner each nurse felt that care should be. Caring was an essential component

for palliative care nurses and caring for the dying patient.

35
Gaps in Literature

Limited research has been conducted about the dying process in the CCU especially as it

relates to the perceptions and lived experiences of critical care nurses. As the population ages

and health care, as well as technology continue to evolve, death in the CCU is becoming a reality

nurses need to address. In many cases, death in the CCU is perceived as a failure and

understanding critical care nurses lived experience of caring for the dying patient is an area that

is not well understood (Beckstrand, Lynn and Kirchhoff, 2006). When the decision is made to

move from a curative model of care to a palliative model of care, nurses’ attitudes and

perceptions have not been explored in the literature based on the reality of practice. This study

intends to address this gap by asking the critical care nurses to share their lived experiences of

caring for the dying patient in CCU to explore the essence, and meaning of dying with dignity in

a critical care setting.

The process of dying is unique to as it relates to the dying process and family. When

pain, suffering, and emotions are a part of that dying process the stressors are increased for

everyone involved in that death. Wilson and Jacobson (1990) noted the increased frustrations

critical care nurses were enduring as the level of illnesses and the acuity of the patients admitted

into the critical care unit continued to rise. This level of frustration then draws an interesting

question “Are critical care nurses prepared for this increased acuity as it relates to the dying

process and the end-of-life care necessary to provide a dignified death?” (Critical Care Medicine,

2004). As the population continues to age, the stressors placed on the critical care nurse will

continue to rise in the critical care setting (Critical Care Medicine, 2004). This aging population

continues to grow in the United States. It has been predicted that by the year 2030, the

36
population in the United States will consist of 70 million people 65 years or older

(Administration on Aging, 2006).

As the life cycle evolves so does the process of dying with approximately 2.5 million

deaths recorded in the United States in 2011 (End of Life Nursing Education Consortium, 2012).

One million of these deaths occurred in the critical care setting (End of Life Nursing Education

Consortium, 2012). As the population continues to age so will the number of deaths in the

critical care setting. As technology continues to improve in the CCU, prolonging life will

continue. This impact has both positive and negative connotations. On the positive side,

sustaining the life of a patient that will continue to have a good quality of life is important but on

the negative side, what if that quality of life is not preserved or death is going to happen

regardless of those highly technological capabilities. The importance of providing essential end-

of-life care cannot be overstated. It is this end-of-life care that impacts the critical care nurse and

the decision making processes those nurses must endure in the critical care unit (Bloomer, Cross,

& Moss, 2010). Lack of data, focusing on the critical care nurse, death and dying in the critical

care unit, and the increased stressors surrounding those deaths require further investigation with

extensive research, targeting these problem statements.

Summary

Chapter 2 provides an overview of the literature related to dying with dignity in a CCU.

In addition, literature supporting the use of Watson's theory of caring as the framework for this

study and the use of a descriptive phenomenological research design provides a means to

contribute to the nursing profession. Several data bases were searched and multiple peer

reviewed articles were discussed to support this study. Several areas were covered in this chapter

including the dying patient, dying with dignity, the critical care nurse, aging population,

37
phenomenological research design, Watson’s Theory of Human Caring, and gaps in literature.

One of the goals of the critical care unit is to reduce morbidity and mortality associated with the

major illnesses and restore health (Cook & Rocker, 2014). Yet it has been estimated that one in

five deaths occur in the critical care unit. The technology found in the current critical care units

provide many lifesaving processes but as important as preserving life is sometimes death carries

as much importance. Several studies have been conducted in recent years, focusing on different

perspectives of the dying with dignity but only a few studies concentrate on the process of dying

with dignity within the context of a CCU. Numerous themes have emerged from these limited

studies but many of these themes do not seem to be connected. Attempting to understand the

process of dying with dignity in the critical care setting requires further studies to bring themes

into focus with one another, searching for a solid base for caring for that dying patient.

Conclusion

The prospects of more research related to this study could generate more questions and

spawn future research interests. In a study conducted in 2005, Levy, Ely, Payne, & Engelberg

using a Quality of Dying and Death (QODD) instrument compared the perceptions of nurses,

resident physicians, attending physicians, and family members toward the quality of dying and

death in the critical care setting. The study illustrated significant differences in the perceptions

among each participant of this study. QODD ratings were significantly lower for residents and

nurses compared to physicians and family members. The authors of this research study suggest

the lower ratings could be related to the different times a resident and nurse spend at the bedside

observing pain and distress a patient may be having during that time of observation. This time

spent at the bedside may be much more than the other participants rated in this study. The

differences in the rating system used for this study noted “observed differences” and perceived

38
differences” (Levy, Ely, Payne, & Engelberg, 2005). The observed differences is defined as the

time spent witnessing events related to the dying patient while the perceived differences reflects

the prior experiences with death, level of training, and relationship with the patient. It is

important to gain a better understanding of these perceptions of the dying process that can

provide clearer picture of the goals necessary to build a plan of care for the dying patient (Levy,

Ely, Payne, & Engelberg, 2005). Questions remain and need to be answered to ensure the critical

care patient can die with dignity in the critical care setting.

Each of these topics supports the purpose for this study. The dying patient is a complex

entity and is different for every person and families involved in the end-of-life of issues. The

complexity of dying makes defining a death in a dignified manner challenging to say the least.

Dying with dignity has multiple, limited definitions but few are directed toward the critical care

setting. This lack of new information about dying with dignity in the CCU is the motivation for

this study. The critical care nurse is a specialized, licensed nurse working with the sickest of the

sick patients admitted into the CCU. The level of care becomes even more complex when the age

of the patients continues to grow older. The aging population and increased complexity increases

the stress levels of the critical care for multiple reasons.

A descriptive phenomenological research design was used for this study. It is an

important process in the development of theories and theoretical models. Watson’s Theory of

Human Caring is the conceptual framework chosen for this study. This model provides themes

that identify stages of dying and how to deal with these stages from a patient and family

prospective. Lastly, the gaps in literature were covered. Information is available but limited and

no clear and concise definition for dying with dignity could be located. Several research studies

39
noted a need for further research and development for the clear and concise definition. Chapter 3

provides a detailed description of the research methodology and design for this study.

40
 Chapter 3

Research Method and Design

Death and dying with dignity is a difficult process to understand and its meaning may be

different for those attempting to comprehend this process. Understanding dying with dignity,

especially in the critical care unit (CCU) is no different and the lack of a clear, concise,

understanding of this process is the identified problem for this study. The population continues to

age and this aging population will only contribute to an ever increasing problem in the CCU,

dying in a dignified manner. The purpose of this descriptive phenomenological study was to

explore critical care nurses lived experiences of caring for the dying patient in CCU. This

qualitative study was conducted using a descriptive phenomenological research design. The

descriptive phenomenological research design consisted of interviews inviting critical care

nurses to describe their perceptions and lived experiences of dying and dying with dignity in a

critical care environment. This interview process explored how nurses ‘think’ about the concept

and describe their ideas.

Searching for the answers to the research question requires diligence and a systematic use

of a research method and design. Choosing the correct research method depends on the type of

answer sought. Currently, the two most common research paradigms include: quantitative and

qualitative. These two methods refer to data that can be counted, numeric, narrative, or

categorical (Blegan, 2009). Data collected using a quantitative method will produce numerical

values and a qualitative method will produce words or meanings through experiences or actions

of others. This brief definition of each research method was expanded on as this paper evolved,

determining which method will provide the answer or answers to the research question.

41
 The research question for this study was developed in the naturalistic setting of the CCU

and seeks the perceptions of the critical care nurses, who care for the dying patient. A descriptive

phenomenological research design was used to explore perceptions of the bedside nurses caring

for dying patients in critical care settings. Technology and advances in health care have extended

the lives of the critical care patient but that extended life is not always perceived as a good thing.

When that life cannot be extended, the critical care nurse may view it as a failure, especially

when the care moves from curative to palliative (Morgan, 2008). If that death is considered a

failure, what are some of the possible reasons a nurse would feel this way.

Quantitative or Qualitative Research Method

The basis of a research method is centered around the answers to three questions (Guba,

1990)

1. Ontology- what is the nature of knowledge or reality?

2. Epistemology- what is the relationship between the researcher and knowledge?

3. Methodology- how should the inquirer go about finding out knowledge?

Knowledge is considered relative and the discovery of new knowledge can best be understood as

the creation of an interaction between the researcher and the researched (Guba, 1990). The

choice of research methods, in particular, nursing research methods must fit the needs of the

researcher and the research question being asked. Quantitative research deductively tests theories

from existing knowledge, developing hypothesized relationships, and outcomes in a study (Carr,

1997). Qualitative research is a “way of knowing and learning” through the different experiences

and perspectives of an individual (Vishnevsky & Beanlands, 2004). Determining which research

42
method will work best for any researcher again is based on the new knowledge sought and the

research question that has been asked.

Answering the Research Method Questions

Answering each question will provide the researcher with the most appropriate research

method to meet the needs of the question being asked. Returning to the three questions noted

previously:

1. What is the nature of knowledge or reality?

2. What is the relationship between the researcher and knowledge?

3. How should the inquirer go about finding out knowledge?

Each of these questions assisted the researcher in choosing the correct research method related to

the research question being studied. A highly technological level of knowledge exists in the

critical care setting but the process of dying in that environment lacks clarity and requires further

investigation. As the primary investigator and critical care nurse for this study it provides a direct

relationship with the research question and knowledge of the critical care environment. The

research question asks about perceptions and lived experiences of the critical care nurse

regarding the concept of the dying patient and seeking answers that can only be discovered by

asking those critical care nurses (Connelly, 2015). This discovery process can be conducted

through a literature search and interview process.

A qualitative research method provides a means of exploring, collecting open-ended,

emerging data based on multiple themes or processes (Campbell, 2014). Topics chosen for a

qualitative research method are usually new or have little to no previous data collected for that

topic. This research process can be conducted in the naturalistic setting, using multiple methods

43
to collect data. Using a qualitative research method provided a process to explore the perceptions

and lived experiences of the critical care nurse and the critically ill patient dying with dignity in

the CCU. The qualitative research method provided an excellent tool for conducting the research

for this study.

There are several research designs that could be used by the researcher such as grounded

theory, ethnography, and phenomenology. A grounded theory research method is an approach to

clinical analysis that could lead to the development of a theory (Chiovitti & Piran, 2003). There

are two types of theories that can be developed from a grounded theory approach; formal and

substantive (McCann & Clark, 2003). A formal theory developed from a grounded theory

approach is usually more general and focus on the conceptual of inquiry. A substantive theory,

which is the most common theory developed from a grounded theory approach, and focus on the

social practices and are developed for narrower empirical areas of study. An ethnography

research method provides a process to describe cultural behaviors (Cruz & Higginbottom,

(2013). Ethnography process uses three data collection processes: participant observation,

formal and informal interviews, and examination of documents. The use of these strategies

provides the researcher with a process of gaining a clearer understanding of the cultural being

studied.

Phenomenology is considered a philosophy and a research method and is a widely used

research method in nursing (Tuohy et al., 2013). Hermeneutic and descriptive phenomenology is

two research methods used in nursing research. Hermeneutic phenomenology is also called

interpretive phenomenology. This focal methodology can be used to interpret the meaning found

in a particular phenomenon (Sloan, & Bowe, 2014). The focus is the understanding of the

meaning of the experience, searching for themes, and engaging with the data interpretively with

44
a decreased emphasis on the essences of the data collected. This is a primary difference in

comparison of a descriptive phenomenological research method. Hermeneutic is considered a

more complex research method. Descriptive phenomenology brackets off the influences around

the phenomena being investigated.

Descriptive phenomenology can used to describe, understand, and interpret the critical

care nurses lived experiences. Van Kaam (1966) addresses the experience of a phenomenon by

asking two questions

 Does this concrete, colorful, formulation by the subject contain a moment of experience

that might be a necessary and sufficient constituent of the experience of really feeling

understood?

 If so, it is possible to abstract this moment of experience and to label the abstraction

briefly and precisely without violating the formulation presented by the subject?

The answers to these questions should be considered “necessary constituents” providing a

synthetic description of the experience or the end product (Van Kaam, 1966).

The researcher using descriptive phenomenology must be able to identify and understand

the participant’s realities which may be influenced by the world in which they live. These

realities or experiences may be predisposed to the social, cultural, and political environment and

these factors should be avoided by the research if possible (Flood, 2010).

A descriptive phenomenological research design was selected for this study. This

qualitative research method provided the tools and essence needed to seek out the perceptions of

the critical care nurse based on their experiences of caring for the dying patient in the CCU.

45
Research Problem

The act of dying cannot be changed, making death inevitable. What has changed is the

longevity of the human population in the United States. Contributing to this longevity is the

technological advances made across the health care systems, increased preventative measures,

and many other advances making the average life 78-80 years-of-age (Centers of Disease

Control and Prevention, 2014). The technological advances in the critical care setting have also

been a contributor of life saving measures. One problem created by these technological advances

the overuse of this technology and not allowing death to occur naturally. Overuse of this

technology brings to question “are these patients being allowed to die in a dignified manner?”

While this is only one of the potential barriers to a dignified death, it is an important one. What is

a dignified death and how do critical care nurses’ perceive the phenomena? Therefore, the

general problem which was the focus of this study is the lack of a clear and concise

understanding of dying in a dignified manner, especially in the critical care setting. More

specifically the problem being addressed by this study focused on the thoughts and experiences

of the critical care nurses caring for the dying patients in the CCU.

Research Purpose

The purpose of this descriptive phenomenological study was to explore critical care

nurses lived experiences of caring for the dying patient in CCU. Understanding the process of

dying and dying with dignity is difficult and may not be completely understood by everyone. A

person’s culture, level of control, attitude toward death, and personal preferences must be

considered as factors for defining a dignified death (Wilson & Jacobson, 1990). This study

46
explored the relevant literature and interview critical care nurses seeking their thoughts,

perceptions, and lived experiences of dying with dignity in the critical care setting.

Research Method and Design Plan

This study was conducted using a descriptive phenomenological research design. This

research method provided the tools needed to seek out the perceptions of the critical care nurse

and dying with dignity in the CCU. In-depth interviews of critical care nurses were conducted,

exploring the perceptions and lived experiences of each nurse as it relates to dying with dignity

in the CCU. The goal of this interview process was to allow nurses to tell their story and share

their thoughts about the dying process and dying with dignity in the CCU. The data collected

from these interviews was analyzed and coded allowing themes to emerge from this interview

process.

The descriptive phenomenological research design was utilized to answer the following

research question which was carefully developed providing boundaries for the study and the

problem identified for this study (Koro-Ljungberg & Hayes, 2010). Building a clear and concise

research question could ensure the qualitative study is manageable. The research question

guiding this study was:

Research Question: How do critical care nurses describe their lived experience of caring for the

dying patient?

Perceptions and lived experiences can best be understood using a descriptive

phenomenological research method. Seeking new or revised answers through the exploration of

the perceptions and lived experiences of the critical care nurse using a qualitative research

method provided the researcher with a means of knowing and learning about that experience

47
(Bailey, 1997). Qualitative research enables the researcher to immerse themselves in the human

experience (Magilvy & Thomas, 2009). Sharing the perceptions and lived experiences of the

critical care nurse can provide a deeper understanding of those experiences providing the

researcher with the enriched and open outlook of the subject being studied. Knowing and

learning about the phenomena dying with dignity can provide the researcher with a deeper

understanding of the dying process for the critical care nurses. Qualitative research has a direct

relationship with natural inquiry, searching for the meaning of the perceptions and lived

experiences of the critical care nurse in a natural setting while enhancing his or hers

understanding of those perceptions and lived experiences (Cooper, Endacott, & Chapman, 2009).

The naturalistic setting can be defined as the critical care setting that plays a major role in the

phenomena itself (Chamberlin, 2009). The research method selected for this study was a

descriptive phenomenological research design.

Phenomenological Research Design

The descriptive phenomenological research design, using an interview process was

selected for this qualitative research process. The word phenomenology is a Greek origin and

means “to bring into light” encouraging researchers to look beyond the initial appearances

(Fleming, Gaidys, & Robb, 2003). Phenomenology views the human experience with the

meanings attributed to those experiences (Cooper, Endacott, & Chapman, 2009).

Phenomenology provides a means of generating knowledge in nursing research (Moi &

Gjengedal, 2008). Using a descriptive phenomenological research design gives the researcher

the opportunity to share those lived experiences of caring for the dying patient in CCU to explore

the essence, and meaning of dying with dignity in a critical care setting.

48
Interview Process

The interview process assisted the researcher with generating data that can be

methodically analyzed for themes and patterns, searching for the meaning of the experience

being investigated (Cooper, Endacott, & Chapman, 2009). Interviewing a critical care nurse

allows the researcher to connect with the nurse sharing his or hers story (Donalek, 2005). This

story sharing is considered a gift and this gift must be respected and used to benefit others from

as that story continues to evolve (Donalek, 2005).

This study included interviews with 12 critical care nurses when data saturation was

achieved. The purpose of the interviews was to seek and capture the essence, perceptions, and

lived experiences of caring for the dying patient in the CCU and dying with dignity. The

interview process assisted the researcher in generating data that was methodically analyzed for

themes and patterns, searching for the meanings of the critical care nurse’s perceptions being

investigated (Cooper, Endacott, & Chapman, 2009). Interviewing a critical care nurse allowed

the researcher to connect with the nurse sharing his or hers story. This story sharing is considered

a gift and this gift was respected and used to benefit others as that story continues to evolve

(Donalek, 2005).

Interview Guide

The interview guide (Appendix B) was developed from the literature reviewed in chapter

two. The interview guide consists of a series of questions tested for usefulness and consistency.

The interview guide was evaluated using a pilot sample to determine if the questions elicited the

data needed to answer the research question. Additional probing questions were added as needed

for clarification and to encourage the participant to expand on their thoughts and experiences.

49
These newly generated questions came from the “in the moment experiences” and provided a

better understanding of each experience lived by the participant (Turner, 2010). This process is

referred to as an informal conversational interview conducted in a casual setting allowing the

researcher and participant to relax and share those experiences (Turner, 2010). Interviewing

critical care nurses allowed those nurses to become co-researchers in this process (Donalek,

2004). The migration of the researcher and the co-researchers provided a deeper experience of

the dying process as it is lived in the critical care setting.

Population

As noted previously, the population of the research consisted of critical care nurses

working in the Midwestern region and belonging to the AACN. The population has a vast array

of experience and years of service in the critical care setting. The purpose of this descriptive

phenomenological study was to explore critical care nurses lived experiences of caring for the

dying patient in CCU. Using the AACN provided a recruiting base for accessing critical care

nurses in the Midwestern region and provides the resources needed to answer this question. As

the primary researcher and a critical care nurse, having an understanding of the critical care

population and the environment under investigation is important (Gibbs et al., 2007).

Sampling Method

The convenience sampling method was chosen for this research study. A convenience

sample is described as a potential source of participants easily accessible to the researcher

(Marczyk, DeMatteo, & Festinger, 2005). The research participants were identified from the

membership email data-base of the local chapters of the American Association of Critical Care

Nurses (AACN) located in Midwest. Membership to the AACN allows access to all local

50
chapters in these areas. Access was obtained through the AACN website, AACN.org. Members

of these chapters are all critical care nurses with multiple years of experience and educational

backgrounds. The initial contact with prospective interviewees was conducted through each

AACN chapters email address. Prospective interviewees were given the researchers contact

information which included three sources of contact: email address, mailing address, and phone

number. A sample of 12 critical care nurses was interviewed using the interview guide. Small

sample sizes are usually used in a phenomenology (Connelly, 2010). Smaller sample sizes can be

purposeful and meaningful providing the researcher and research participant time for a more in-

depth interview. Recruiting and interviewing participants continued until data saturation was

achieved. Data saturation is the point where no new information can be gathered with additional

interviews.

Data Collection

Data collection involved digital, audio recording of each interview as well as field notes

documented immediately following each interview describing the context of the interview such

as participant’s reactions, emotions, and demeanor during the interview. Limiting any

distractions that may be taking place during each interview allowed the researcher and

participant to concentrate on the task at hand (Fernandez & Griffiths, 2007). Interviewing the

critical care nurse provided the researcher with a better understanding of the perceptions of

critical care nurse and dying in the critical care setting.

Informed Consent

Maintaining participant confidentiality is an important aspect to any qualitative research

study but this does not come without challenges (Kaiser, 2009). The convention of

51
confidentiality was upheld in the research study. This process was used to protect the participant

from any harm. All confidentiality matters were addressed prior to the interview process. The

informed consent was submitted to the IRB for approval. The informed consent required two

changes before approval was obtained. The approved informed consent was discussed, looking at

all aspects of the consent and the importance of confidentiality and the protection of each

participant’s identity and any information collected from them. After the data was collected,

identifiers were coded and then removed from the transcriptions. Particular perceptions or stories

could also identify the participant. If this is the case, any perceptions or stories, without changing

the significance of the data, were modified to reduce the risk of that identity. Lastly, all data

transcriptions and digital recordings are secured in a locked box within a local bank used by the

primary researcher. This material will be stored for three years and then destroyed using a

service called Secureshred. Secureshred is a division of Opportunity Enterprises (Secureshred,

nd). This company is used by the majority of healthcare organizations in Northwest Indiana and

provides multiple means of data destruction.

An informed consent (Appendix A) was given to each participant to read prior to the

interview and ample time was allocated allowing each participant to ask questions and receive

answers. All of the selected research participant’s questions were answered and each signed the

corresponding informed consent. The informed consent is a vital part of all research that includes

human subjects (Byrne, 2001). The rights of all humans must be protected. Conducting a

qualitative interview, which explores the perceptions and lived experiences of the critical care

nurse requires the investigation of those personal perceptions, which could be considered a

violation of his or hers privacy (Byrne, 2001). The study participants had adequate time to ask

questions, ensuring a full understanding of the research process before being asked to sign the

52
informed consent form. Each study participant agreed to be interviewed. Two copies of the

informed consent were provided to each research participant for their signature agreeing to be

interviewed. One copy will be given to the study participant and the other was retained by the

researcher in a locked file for three years. No study participants choose to withdraw from the

interview process. IRB approval of the data collection process, informed consent, and the

research method used to protect the data collected was obtained prior to the interview process. A

copy of the informed consent is included in Appendix A.

Each study participant was assigned a code prior to the interview. The codes assigned to

each research participant were DWD # 1, DWD # 2 and so forth. Demographics were obtained

from each study participant, which included gender of each participant, age range, years of

experience in the critical care, and highest degree of education. Other than the informed consent,

all other materials including the digital recordings were identified by the assigned code. Only the

researcher has access to the identity of the participants. Any dissemination of the researcher

findings was in aggregate form and the identity of the study participants was protected.

Location of the Interviews

The location of the each interview was conducted in a private, quiet area with little or no

risk of interruption or disruption. A local library was used for this interview process. A

University of Phoenix PRN was obtained prior to the interview process and permission was

given to use the library. This library had quiet rooms and was scheduled in one to six hour

blocks. This type of location allowed the in- depth interview to become a personal encounter.

The interviewer and study participant were able to bond and share this experience along with

being able to learn and listen without fear of interruption (Dicicco-Bloom, & Crabtree, 2006).

53
The interview questions used in this semi-structured interview were then presented to each study

participant with ample time being provided to answer and share their perceptions of each

question being asked. Each interview was digitally, audio recorded, capturing the interview as it

presents itself. Field notes were used to document any changes in the demeanor of the

participant, overall level of comfort, and how the participants was presenting his or hers self.

Interview Process

A pilot study was used to assess the interview guide and the research protocol. The

interviews were conducted in a private setting, using digital recording and transcription during

each interview. This seclusion ensured privacy and allowed time to conduct each interview

without adding any distractions to the interview process.

The interviews were semi-structured. Semi-structured interviews are one of the most

commonly used interview processes used in qualitative research (Holloway & Weaver, 2010).

The researcher used predetermined questions and asked for clarification of each question as the

interview proceeded (Doody & Noonan, 2013). This allowed the researcher flexibility while

asking the open-ended questions and provided an opportunity to explore any issues that arose

during the interview. Additional questions were asked during the interview process. The

questions varied depending on the direction the interviewee was taking while answering initial

interview questions. The openness of the semi-structured interview provided a means for the

interviewer to explore new concepts that emerged during the interviews, which enabled the

researcher to increase the validity of the study and enriching the data that was collected.

The purpose of this descriptive phenomenological study was to explore critical care

nurses lived experiences of caring for the dying patient in CCU. The data collection for this

54
study was conducted using an interview process. Using an interview process to collect data was

integral to the research method used for this study (Englander, 2012). The interview process was

an excellent research tool and has been used over the years by many qualitative researchers.

While this data collection process is only one means of collecting data it provided ample

information for this study.

Careful planning of the semi-structured interview was necessary in order to ensure a

successful interview. The interview questions were designed around the research question being

asked and it was clear, concise, and neutral in nature (Doody & Noonan, 2013). These open-

ended questions were based on experience, opinions, feelings, knowledge, and include

demographics and background details. The interview started with the simpler questions and

progress toward the more difficult and sensitive questions as the interview moved forward. It

was important to be a good listener, holding back any comments or questions until the participant

has completed their thoughts and answer (Adams, 2010). It was also important to note any

emotions, change in behaviors, and reactions the participant may have had during the interview.

These changes were included with the transcription of the interview which in turn added validity

to the process.

A pilot study was conducted interviewing two critical care nurses who met the study’s

criteria for inclusion. The pilot sample was recruited from a pool of critical care nurses known to

the researcher. The pilot study provided a time to practice the questions that were used for the

interview guide and gave the researcher an opportunity to make changes to the questions as

needed. The pilot study tested the research protocol including the questions, informed consent,

space used for the interviews, timeframe, and use of the digital recorder used in the interviews.

No changes were made to the interview process after the pilot study was conducted. It also

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provided the researcher an opportunity to practice asking the questions thus enhancing the

interview process (Doody & Noonan, 2013). Preparation for the actual interview included the

pilot study which was integral in the preparation process.

Pilot Study: Interview Questions

A pilot study for this study was conducted after the approval of the University of Phoenix

Institutional Review Board. The pilot study was used to collect data from a sample of two

critical care nurses. These critical care nurses using the criteria set for the actual study. Each was

a member of AACN, Midwestern region. The pilot study intended to test the interview style,

interview process for clarity, and to ascertain if the questions elicit appropriate and effective

information (Seidman, 2012). The pilot study also provided an opportunity to assess the protocol

developed for the interview process. After approval from the Institution Review Board of the

University of Phoenix, the pilot study was conducted for this study. The pilot study provided

data that was collected from two subjects who met the sampling criteria. The purpose of the

pilot study was to help the researcher discover any issues affecting recruitment, adjust interview

style, or determine the effectiveness of the guiding interview questions (Seidman, 2012).

Furthermore, according to Morse, Barret, and Mayan (2008), the pilot study added rigor to

qualitative research. Results of the pilot study were carefully analyzed and were reflected in the

design for the study. Following each pilot interview, the researcher debriefed with the research

participant asking for feedback regarding the interview guide and the research protocol. Data

collected during the pilot study was analyzed to determine that it does indeed provide insight into

the research question for the study.

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 Based on feedback from the pilot sample, the interview questions were reviewed. The

interview guide was finalized for use in the research study. The interview guide ensured

consistency with each interview and participant. Pilot study participants were also asked for

feedback on the interview process including the researcher’s techniques and the protocol

developed for the study. Turner (2010) provided eight steps necessary for a successful interview

1. choose a setting with little distraction

2. explain the purpose of the interview

3. address terms of confidentiality

4. explain the format of the interview

5. indicate how long the interview usually takes

6. tell them how to get in touch with you later if they want to

7. ask them if they have any questions before you both get started with the interview

8. don't count on your memory to recall their answers

As the interview progressed it was important to pay attention to the participant acknowledging

each answer or experience (Turner, 2010). Other themes developed during the interview and

those themes were further explored. The interviewer deemed those themes significant to the

research question for the study. The primary researcher was also an instrument used on all levels

of a research project. Using a qualitative research method, the researcher was positioned rather

closely to the raw data and perceptions of the participant (Brodsky, 2008). Sharing the

perceptions and lived experiences of each participant provided the researcher with a better

understanding of those perceptions and the analysis of that data. Rodgers (Personal

communication, Rodgers, 2015) suggested that the interview data describes how critical care

nurses think about the concept of dying with dignity in critical care units. The description of the

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ideas of critical care nurses contributed to enhancing the understanding of the phenomena of

dying and dying with dignity in the critical care unit. Transcription of the interviews was

conducted by the primary researcher.

Analyzing the Data

The data collected from the interviews, recorded and written provided a descriptive

account of the perceptions of the critical care nurse. Each interview was transcribed by the

primary researcher, verbatim noting any written notes included during each interview. As the

sole researcher, these interviews become shared stories and experiences and these experiences

become a resource adding strength to the data collected (Hollaway, 2011). A descriptive

phenomenological analysis process developed by Colaizzi in 1978 was used for the data analysis.

This data analysis process was developed to be used in nursing research (Shosha, 2012).

Colaizzi’s data analysis process uses seven steps to analyze semi-structured interviews. The

seven steps are

 Each transcript should be read and reread to gain a complete understanding of each

transcript

 Transcript – identifying significant statements and phases

 Formulated Meaning – aggregation of the formulated meanings

 Categories, clusters of themes, and themes – integrating all of the resulting ideas

 Exhaustive description of the phenomenon – reduction of the exhaustive description

 Fundamental structure – returning to the participants

 Validation of the exhaustive description and its fundamental structure

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Reading and rereading each transcript assisted the researcher in finding significant statements

and phases as the data was analyzed. These statements and themes were aggregated and

organized according to the context of each. The meaning of each statement and theme was

formulated into an exhaustive description. The meanings of each statement and theme were

grouped or clustered into categories. The redundant and misused data was then removed from the

data analysis process thus strengthening the remaining data.

Finally, the researcher returned to the study participants of the interview process to

ensure the meanings and interpretations of each theme had been correctly analyzed and

categorized in the assigned themes. This “member checking” technique validated the data

collected from each participant providing rigor to this study. This data analysis process provided

a systematic approach to the semi-structured interviews planned for this study. Using Colaizzi’s

data analysis process provided an exhaustive description of the data collected from each

interview and transcript which is an effective strategy for this study.

The data collected was based on what the study participant said in direct quotes while

searching for themes or sub-themes collected from the interviews. An open coding process

noting specific themes, short phrases, and topics was then documented and included with the

transcribed material (Burnard, Gill, Stewart, Treasure, & Chadwick, 2008).

Emerging themes and categories was noted during this process. This produced a long list

of themes and categories which required detailed overview to bring this list into a manageable

list. This coding process was implemented for each interview, eventually bringing this data in to

set of themes and categories. The data collected from the interview process was analyzed and

interrupted by the primary researcher. The data was manually sorted and organized, initially

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keeping the data from each phase separate. Once the themes were developed a comparison of

each data set was conducted. A compressed list was developed combining themes and categories

from each data set. The study participants were revisited to validate emerging themes and data

collected from his or hers interview. The interpretation of this descriptive phenomenological data

was based on the primary researchers own perceived opinions about the perceptions and lived

experiences of the critical care nurse, it remained data driven and suggested a valid method for

data analysis (Burnard et al, 2008).

Rigor of a Qualitative Study

Qualitative research methodology provided an appropriate method for clinical inquiry in

nursing practice (McBrien, 2008). Using a qualitative methodology leads to theory development

and advancement in clinical practice. Rigor is an important component of qualitative research

and this rigor is necessary in ensuring the empirical evidence developed from a study is valid and

reliable. One means of ensuring rigor or reliability was confirming the views of the primary

investigator are honest and consistent as it relates to the data collected in a qualitative study. This

can be done through repeating, summarizing, and paraphrasing the participant’s words.

Repeating the stated words of the participant also ensured the data collected was valid and

reliable. Peer debriefing also ensured the data collected is reliable. Co-investigators can detect

any bias or subjectivity by the primary investigator thus ensuring the data collected was valid

and reliable.

Triangulation is another popular and useful means of ensuring trustworthiness of the

findings. Triangulation involves the use of multiple methods to ensure the data collected was

valid (Shenton, 2004). The use of wide range of informants is another form of triangulation.

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Varied and diverse viewpoints, attitudes, and experiences enrich the data that was collected.

Utilizing informants from different organizations also ensured the validity of data. Field notes

served as an additional source of data for triangulation documenting the context of the interview

data.

Trustworthiness can best be established if the reader can follow the audit trial consisting

of the events of the study and the influences and actions of the researcher (Carcary, 2009). Five

criteria are necessary to develop trustworthiness. The five criteria are credibility, dependability,

confirmability, transferability, and authenticity (Guba & Lincoln, 1994). Credibility is built

upon the truth of the data collected and the participant’s point of view (Cope, 2014). Combining

the data being collected and the researchers own experiences verifying the findings of the

participant establish an even stronger credibility. It is important for the researcher to be engaged

in the research process. Credibility in qualitative research allows others to recognize the

experiences of the informants that are collected through the interpretation of the participants

experiences (Thomas & Magilvy, 2011). Achieving creditability requires examining the

representativeness of the data as a whole. A qualitative study is considered creditable when that

study represents an accurate description and interpretation of the human experience being shared

while others are able to recognize those shared perceptions. Strategies that establish creditability

are reflexivity, member checking, and peer examination. Credibility of qualitative research

depends on the efforts and ability of the researcher conducting that research. A reflexive journal

was maintained during this study to document decisions made regarding data collection and

analysis. Transcripts from the interviews conducted for this study were reviewed by the

individual research participant for accuracy as a form of member checking.

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 Dependability is established with the constancy of the data being verified through another

researcher. If the research findings can be replicated using similar processes the research is

considered dependable. Data was compared to previous research that studied the process of

dying and dying with dignity. Confirmability is established when the researcher can demonstrate

the participants responses are theirs alone and not the researchers. This can be done through the

description of how the conclusions and interruptions were established from the data collected

(Cope, 2014). Each theme established from the data collected should be described using quotes

collected from the participants recounting each theme. The transcribed data was identified as

either the participant or the interviewer in order to distinguish what was stated and who stated it.

Transferability is established through the application of the research findings to other settings or

groups. An example of transferability would be the transferring of data collected to other areas of

the nursing profession. If the readers of the research study not involved with that study can

associate that information with their own perceptions then the findings are transferable.

Transferability was established after the study is conducted. Authenticity is built through the

expression of the feelings and emotions of the researcher in an authentic manner. Reporting the

descriptive method used in a study allows the reader to grasp the experiences of the participant

being studied. The data collected from the interview process of this study will be thoughtfully

analyzed and reported using quotations to support the findings. Field notes were used to describe

any emotions observed, changes in behaviors, and expressions that may arise during the

interview process. The study was conducted carefully following the research protocol identified

to provide a foundation for the potential replication of the study in other settings.

An audit trial established significance in the research that was performed (Carcary, 2009).

Maintaining rigor in any research study while describing the methods used in the study and the

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decisions made during the study ensures that significance can be recognized by other researchers.

The reflexive journal serves as the audit trail for this study.

Conclusion

The purpose of this descriptive phenomenological study was to explore critical care

nurses lived experiences of caring for the dying patient in CCU. Developing an understanding of

phenomena of dying with dignity in the CCU could guide the care provided to the dying patient

while meeting the needs of that patient and family. The qualitative research method selected for

this study was a descriptive phenomenological research design. A series of interviews were

conducted, interviewing critical care nurses and asking about their perceptions and lived

experiences about caring for dying patients in the CCU. The goal was to develop a clear

understanding of the essence, lived experiences, and meaning of caring for the dying patient and

dying with dignity in a CCU and the reality of the practice described by the sample of critical

care nurses. A descriptive phenomenological research method was used to collect data from each

interview and used to investigate the perceptions and lived experience of the critical care nurse

caring about the dying patient. This naturalistic process provided the researcher with a means of

knowing and learning about dying in the CCU, through the eyes of the critical care nurse

providing that care. Knowing and learning was developed through an informal conversational

interview process asking questions established before the interview and new questions generated

from that informal interview. The data collected from this research study provides a better

understanding of the dying process through the perceptions of the critical care nurse. Chapter 4

presents the findings based on the pilot study and interviews conducted for this study.

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 Chapter 4

Research Findings

Data Review

Chapter Four presents the results of this study. The purpose of this descriptive

phenomenological study was to explore critical care nurses lived experiences of caring for the

dying patient in CCU. The participants of this study have had many experiences with death and

dying in the critical care setting. Based on the analysis of the in-depth interviews with the critical

care nurses, several themes emerged from the data. The interviews provided objective and

subjective data from each participant as it relates to death and dying in the critical care setting.

Adherence to the phenomenological process was maintained throughout the interview process.

The interview questions designed for this study were introduced to each participant and any

preconceived expectations or shared experiences were not a part of the given study. Each

participant was allowed to share their lived experiences of caring for the dying patient in the

critical care setting. Researcher bias and influences were removed from the interview process.

The interview guide developed for this study (Appendix B) included demographics of each

participant (Table 1).

A descriptive phenomenological analysis process developed by Colaizzi in 1978 was used for the

data analysis. Colaizzi’s data analysis process uses seven steps to analyze semi-structured

interviews. The seven steps are

• Each transcript should be read and reread to gain a complete understanding of each

transcript

• Transcript – identifying significant statements and phases

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• Formulated Meaning – aggregation of the formulated meanings

• Categories, clusters of themes, and themes – integrating all of the resulting ideas

• Exhaustive description of the phenomenon – reduction of the exhaustive description

• Fundamental structure – returning to the participants

• Validation of the exhaustive description and its fundamental structure

Each transcript was read and reread searching for significant statements and phases. These

statements and phases were organized according to the context of each and the themes developed

from this data were the base of this study.

Pilot Study

A pilot study was conducted using the interview guide to test the interview process. Two

critical care nurses were recruited for this pilot study. The informed consent was reviewed and

discussed with each study participant and a signature was obtained. Demographic data related to

age, gender, years of experience and level of education was obtained (Table 1) and the

interviews were conducted. The pilot study included testing the digital recorder used for this

study. Each interview lasted approximately 20 minutes. Each question from the interview guide

was introduced and probing questions were intertwined with the primary questions for clarity.

Post interview questions were asked of each participant in regards to the interview process,

consent, demographics, and the interview questions. Each participant provided positive feedback

about the procedure and concurred that the interview process was seamless and provided thought

provoking questions.

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 The digital recording was difficult to navigate initially but after review of the

instructions, video tutoring, and practice the recording process worked well during the

interviews. The results of the pilot study tested the consent and demographic paperwork as well

as providing the researcher with an opportunity to hone the skills necessary to “go live” with the

research study. No changes were made post pilot study and the experience provided a new level

of confidence moving forward.

Table 1: Pilot Study Demographics

Participant Age Range Years of Gender Highest

experience in the Educational
CCU Degree
DWDPS # 1 30-49 6-10 Female BSN

DWDPS # 2 50-59 20 or more Female BSN

Participant Recruitment

Study participant recruitment was completed using the email list acquired from the

American Association of Critical Care Nurses (AACN) webpage. The purpose of this descriptive

phenomenological study was to explore critical care nurses lived experiences of caring for the

dying patient in CCU. Using the AACN membership list provided a recruiting base for accessing

critical care nurses in the Midwestern region and an adequate sample to collect data to answer

the research question. The research participants were emailed or contacted directly depending on

location of employment. All of the study participants resided in a Midwest state. A total of 20

potential research participants were contacted and 15 accepted the invitation to participate in the

research study. Of the 15 accepting the invitation 12 of the study participants were scheduled and

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three provided tentative times and dates to conduct the interviews. The recruitment process was

seamless but scheduling dates and times was challenging. The interviews were scheduled over

two weeks with several scheduled in a single day. The interview process, while busy was

conducted without any problems and without any absences or reschedules.

Demographic Data

This research study was designed to recruit and interview fifteen critical care nurses or

until data saturation was achieved. Data saturation was reached after the first nine interviews and

three additional interviews were conducted to validate data saturation as well as strengthen and

support the data collected from each interview. Therefore, the total sample for the study included

12 participants (n=12). Table 2 below depicts the demographic data collected to describe the

sample.

The demographic data illustrates a varying set of age groups for the data collection

process. The majority of the study participants were 60 years of age or older (n=5 or 42%). The

remaining participants ages fell into three groups: 33% of the participants were age 50-59 (n=4),

17% of the participants reported being in the 20-29 age range, (n=2), and one participant, 8%

reported being in the 30-39 age range (n=1).

The majority of the study participants (75%) indicated that they had 20 or more years as

an experienced nurse (n=9). Two study participants (17%) reported 1-5 years (n=2) years of

experience and one study participant (8%) had 6-10 years of experience (n=1). 92% of the

participants were female (n=11) and 8% were male participants (n=1). The educational degrees

varied with the majority of the educational degrees (59% or n=7) were Bachelor of Science in

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Nursing (BSN), Masters of Science in Nursing (MSN) was 8% (n=1), MA/MS equaled 25%

(n=3), and PhD degrees in nursing totals 8% (n=1).

Table 2: Demographic Data

Participant Age Range Years of Gender Highest

experience in the Educational
CCU Degree
DWD # 1 50-59 20 or more Female BSN

DWD # 2 50-59 20 or more Female MS/MA

DWD # 3 60 or older 20 or more Female MS/MA

DWD # 4 60 or older 20 or more Female PhD

DWD # 5 30-39 6-10 Male BSN

DWD # 6 20-29 1-5 Female BSN

DWD # 7 50-59 20 or more Female MSN

DWD # 8 60 or older 20 or more Female BSN

DWD # 9 60 or older 20 or more Female BSN

DWD # 10 20-29 1-5 Female BSN

DWD # 11 50-59 20 or more Female MS/MA

DWD # 12 60 or older 20 or more Female BSN

Identified Themes

Using the interview guide, (Appendix B) open ended questions were asked consistently

during the data collection process with each participant. The data was transcribed verbatim from

the audio recordings of the interviews. Each transcript was read multiple times to identify

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common language and concepts to categorize the data. The commonalities across all of the

transcripts were identified as themes. The researcher met with each study participant of the

interview process to ensure the meanings and interpretations of each theme had been correctly

analyzed and categorized in the assigned themes. The themes identified from this study included

communication, family, technology, lack of education, and dying with dignity. Within each

theme, several subthemes were identified and described in detail with each theme.

Theme # 1: Communication

Multiple study participants noted the need for improved communication with the patient,

family, and the health care team. The stories shared noted that the lack of communication was

evident in more situations than could be remembered. This lack of communication was directed

primarily toward the physicians the majority of the time but it was noted that nursing did carry

some of that responsibility. The theme of communication is supported by the following

statements from participants. “(The physician should) be honest, provide a clear picture, and use

terms the patient and families will understand. If the futility of care is obvious then tell the truth”

(DWD # 5) “(The physician should) introduce code status early. Start in the emergency room if

possible. Make sure do not resuscitate (DNR) is understood especially when the outcomes will

not change regardless of the efforts and time spent caring for the patient.” (DWD # 6)

(Communication) starts with the patient and family. Discuss with the patient early if possible (in

the doctor’s office) and document that decision. If and when a traumatic illness takes place talk

to the family and make them aware of those wishes. And then make sure to give a clear and

concise picture of the illness and any possibilities of recovery. (DWD # 1) The theme of

communication was addressed by every participant in some form.

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Subthemes of Communication

Components of theme # 1 are as follows; family, nurses, and physicians. Communication or lack

of communication was included six of the research participants. As noted by (DWD # 1)

Family member, full arrest, hypothermia thermic therapy, giving her every chance but

she was brain dead (limited flow). The family wanted everything done, coded her 3

times, broke ribs. Patient died and the family was beside themselves and actually

threatened staff and said we killed there mom. Staff talked to family throughout the

process and asked what their mom would want, telling them this was not there mother but

they refused to listen.

“Families do not understand the suffering taking place or want to understand even when they

hear their loved one moaning and crying. DNR is not understood even with hospice being a part

of the conversation. Improved communication is needed.” (DWD # 2) Some nurses suggested

they were also reluctant and/or afraid to communicate with their patients and family members as

noted by seven of the study participants. Newer nurses according to five of the study participants

seem to have the most issues with talking about dying, code status, and end-of-life care. One

participant clearly suggested “Nurses sometimes feel they cannot have a conversation about

death due to fear of interfering with the plan of care. It needs to change” (DWD # 11). DWD #

11 also noted that “the younger nurse believes they can do everything and save lives so talking

about death is not comfortable for them.” Another example reinforcing this statements is “Some

younger nurses do not understand the do not resuscitate (DNR) order even with hospice being a

part of the conversation. Improved communication is needed” (DWD # 2).

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 Physicians were noted to have a difficult time with communication. While it was noted

that this was an improving process it clearly remained an issue when dealing with the dying

patient and their families. Participants suggested “Doctors are getting better with communication

(some of them) but it is still evolving. Communication about end-of-life issues is still a difficult

process for many of them.” (DWD # 2), “All of us need more education with dying with dignity

especially approaching and communicating with patients and families. (DWD # 5), “Critical

patient admitted to the critical care unit. Extremely ill and care appeared to be futile. Why didn’t

the doctor talk to the patient first? Lack of communication” (DWD # 7), and “Doctors need to be

involved but many refuse to discuss or even consider changing the code status, even refuse to

discuss hospice or palliative care” (DWD # 1).

Theme # 2: Family

Family resistance and unwillingness to stop or limit the level of care provided for their

loved one was very evident as most of the study participants concurred with this topic. The

reasons noted for this resistance was concerning and difficult to understand by most of the

nurses. This family resistance is evident as each of these study participants noted. “Patient driven

and not doctor driven. The patient’s family wants everything done regardless of the outcome

being the same regardless of what we do.” (DWD # 9) and “Patients understand but sometimes

do not want to give up because of their family’s involvement. We all will die so why not do it

well!! (DWD # 11) When a family knows they have options. It depends on how they feel about

their own mortality as to how they will react. The older the patient is the harder it is to let go of

their loved one. If they are younger 45-50, and they are dying it can be easier to make decisions

because the decision maker may not be that close to the end of their own lives but when mom is

90 the children (older) and it becomes harder to let go because mom has always been there for

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them. (DWD # 6) Death is prolonged. With medication and machines. Vents and technology.

Over time it has made it worse by keeping a patient alive when there is no hope and it is driven

by the families which I do not understand. (DWD # 9)

Subthemes of Family

As noted previously, family resistance and unwillingness to move from curative mode of

care to one of caring is a major roadblock to dying with dignity. The subthemes related to family

communication include denial, lack of understanding, and unwillingness to let go. Participants

suggested “The patient’s family wants everything done regardless of the outcome being the same

regardless of what we do. Denial is a strong component of this unwillingness to let go.” (DWD #

9). “Death is common. How that death is experienced depends on the family and team taking

care of the dying patient. Some families are willing to let people go and some are not.” (DWD #

11) “There is a lot of work to do with the acceptance of death by the family and nurses must be

cognizance of what is being said and done. Even if the nurse (s) is tired they must stay in control

of their own thoughts and emotions in order to help the family with that acceptance.” (DWD # 4)

“Over time it has made it worse by keeping a patient alive when there is no hope and it is driven

by the families which I do not understand. The doctor, the leader should be driving the bus, why

doesn’t he explain that the patient is terminal.” (DWD # 9)

Theme # 3: Technology

Advances in technology have both positive and negative implications for the critical care

patient. Technology has provided the critical care health care team with the tools necessary to

improve life and sometimes the outcomes of the critically ill patient. For the younger patient with

little to no comorbidities, these advances can be instrumental in their recovery. For the older

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patient with multiple comorbidities this may not be an advantage and in fact may prolong the

inevitability of death. This prolonging of death could mean increased pain and suffering

impeding on the death with dignity.

Study participants stated “…good outcomes with the younger patient, negatively we keep

the body alive but not any quality of life” (DWD # 1) and “technology has made it worse. I do

not think anyone wants to die with a tube in his throat. Sometimes a vent is a bridge to getting

better but that does not always happen” (DWD # 9).

Technology has affected dying, making worse for the most part. Just because you can do

something doesn’t mean you should do something!! I keep thinking about it, we can do

many things but will it make it better, will it save you, will it keep you from going into

financial ruin. Grabbing at straws. Is anybody giving the family all of the information?

Tell them all of the outcomes but we don’t many times. It seems like it gives us

opportunity to do things that we may not necessarily need to do. (DWD # 7)

More technology extends lives but we do not have an exit plan in place. We need an exit plan.

When does the quality of life override the technology we have in place? People are told

interventions will save your life even if it is temporary. Surgical doctors are the poorest at this

process. Even if their patient has a stroke or other life changing event if the patient is pegged and

trached and leaves the hospital, it is considered a success?” (DWD # 11)

Subtheme of Technology

Technology has improved health care and help extend lives but is this not always

advantageous for the patient. The subthemes identified for this process are as follows; when is

enough, enough and keeping someone alive even when the outcome will not change. Participants

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suggested “Technology prolonged someone who would have died right away. Not dignified”

(DWD # 4) and “I do not think anyone wants to die with a tube in his throat” (DWD #9). Other

suggests included

Technology is improving the level of health care we provide but sometimes the level of

care needs to be rethought and we need to step back for the most critical patient that is

going to die regardless of the technology we provide. (DWD # 6)

Understanding the importance of knowing when to say no and move forward toward a

comfortable or dignified death is not easy as noted by the study participants. Finding a solution

to this problem will not be easy and may be impossible in some cases.

Theme # 4: Lack of education

Education or lack of education was a major theme throughout the interview process; the

differences on where that education should start remained a diverse part of the many responses

of each participant. Suggested education ranged from the study of death and dying, advanced

directives, the true meaning of a DNR, comfort measures, and palliative and hospice care. This

education was directed at physicians and nurses with suggestions of that education starting while

in school and continued education throughout their careers. This is supported by the following

statements “Always more room for education and should happen in school during classes”

(DWD # 10) and “All of us need more education with dying with dignity especially approaching

and communicating with patients and families” (DWD # 2). Changing this mindset will come

with education about death and dying with dignity it does not have to be about a DNR order.

Good role models, experienced nurses teaching the new nurses with their words and actions.

Money has to be a part of the education. Use this money at the front end of life and not at back

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end which is happening every day. We waste a lot of time and money at the end-of-life and that

does not have to happen. (DWD # 11) Lack of knowledge more with doctors then nurses. Lack

of inner strength in your head and in your heart. You have to recognize and it is the end of the

road and there is another door opening and you may have to escort them. (DWD # 4)

Subtheme of Lack of Education

Education was a hot topic amongst the study participants. Many stressed the importance

of education for the physicians as well as nurses and where that education happened varied.

Some felt death and dying education should take place while receiving their initial education

whether in medical or nursing school and others believed this type of education can take place in

the workplace during orientation and as an ongoing component of continued education. Here are

some examples of the thoughts of the study participants “Always more room for education and it

should happen in school during classes” (DWD # 10) and “Are nurses getting enough education?

No, absolutely not, they should be getting it in nursing school. And when they are out of nursing

school they should see what happens when you at the bedside” (DWD # 4). As a nurse educator

and a critical care nurse we do not spend enough time teaching about death and dying with

dignity. Maybe through simulation we can have the patient die and there is nothing they can do

about it. Then during debriefing you show them what went on and what we do. Simulate death

and dying or give them case studies where there is no right or wrong answer then ask for their

opinion and how you feel about it. (DWD # 3) These are strong statements and these responses

were given with a great deal of passion as noted in their voices and their expressions. Education

is an important aspect to caring for the dying patient and dying with dignity as noted by the study

participants.

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Theme # 5: Dying with Dignity

Dying with dignity is an important topic and one that emerged multiple times throughout

the interviews. Several positive examples were provided about dying with dignity as well as

multiple negative examples. The meaning of dying with dignity was included in these

discussions. Each study participant provided different versions of what dying with dignity meant

to them and to their patients. Participants suggested “Sometimes we treat our animals better than

we treat humans” (DWD # 1), “No one should die in the critical care unit” (DWD # 9), “As a

young nurse I watched the older nurses making patients comfortable and this experience did the

same for me moving forward” (DWD # 3), and “Dying with dignity is dying they way that

person wants to die” (DWD # 7). …cancer patient, full of cancer and the family decided to stop

care with a goal to get him home but he didn’t make there. Family was present and his wishes

were met but it would have been nicer for him to get home. (DWD # 1)

Subthemes of Dying with Dignity

Caring for the dying patient can be a difficult task. Allowing that death to be dignified

could make it even harder. The subthemes identified for the theme of dying with dignity are

comfort measures, hospice and palliative care, and following the wishes of the patient. These

subthemes were repeated by several research participants. The study participants suggested

“Comfort for the family and patient with a realization of “patient is going to die” (DWD # 1) and

“Comfort care for the dying patient. Not starting feedings, honoring their wishes and not our

wishes” (DWD # 2) “Depends on the doctor and whether that doctor is comfortable and the

nurses if they are comfortable (comfort measures) (giving meds as ordered even if it could have

adverse effect) Discuss with the family and let them know what may happen as their loved one

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dies. “(DWD # 3) “We will do everything possible to keep a patient alive. In the last five years

now, death is a part of life, (not with everybody) but pretty much it is a mechanical thing, to keep

them alive and death is something that makes you feel defeated and not be able to recognize that

death is something that happens.” (DWD # 4) These examples provide evidence that dying with

dignity is possible but raises the question, is it actually happening in the critical care unit?

Table 3: Summary of the themes and subthemes

Main Theme Subthemes

Communication  Family
 Nurses
 Physicians
Family  Denial
 Lack of understanding
 Unwillingness to let go
Technology  When enough is enough
 Keeping someone alive even when the
outcome will not change
Lack of Education  Nurses
 Physicians
Dying with Dignity  Comfort Measures
 Hospice and Palliative care
 Following the wishes of the Patient

Conclusion

In chapter four the researcher discussed data collected from the interviews with critical

care nurses. This data was analyzed and themes and subthemes emerged. Table 2 provides a

summary of the themes and subthemes. The primary themes developed from this study are

communication, family, technology, lack of education, and dying with dignity. Each theme then

had several subthemes which will be covered in more detail in chapter five.

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 Communication or lack of communication with the patient, family members, and the

collaborative health care team is a major theme discovered throughout the interview process.

Communication should be clear and concise in a language those being communicated too can

understand. Family resistance to allowing their loved one to die even when the outcomes will not

improve was a resounding theme echoed by most of those critical care nurses interviewed.

Frustration and anger could be detected in some of the nurses and he or she discussed this theme.

Advances in health care technology has provided the critical care nurse with a means to prolong

life but it was noted that that prolonging was not always beneficial to the patients they were

caring for and in fact it bought the patient a few days of life but no difference in the overall

outcome. Most of the critical care nurses believed that nurses lacked the necessary education to

care for the dying patient. Where that education should be obtained differed somewhat but the

overall consensus was the need for more education regarding the care of the dying patient.

Evidence of dying with dignity was noted during the interviews as well as many stories of not

dying with dignity. Most study participants concurred that not dying with dignity occurred much

more than dying with dignity. Chapter five will discusses the conclusions and recommendations

based on the study’s findings.

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 Chapter 5

Conclusions and Recommendations

The thought of dying can be a difficult process for most anyone, just as caring for the

dying patient can be a challenge for nurses in general. Caring for the dying patient in the critical

care setting can be even more difficult. How that death is perceived by the family of the dying

patient can have a deep impact on the memories of the end-of-life care that was provided for

their loved one (Fridh, 2014). The purpose of this descriptive phenomenological study was to

explore critical care nurses lived experiences of caring for the dying patient in critical care unit

(CCU). Understanding the process of dying and dying with dignity is difficult and may not be

completely understood by everyone. A pilot study was conducted to test the study method which

included an interview process. Two critical care nurses were selected from a pool of critical care

nurses known to the researcher. The pilot study provided the researcher with practice sessions

testing the interview process, informed consent, questions, time allotment, interview location,

and the digital recording process to be used for the interviews. It also provided the researcher an

opportunity to practice asking the questions thus enhancing the interview process (Doody &

Noonan, 2013). Preparation for the actual interview included the pilot study which was integral

in the preparation process.

Twelve critical care nurses were recruited for this descriptive phenomenological study.

These critical care nurses are all members of the American Association of Critical Care Nurses

(AACN) and recruited from the Midwestern region. The interviews were semi-structured

consistent with one of the most commonly used processes in qualitative research (Holloway &

Weaver, 2010). The purpose of the interviews was to seek and capture the essence, perceptions,

and lived experiences of caring for the dying patient in the CCU and dying with dignity. The

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interview guide (Appendix B) was used consistently with each interview. Probing questions were

also included in this guide. The probing questions were used according to the responses given by

the research participant. These “in the moment” opportunities provided valuable data and

support to the initial questions that were asked. Data saturation was achieved with the first nine

participants (n=9) and an additional three research participants (n=3) were interviewed to ensure

that saturation was met and to add rigor to the research study. All of the recruited research

participants completed the interview process.

Research Method

A descriptive phenomenological research design, which included a prescribed protocol

and use of an interview guide to collect data, was used for this research study. Using a

phenomenological research design provided a means to generate knowledge through nursing

research (Moi & Gjengedal, 2008). Using a descriptive phenomenological research design

allowed the researcher the opportunity to share those lived experiences of caring for the dying

patient in CCU to explore the essence, and meaning of dying with dignity in a critical care

setting. This research method provided the tools needed to seek out the perceptions of the critical

care nurse and dying with dignity in the CCU. In-depth interviews of critical care nurses were

conducted, exploring the perceptions and lived experiences of each nurse as it relates to dying

with dignity in the CCU. The goal of the interview process was to allow nurses to tell their story

and share their thoughts about the dying process and dying with dignity in the CCU. The data

collected from these interviews was analyzed and coded allowing themes to emerge from this

interview process.

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 Communication and education are key components of good end-of-life for the dying patient.

Chapter four illustrated the findings of this study. Chapter five will discuss these findings in

more detail. The primary goal of this study was to explore the critical care nurses lived

experiences of caring for the dying patient in CCU. The themes identified from the data collected

for this study were

 Communication

 Family

 Technology

 Lack of Education

 Dying with Dignity

Discussion of the Themes

Theme # 1 Communication;

Communication was identified as an important component of caring for the dying patient

and the connection of dying with dignity. The majority of the research participants believed

communication should start early with the physicians, nurses, and family members. Physicians

can start discussions prior to a health crisis especially for the elderly patient but not limited to

any particular age group. If the physician and patient have a good relationship and good

discussions about end-of-life wishes then the dying process should become one of care, comfort,

and without suffering making sure the wishes of that patient are being implemented. The

discussions may also take place at the bedside in a health care setting. Good communication

skills provide opportunities for good discussions about end-of-life care. Multiple studies, both

quantitative and qualitative supports effective communication and support between the

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caregivers and families throughout the decision making process is important to families members

of the dying patient (Lautrette, Darmon, Megarbane, Joly, Chevret, Adrie, Azoula et al (2007).

Subthemes of Communication

The emerging subthemes for communication clearly articulate the participants in the

communication process; family, nurses, and physicians. This mix of subthemes were derived

from multiple responses provided by the study participants. The lack of communication or

ineffective communication with family members of the dying patient was voiced by several of

the study participants. It was noted that some family members, even when the discussion

revolved around their loved one refused to listen or did not understand the severity of their loved

ones condition. This break in communication with the family caused a great deal of frustration

for the critical care nurses and physicians. Inexperience was also noted with younger, new nurses

to the critical care setting when communicating with family members of the dying patient. This

lack of experience with communicating end-of-life discussions could contribute to the lack of

understanding some family members may have. Communication skills can be learned through

experience but specialized training would also benefit the critical care nurse (Shannon, Long-

Sutehall, & Coombs (2011).

Some physicians also struggle when communicating with family’s about end-of-life

issues. The study participants noted the lack of training and the unwillingness to discuss end-of-

life issues may be reasons for poor communication. Some of the study participants questioned

why the physician did not or would not discuss these issues with families but did not have any

suggestions for improving the process. Many critical care physicians lack communication skills

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due to lack of training and depend on the guidance of senior physicians in order to learn

(Gauntlett & Laws, 2008).

Collaborative communication amongst the critical care team is an important aspect when

providing care at the end-of-life. Unfortunately this does not happen often enough according to

the study participants. Communication must be congruent among the critical care team if a good

death is going to be a part of the end-of-life care. In a study conducted in 2007 it was noted that

if the team members understand the importance of the patient care goals necessary to provide

end-of-life care communication will be more open and effective (Reader, Flin, Mearns, &

Cuthbertson 2007).

Theme # 2 Family;

The second theme identified was family and the frequency of families being resistant

and/or unwilling to stop care even when the chances of survival are not possible. Several study

participants concurred with this topic. Here are some quotes discussing this issue: “We see our

dog suffering and we take them to the vet but families see their mom or dad suffering and refuse

to stop” (DWD # 1), “Guilt or may be living with that person and needs the income to maintain

themselves, difficult to say sometimes. Guilt is definitely an issue” (DWD # 1) “Most families

do not have enough knowledge base to make a decision when it comes to the dying patient”

(DWD # 3).

It was difficult for most of the study participants to understand and many of them voiced concern

identifying this as a trend they had noted over the years of providing care at the end-of-life.

Reasons for families’ denial of the need to stop care varied depending on the situation but some

reasons noted include; decision making varied between younger and older patients dying in the

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critical care unit (CCU), patient/family driven and not doctor driven, and patient may understand

the declining outcomes of their prognosis but not willing to let go because of their family. The

critically ill patient can cause havoc family members creating a sense of disequilibrium within

that family disrupting their roles and function (Cypress, 2011).

As noted by one of the study participants, decision making varied depending on the age

of the dying patient. When family members are making the decisions some family members

make end-of-life decisions easier when their loved one is younger, 45-50 compared to the older

patient who is dying. The rationale given with this discussion noted when the loved one is older

family members tend to be closer to that person thus making decision making more difficult. The

decision makers own mortality may also impede on the decision making process. The older

decision makers may fear those end-of-life decisions since their own lives may be coming closer

to the end as well.

Another possible reason for family resistance or unwillingness regarding end-of-life

decisions could be related to who is in charge or the care of the dying patient. As health related

issues arise it can be said the one in charge should be the physician taking care of that dying

patient. This is not always the case however. While this statement is the opinion of the study

participant it did seem to have some validity. As the interview moved forward, it became clear to

the primary researcher that some families do appear to run the show while caring for their loved

one and the physician allows this to happen all too often. Arranging family conferences during

the first few days of a critically ill patient’s admission could provide important information and

establish the plan of care for that patient (Nelson, Walker, Luhrs, Cartez, & Pronovost, 2008).

While this issue may lead back to the communication discussion or lack of communication

personal experiences concurred with the statements provided by this study participant.

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Subthemes of Family

The emerging subthemes of family are denial, lack of understanding, and unwillingness

to let go. Denial, lack of understanding, and unwillingness to let go were subthemes uncovered

during the interview process and were closely linked during the interview process. The study

participants exhibited a sense of anger, disbelief, and sadness as each participant shared their

experiences with dying in the critical care unit (CCU). The study participants noted how difficult

it was to hold back their own thoughts and feelings regarding the unwillingness of many families

to seemingly disregard their loved ones as they were dying. Regardless of the guidance provided

by the physicians and nurses, some family members refused to look beyond those feelings,

leaving their loved one suffering and moving toward death regardless of the efforts made by the

critical care staff. Many study participants felt frustration and even anger discussing these issues.

The lack of understanding brought a great deal of frustration to many of the study participants.

As noted by study participant (DWD # 10), “Some families are willing to let go and some are

not.”

Theme # 3 Technology;

The advances in technology noted in the CCU have provided many changes in how

health care is delivered in this setting. It is important to note however that not all of these

advances have been seen beneficial when caring for the dying patient. In a study conducted in

2010 looking into the historical advances in technology the ethical issues facing critical care

nurses was one of the focuses (Browning, 2010). Continuation of life when that life is prolonged

to the point of suffering was considered a hazard to end-of-life care that was being provided. The

use of the advances in technology as it relates to end-of-life care for the dying patient has

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become a focal point in the media and the public is becoming more aware of these inadequacies.

Many of the study participants agreed that these advances are not always a benefit to the patient

population seen in the CCU. About 2.4 million people die each year with 80% of them in the

hospital. Of those deaths, one fifth of them occur in the CCU (Browning, 2010). This large

percentage of dying patients has increased the number of ethical issues seen in the CCU related

to dying and dying with dignity. As one study participant noted, “death is prolonged, with

medications, machines, vents and technology.” And “patients should not die in the CCU.” Strong

words from critical care nurses who have been caring for patients especially the dying patients

for an extended period of time.

One study participant provided strong words (as noted in chapter four) regarding the

advancements in technology in the CCU.

More technology extends lives but we do not have an exit plan in place. We need an exit

plan. When does the quality of life override the technology we have in place? People are

told interventions will save your life even if it is temporary. Surgical doctors are the

poorest at this process. Even if their patent has a stroke or other life changing event if the

patient is pegged and trached and leaves the hospital it is considered a success. (DWD #

11)

An actual exit plan was not discussed but this topic would make for an interesting debate

amongst the critical care team caring for the dying patient. No one plans to die but it may be

something each of us should think about, share with our loved ones and make sure our health

care provider is on board and willing to follow those plans.

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Subthemes of Technology

The subthemes for technology are “when enough is enough” and “keeping someone alive

even when the outcome will not change.” In a similar study conducted in 2007, interview

participants noted the ethical issues related to the advanced technology in the CCU. One

participant noted that technology caused uncertainties about the decisions needed to be made

between life and death (Wikstroma, Cederborg, & Johanson, 2007). Another participant noted

“to less experienced critical care nurse, technology can be confusing. At first you are doing

everything and then you decide to withdraw care” (DWD # 11). This is confusing to the nurse

and the families alike. These statements, while limited speaks volumes about the decision

making process at the end-of-life can be difficult for everyone. Technology can give family

members hope when hope may not be feasible and care may be futile at best. The prospects of

hope leave families confused and unable to decide when enough is enough. Losing a loved one is

hard enough and making the decision to stop may leave families feeling guilty. This confusion

and possible feeling of guilt make the decision making process impossible for some and stopping

care is not an option. The subtheme of keeping someone alive when care is futile leaves critical

care nurses confused, angry, and without any explanation of the decisions some families make at

the end-of-life.

The study participants, when asked had no real answer or solution to this subtheme.

Some felt the physician needed to take charge and make the decisions about end-of-life issues for

the patient and family. In other words, “the physician would be driving the bus not the families”

(DWD # 9). This single response is important and ties many other responses form the study

participants. Examples of responses provided by the study participants related to physician

involvement were “Doctors need to be involved but many refuse to discuss or even consider

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changing the code status” and “Doctor visits would also be a good place to start. The discussion

can be mutual and decisions can be made” (DWD # 1), “Doctors need to be comfortable with

end-of-life discussions. When they are end-of-life decisions will be easier and the quality of

dying will improve” (DWD # 3).

It is important to note that not all doctors lack experience in the end-of-life care for their patients.

As noted previously, DWD # 7 quoted the thinking process of a physician she had worked with

in the past.

A doctor who specializes in geriatrics stated that a DNR order is the only order we write

to not do something. Instead we should change that to we do not resuscitate anybody

making it an order unless otherwise directed. Instead of people coming into the hospital

expecting everything to be done; only come to the hospital maybe when they want things

done. Switch in family, doctor, nurses perceptions. Everybody would have to be talked

to. They would be asked if they wanted resuscitation instead. Make it easier for the

patient brought into the ER when everything is done and the family arrives and states

they did not want that. (DWD # 7)

While this thought/idea would revolutionize the end-of-life care provided to the patients entering

into the hospital. This process would guarantee discussions would be initiated and patient wishes

would be honored while other patients would start to think about end-of-life decisions, very

interesting concept.

Theme # 4 Lack of Education;

Lack of education was an important theme identified by the study participants and the

responses about where and how that end-of-life education could take place were diverse. It was

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suggested that end-of-life education begin at the initial level of nursing education, nursing

orientation, and ongoing throughout a nurses career as continued education. The areas to be

educated on varied from advanced directives, DNR status, comfort measures, dying with dignity,

and palliative and hospice care. The education could be conducted by physicians and/or nurses

who specialize in these areas of nursing care. Physician education could begin while in school

and continue throughout their careers. This education was noted to be as important as saving

lives.

Research has been conducted around the world about end-of-life education and the

importance of this type of care. One study conducted in 2009 surveyed nurses statewide.

Twenty-three end-of-life topics were used to survey these nursing group (n=567) and twenty-one

of those topics provided proof that significant deficiencies existed (Schairet, 2009). The topics

explored ranged from end-of-life knowledge, skill, attitude, belief, and previous education. The

majority of the nurses surveyed lacked any formal end-of-life education while in undergrad

school or as a continuous education component of their nursing careers. Interestingly, even the

few that received formal education scored poorly on the knowledge and skills question about

end-of-life issues.

Subthemes of Lack of Education

The subthemes identified for the lack of education theme were nurses and physicians.

These two areas were consistently noted throughout the interview process. Both of these

professionals lack education in the end-of-life care and communication was a key component of

the lack of knowledge. In a study conducted in 2015 and published in 2016 described some of

the barriers identified during five focus groups. Second year nursing students (n=9) and fourth

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year medical school students (n=10) were divided into five focuses groups (Gillett, O”Neill, &

Bloomfield, 2016). The focus groups identified several barriers to end-of-life education. Barriers

noted are lack of senior leadership in guiding the students in the end-of-life discussions and

making sense of those discussions, knowing what to say and how to say it, dealing with

emotional responses, wasting patient’s time, and coping with the distressing experiences of this

type of discussions. The factors identified to improve end-of-life communication were having

good role models, previous experience, and classroom education. Remarks noted from the study

participants included “Always more room for education and it should happen in school during

classes (DWD # 10).

Changing this mindset (fear of interfering with the plan of care) will come with education

about death and dying with dignity, it does not have to be about a DNR order. Good role

models, experienced nurses teaching the new nurses with their words and actions.

Money has to be a part of the education. Use this money at the front end of life and not at

back end which is happening every day. We waste a lot of time and money at the end-of-

life and that does not have to happen. (DWD # 11)

Dying with dignity negative, and need more communication. Families do not understand

the suffering or want to understand even when they hear their loved one moaning and

crying. DNR is not understood even with hospice being a part of the conversation.

Improved communication is needed. (DWD # 2)

Education and communication are key components of this subtheme. How and where this

education could take place is still up for debate but it should take place early in a physicians and

nurses careers.

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Theme # 5 Dying with Dignity;

Dying with dignity is an important theme and the study participants were very vocal

about this topic. Several examples were provided during the interviews, both positive and

negative. The definition of dying with dignity varied from one study participant to the next.

Comfort care was one area that most of the critical care nurses agreed on throughout the

interviews. Every death is an individual experience and those deaths have a direct effect on the

critical care nurses providing end-of-life care. Facilitating a dignified death can be challenging

and balancing those challenges with the other tasks required in the CCU may be difficult. As

more research is conducted about this topic a model of care focusing on the end-of-life care and

dying in a dignified manner.

Decreasing morbidity and mortality in the CCU is a primary of this area of care. As

technological advances continue moving away from these factors can be difficult. Not all critical

care nurses acknowledge dying in the CCU and acknowledgment of dying is an important step to

providing comfort care at the end-of-life (Bloomer, Endacott, O’Connor, & Cross, 2013). These

authors conducted a qualitative, observational study using non-participant observation of nurses

caring for the dying patients followed by focus groups discussing those observations.

Acknowledgement of the dying patient is an essential step in providing quality care at the end-of

life. This study also recognized that further studies were required to review the nurse’s attitudes

toward death and how care can be affected by these attitudes. Taking the first step of recognition

of a patient’s condition, especially at the end-of-life could bring death into full focus and allow

that death to be as dignified as possible.

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Subthemes of Dying with Dignity

The subthemes identified for dying with dignity are comfort measures, hospice and

palliative care, and following the wishes of the patient. Dying in the CCU may restrict some of

the components of providing comfort care at the end-of-life. As two study participants noted:

“Patients should not die in the CCU” and “dying with dignity is hard to do in the CCU since it is

not a hospice type of situation” (DWD # 9), “My personal experience has always been to try to

make the dying process as humane as possible. Dying with dignity is dying they way that person

wants to die.” (DWD # 7)

The critical care nurse can bring comfort care to the forefront of end-of-life care in the CCU

which is a cold and sterile environment and achieving a peaceful death can be difficult. In a

study conducted in 2013 five (n=5) critical care nurses were interviewed discussing this topic.

Three themes emerged from this study (McCallum & McConigley, 2013)

 The nurse as protector

 Conflict in care

 Peace and quiet

These three themes speak volumes. The nurse can be the protector, director, and the voice for the

dying patient working to provide an atmosphere that supports comfort care for the dying patient.

Moving from a curative stance to one of comfort and caring can be difficult for the critical care

team. As the protector, the critical care nurse can make that transition a reality. This transition

then supports comfort without conflict and an area that is quiet and peaceful for the dying patient

and the family.

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 Hospice and palliative care in the CCU is becoming more prevalent but the transition is

slow and untimely at times. As two study participants noted “Palliative care needs to be involved

sooner and make sure spiritual care is involved as well. Sooner than we do. We wait until the

very end. Doing it sooner is still better even if that patient survives” and “He and his wife were

very comfortable with talking about the end of life and they had a plan. Palliative care can do

that. Family and patients need to be prepared when dead is inevitable (DWD # 3).

Palliative care can be used as an adjunct to hospice care depending on the severity of the disease

process of the critical care patient. Palliative care is described as an approach to improving the

quality of life for patients facing life-threatening illnesses providing a means for prevention and

relief of suffering (Mirel & Hartjes, 2013). Working with the Palliative care and Hospice nurse

can bring these processes forward in a timely manner increasing their presents in the CCU and

working with the collaborative CCU team to improve end-of-life care. Hospice care, while

similar to palliative care is the last step toward the death. If a patient is certified as having less

than six months to live and curative care is no longer an option then hospice care can be initiated

(Bonebrake, Culver, Call, & Ward, 2010). Decreasing pain and suffering is a primary goal of

these services.

Following the wishes of the patient is an important component of dying with dignity. Is

following those wishes easy for the health care team and family, in most cases probably not but

in order for that death to be dignified those wishes should be followed. Tying communication

into this subtheme provides allows for open communication between the health care team,

family, and patient about end-of-life wishes (Campbell, 2013). This communication can be

facilitated by anyone as long as those involved remind open minded and willing to follow

through on the wishes of the dying patient.

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Conclusion

Caring for the dying patient at the end-of-life can be different for the critical care nurses.

The critical care nurse carries many responsibilities in the CCU and end-of- care is only one

aspect of those responsibilities. The CCU team care for the sickest of the sick and caring for the

dying patient may not be the highest priority for some critical care nurses. Dying with dignity in

the CCU can become even more difficult. As this study shows, the reasons for these

inconsistencies in the care for the dying patient are many. The issues identified by the study

participants included communication or more specifically lack of communication between the

patient, physicians, nurses, and family members. Suggestions offered by the study participants to

prevent this situation ranged from good communication in the physician’s office, with the

physician and patient talking about end-of-life issues to the importance of documenting those

wishes. Another suggestion noted that end-of-life discussions should take place at home between

the patient and the family members. These discussions can be difficult but important even when

the patient is still healthy and living well every day. Participants also discussed the importance of

clear and concise communication when end-of-life is approaching such as family conferences

discussing the appropriate care options, the futility of care, and palliative and hospice care. These

conferences should be to the point and honest while maintaining an atmosphere of compassion

and caring. The move from a curative model of care to one of caring may be difficult for some

including the patient, family members, physicians, and the critical care nurses.

The theme of family runs concurrently with communication. Several study participants

felt that some family members were a road block to good end-of-life care and dying with dignity.

Areas of concern included the unwillingness of some family members to support a move from

the curative mode to one of caring for the dying loved one. Some study participants believed this

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resistance may have been due to feelings of guilt, not accepting their own mortality, and fear of

losing someone they cared for their entire life. With good communication some of these issues

could be prevented or dealt with much sooner.

The advancements in technology in the CCU have also impacted the process of dying

with dignity. As technology continues to improve care in the curative mode of care in the CCU

sometimes this technology is keeping patients alive when the futility of care is clear to those

caring for these patients (Beckstrand, Lynn, & Kirchhoff, 2006). This advanced technology can

also provide a false sense of hope for some patients and family members when the end-of-life is

nearing, regardless of the level of care being provided. Moving from the curative mode to a

caring mode can be difficult but it must be considered when a patient’s death is nearing.

A lack of education regarding end-of- life care was noted by all of the study participants.

Thoughts about where that education should occur varied from the undergraduate degree,

orientation when entering into the critical care, to continuing education throughout a critical care

nurse’s career. Everyone concurred, all nurses required more education about caring for dying

patients and facilitating a dignified death than is currently being offered across the nursing

profession.

Dying with dignity was an interesting topic for the study participants and having an

opportunity to talk about it was perceived as a cathartic experience for some. Each had their own

thoughts about a dignified death and shared many stories related to what is considered a good

death and a bad death. Unfortunately, the bad deaths outnumbered the good deaths. On the up

side, many agreed that the process of dying in a dignified manner in the critical care has been

improving with the increased awareness of palliative and hospice care. The roadblocks to a

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dignified death were noted with the many themes and subthemes identified throughout this study.

Poor communication with the patient, family, and the health care team were a few of the

identified theme. Family issues with denial, refusal to let go, and lack of understanding were

examples of those roadblocks. Advanced technology provides a means for improved care but

when the futility of care is noted it can also be considered a roadblock. Lack of understanding

what a dignified death entails can also be a roadblock. In order to understand the process of death

and dying it is important for the nurse to be provided a base of learning with these topics as the

primary learning objective. Many study participants noted the importance of experience but

learning about death and how a dignified death should take place should start with a nurse’s

basic education and continue throughout that nurse’s career.

Each of the identified themes seemed to be connected in one way or the other. These

connections provide a base for a better understanding of the process of dying and dying with

dignity. The critical care nurses primary focus is providing a curative mode of care but as more

patients enter the CCU who are sicker and closer to death that care must shift from a curative

model to one of caring. This shift in mind set, moving from a focused level of care to end-of-life

care may be difficult but through a better understanding of death and dying it may become a

common shift in care.

Recommendations

The following recommendations are grounded in the data collected from the study

participants. Recommendations include increased education for nurses regarding end-of- life

care, death and dying, and the importance of palliative and Hospice care. This education could

begin in the early stages of learning for the new nurses and to continue throughout the nurse’s

96
career. Medical education could also be enhanced covering end-of-life issues and how to

approach patients and families when death is going to occur and the futility of care is not going

to prevent that death from taking place. Improved end-of- life care has a clear tie to

communication and the importance of direct, honest communication and when that

communication should take place. Community education is another component of the data

collected from this study. If the members of a community are informed and educated about

advanced directives, living wills, and other components of end-of life decisions then the end-of-

life issues discovered from this study may be prevented moving forward.

Nursing Education

According to the data gathered for this study critical care nurses lack education about

end-of-life care. Many participants noted that their knowledge of caring for dying patients was

developed though experience and watching other critical care nurses caring for the dying

patients. Caring for the dying patient is a difficult process for some nurses and end-of-life care

can make a profound impact for the family members of that dying patient (Fridh, I, 2014). The

need for an improved educational process regarding dying, death, and end-of-life care is not a

new discovery. In an article published in 1988, it was noted the need for further nursing

education focusing on end-of-life care (Thomson, 1988). This study confirmed what has been

known for almost 30 years. These educational needs do not end in the classroom. Experienced

nurses should mentor new nurses entering into the CCU, guiding them as they gain experience

and expertise caring for the dying patient (Fridh, 2014).

As the new nurse enters into the nursing profession and begins to work in the CCU, end-

of life education should be included in the nursing orientation process. As some of the study

97
participants noted, end-of-life education should begin in school and continue throughout a

nurse’s career. DWD # 10 noted “Always more room for education. Should happen in school

during classes.” Also noted from DWD # 2 “All of us need more education with dying and dying

with dignity especially approaching and communicating with patients and families.” These

statements support the need for more end-of-life education at all levels of nursing.

The following specific actions are recommended to address the need for additional

educational opportunities for nurses regarding dying with dignity especially in a critical care

setting.

 Strengthen basic nursing curricula regarding caring for the dying patient and

possibly include simulated experiences allowing the nursing students the

experience of caring for the dying patient.

 Enhance orientation to critical care nursing by adding specific content

regarding advocating for and facilitating a dignified death ion the critical care

unit.

 Provide ongoing learning experiences for seasoned critical care nurses

regarding palliative and hospice care to allow patients to die with dignity in

the critical care unit.

Medical Education

Nursing education was not the only deficiency noted in the study. Physician education

related to end-of- life care and dealing with death and dying was noted by several study

participants. In a study conducted in 2011, several themes merged in regards to lack of medical

education. Themes noted were lack of exposure to the dying patient including being kept away

98
from these patients, coming to the realization that patients do die, learning by doing, the role of

nursing staff, and death and dying in the hospital (Gibbins, McCoubrie, & Forbes (2011).

Through improved education, end-of-life care can improve for the dying patient and their

families. Working collaboratively, nurses and physicians caring for the dying patient could

become an improved process allowing the patient to die with dignity and decreasing the impact

of that death on the loved ones left behind. This collaboration could take place with shared

educational processes in the hospital setting with together and not nurses working for the

physician.

The following specific actions are recommended to address the need for additional

educational opportunities for physicians regarding dying with dignity especially in a critical care

setting.

 Medical education should include the care of the dying patient early in a

physician’s training. This education should be included in multiple areas such

as cancer, trauma, and end stage disease processes with emphasis on shifting

to palliative care with a terminal prognosis.

 Physicians should work collaboratively with nurses providing excellent care

to allow patients to die with dignity.

Community Education

Community education was suggested as a good place to provide end-of-life education

such as advanced directives, living wills, and other components of end-of life decisions. Many

community Hospice and Palliative care services offer community education but it could be

extended to senior centers, area churches, and other community gatherings that may be taking

99
place. The Institute of Medicine (IOM) provided the first report on public health and end-of-life

issues in 1997. In 2014, the fifth report was published and it acknowledged significant progress

related to end-of-life issues (Rao, 2015). Most importantly, progression was noted in increased

public education and engagement with respect to end-of-life issues. This report supports what

some of the study participants noted during the interview process. Many patients entering in the

CCU are critically ill and most have not heard of advanced directives and living wills. This lack

of education creates a roadblock to making good end-of life decisions. The IOM report also

noted the lack of many articles targeting end-of-life issues and public health but the public health

community is acknowledging this issue. Moving forward, public or community education could

reduce issues related to end-of-life and the decision-making process patients and families may

need to make when a loved one is approaching death.

The following specific actions are recommended to address the need for additional

community education regarding advanced directives, living wills, hospice, and palliative care.

 Community education can be offered in senior centers, churches, and other

gathering areas offering advice on advanced directives, living wills, hospice,

and palliative care.

 Community education regarding end-of-life planning could reduce end-of-life

decision-making issues.

Communication

Improved communication can also improve end-of life care for the dying patient. This

communication is not limited to any one area of health care. Physicians, nurses, social workers,

and case managers could all improve their communications skills when caring for the dying

100
patient in the CCU. In a study conducted in 2011, 27 (n=27) family members of 21 deceased

patients noted unclear communication by the health care team when discussing the conditions of

their loved ones. It was noted that nurses needed to take more responsibility and be honest when

communicating with the family members. Nurses have more exposure to the dying patient and

their perceptive about the condition of the dying patient should be shared in order to allow for

clearer understanding by the family members especially when making end-of-life decisions.

The following specific actions are recommended to address communication for

physicians, nurses, social workers, and case workers regarding dying with dignity especially in a

critical care setting.

 Physicians should communicate with their patients early to address

potential end-of-life issues. This communication can take place during

office visits, hospital admissions for none critical issues, and any follow

up care.

 Nurses need to advocate for the patient when communicating with other

health care providers regarding end-of-life discussions. This

communication should be honest and straightforward when end-of-life

discussions are taking place.

 Social workers should provide information about advanced directives and

living wills, communicating their importance.

 Case managers should coordinate all aspects end-of-life care providing

clear and concise communication to the patients and families.

101
Nursing Leadership

Nursing leadership could build upon this new found data and use it to implement new

policies and procedures regarding the care of the dying patient. Through a means of

transformational leadership, nursing staff could formulate, design, and develop these new

policies and procedures along with the education necessary for their staff members. This

education could target nurses and nursing assistants alike ensuring a consistent mode of care for

the dying patient. With the support of the nursing leaders this new process could be enacted in a

timely manner allowing nurses to take ownership of this process.

The following specific actions are recommended to address the importance of nursing

leadership regarding dying with dignity especially in a critical care setting.

 Transformational leadership can be used to facilitate shared leadership

allowing nurses to develop new policies and procedures regarding end-of-

life.

 Nurses can participate in developing end-of-life educational programs

required for all health care team members.

Nursing Practice

As noted above, with the support from the nursing leadership team a new mode of care

could be could formulated, designed, including the development new policies and procedures

and an educational component necessary nurses and nursing assistants. Care for the dying patient

will continue to change and improve through nursing research and the data collected for that

research. Moving forward, the need for a new model of care for the dying patient is needed and

can be made possible in the CCU and other nursing units.

102
 The following specific actions are recommended to address the need for additional

models of care for nurses regarding dying with dignity especially in a critical care setting.

 Add the findings of this study to the evidence supporting designing a new

model of care developed and initiated by nurses to improve the end-of-life

care in the critical care unit.

 Nurses in all practice arenas need to be cognizant of facilitating a dignified

death.

Further Research

Qualitative research typically has small samples and therefore the findings lack

generalizability. Qualitative research enables the researcher to immerse themselves in the human

experience (Magilvy & Thomas, 2009). In an effort to enhance the potential for generalizability

replicating this study in different environments is encouraged. Replicate this study by

interviewing critical care nurses employed in another area of the country to determine the

strength these findings. This study explored critical care nurses perceptions when caring for an

adult patient, replicate this study interviewing pediatric critical care nurses to see if there are

similarities or differences.

Further research is recommended in order to collect more data related to caring for the

dying patient and end-of-life issues in the critical care unit. Using descriptive phenomenological

research design could provide further evidence supporting the findings of this study and similar

studies. Collaborative research studies could assist in the development of curriculums in

undergraduate nursing programs and additional orientation standards related to caring for the

103
dying patient. Future studies could bridge the gaps in research, education, and in the nursing

practice as well as the development of nursing models illustrating how to care for the dying

patient and family members of that patient. Closing these gaps could improve nursing care for

the dying patient; enhance communication between the physician, nurse, patient, and family.

The following specific actions are required to continue to develop empirical evidence to

support nursing practice to support a dignified death especially in critical care units.

 Replicate this study in other areas of the country to strengthen the findings and

enhance the potential for generalizability.

 Replicate this study interviewing other critical care health care providers to see if the

findings from this study are mirrored by other disciplines.

 Conduct a study exploring nursing curricula at the undergraduate, graduate and staff

development levels for the inclusion of content on facilitating a dignified death.

104
Table 4: Summary of Recommendations

Nursing Education
 Need for improved nursing education for dying, death, and end-of-life care
 Education should take place at the undergraduate degree and continue with orientation,
and continued education throughout a nurses career
 Experienced nurses should mentor newer nurses when caring for the dying patient
Medical Education
 Physician education should begin early in their education for dying, death, and end-of-life
care
 Mentoring should take place early and often with newer physicians guiding them through
the processes of death and dying
 Physicians and nurses should work collaboratively using education and experience to
improve the delivery of care to the dying patient.
Community Education
 Community education was suggested as a good place to provide end-of-life education
such as advanced directives, living wills, and other components of end-of life decisions
 Community education could improve public knowledge regarding end-of-life wishes and
prevent unnecessary burdens on patients and families seeking care in the CCU
 Honest communication is an important aspect when discussing end-of-life issues
Communication
 Improved communication should be required by all members of the health care team
 Nurses should take more responsibility with communication
 Honest communication is an important aspect when discussing end-of-life issues
Nursing Leadership
 Transformational leadership is important and the leadership team should support the
nursing staff allowing them to formulate, design, and develop these new policies and
procedures along with the education necessary to care for the dying patient
 Nurses need to take ownership of these new processes.
Nursing Practice
 With support from the nursing leadership team, nursing can be instrumental in
formulating, designing, and developing the policies and procedures necessary to provide
excellent care to the dying patient in a manner that would allow that death to be one of
dignity and support the wishes of the dying patient and their family members.
 More research providing the evidence necessary for nurses to be the innovators of a
model of care directed at end-of-life care.
Future Research

 Replicate this qualitative study in other venues and with other health care providers.
 Explore curricular content on death with dignity in nursing programs and staff
development offerings within health care organizations.
 Conduct an expansive literature review and combine with the study’s findings to develop
an empirical definition of the concept of death with dignity in critical care.

105
Summary

As in life so is death and dying can be a difficult process for everyone involved. Dying

in the critical care unit (CCU) can make death and dying even more traumatic for the dying

patient and their family. The role of the health care team especially the critical care nurse is vital

to supporting the dying patient as well as making that death as comfortable as possible without

pain and suffering. This descriptive qualitative study provides insight into caring for the dying

patient in the CCU and offers recommendations moving forward to prevent any pain and

suffering during the dying process.

Chapter one describes the ongoing problem of dying in the CCU and dying with dignity.

There is no clear and concise definition of dying with dignity as this chapter notes. While there

are fragmented definitions no true standard of dying with dignity can be found. This problem

was used to formulate the purpose of this study. The purpose of this descriptive

phenomenological study was to explore critical care nurses lived experiences of caring for the

dying patient in CCU. A research question was developed for this study asking:

 How do critical care nurses describe their lived experience of caring for the dying

patient?

Chapter two illustrated the literature search used to identify past and current studies to

support the lack of a solid definition for dying with dignity in the CCU. This chapter provided a

great deal of information about dying in multiple areas of the hospital but only minimal

information directly related to dying in the CCU. Using the data gathered from this literature

search a research study was formulated and discussed in chapter three.

106
 Chapter three discussed quantitative and qualitative research methods and

designs. The research question asks about the lived experience of the critical care nurse

while caring for the dying patient. Answering this question required the use of a

qualitative research method. The design used in this study was a descriptive

phenomenological study seeking the answer to the research question formulated for this

project. A series of interviews was conducted interviewing 12 critical care nurses. Three

broad questions were asked as well as probing questions seeking “in the moment”

answers to the interview questions.

Chapter four reviewed the research findings from this descriptive

phenomenological study. The research findings provided data for developing five

themes; communication, family, technology, lack of education, and dying with dignity.

Several subthemes were also developed from these themes providing greater detail to the

data collected in this study.

Chapter five provided recommendations that were developed from the data

collected while interviewing the critical care nurses. The recommendations targeted

nursing, medical, community education, as well as support from nursing leadership and

contributions of nursing practice. This study provides excellent data and

recommendations for further research moving forward. Using this study and building

upon it with future research could lead to new models of care for the dying patient and

dying with dignity in the CCU.

107
Reflection

This research journey was informative, eye-opening, and at times difficult. As a

novice researcher seeking to gain advanced knowledge and skills, this long journey

provided the means to gain these items. Countless hours were spent studying and working

to make this qualitative project success. Huddles had to be jumped, more than once

unfortunately. The initial project had a concept analysis process included with the

phenomenological research method. This was not considered doctoral level process and

had to be excluded from the proposal in order to move forward and work toward the

proposal approval. With that said, the hope is the concept analysis can be included in

future studies once this journey has been completed. This delay cost this research several

months and multiple revisions before proposal approval was given and permission was

obtained to begin the research study set for that proposal.

The International Review Board (IRB) process was another interesting process.

Only one IRB revision was required but the initial work of making sure the requirements

to protect the study participants was time consuming but an important step. Reviewing

the atrocities subjected on past research participants this process must maintain high

standards in order to project all research participants. Once this approval was

accomplished, testing the interview process was conducted with a pilot study. This pilot

study allowed the researcher to test the research process. Fortunately, no adjustments

were needed and the pilot study allowed the research a means of practicing and fine

tuning this study. Data saturation was met with the first nine study participants but three

more were interviewed to ensure that data saturation was met and to strengthen the

overall interview process.

108
 Using Colaizzi’s data analysis process proved to be an excellent tool to establish

the themes and subthemes that emerged from this study. Five themes and multiple

subthemes emerged and they were discussed in length through the final chapters of this

project. These themes were important to the study participants and this researcher and

this new found information will be the base for future studies planned by this researcher.

Hopefully, after gathering further data and emerging themes a model of care can be

developed and put into practice. That has been and still is something this researcher has

hoped to learn and plan to implement moving forward. Exploring the live experience of

the critical care nurse has been an adventure and something that would be done again.

109
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 Appendix A

INFORMED CONSENT: PARTICIPANTS 18 YEARS OF AGE AND OLDER

Dear ,

My name is Bruce Garwood and I am a student at the University of Phoenix working on a PhD
in Nursing degree. I am doing a research study entitled Nurse’s Perception of Caring for Dying
Patients in Critical Care: A Phenomenologic Study. The purpose of this proposed descriptive
phenomenological study is to explore critical care nurses lived experiences of caring for the
dying patient in CCU.

Your participation will include a semi-structured interview. The interview will be in a private
setting and digitally recorded. The interview process will take approximately one hour. An
estimated ten participants will be interviewed. Each participate can terminate his or hers consent
to be interviewed either before, during, or after the interview has been conducted. Any
information collected will then be destroyed and not use in the research study. You can decide to
be a part of this study or not. Once you start, you can withdraw from the study at any time by
contacting Bruce Garwood at bgarwood2@email.phoenix.edu without any penalty or loss of
benefits. The results of the research study may be published but your identity will remain
confidential and your name will not be made known to any outside party.
In this research, there are no foreseeable risks to you.
Although there may be no direct benefit to you, a possible benefit from your being part of this
study is an increase in nursing knowledge and a clear and concise definition of the concept being
studied. There are no costs to the participant taking part in this study.
If you have any questions about the research study, please call me at 219-608-0047 or email at
bgarwood2@email.phoenix.edu. For questions about your rights as a study participant, or any
concerns or complaints, please contact the University of Phoenix Institutional Review Board via
email at IRB@phoenix.edu.
As a participant in this study, you should understand the following:

1. You may decide not to be part of this study or you may withdraw from the study at any
time. If you want to withdraw, you can do so without any problems. To withdraw contact
the researcher at bgarwood2@email.phoenix.edu or call 291-608-0047.
2. Your identity will be kept confidential. Research results will be presented in aggregate
form.
3. Bruce Garwood, the researcher, has fully explained the nature of the research study and
has answered all questions and concerns.

131
 4. Interviews will be recorded for accuracy with your permission. The information from the
recorded interviews may be transcribed. The researcher will develop a way to code the
data to assure that your name is protected.
5. Data will be kept in a secure locked area. The data will be kept at the researcher’s home
for three years, and then destroyed.
6. The results of this study may be published.

“By signing this form, you agree that you understand the nature of the study, the possible risks to
you as a participant, agree to have the interview digitally recorded, and understand how your
identity will be kept confidential. When you sign this form, this means that you are 18 years old
or older and that you give your permission to volunteer as a participant in the study that is
described here.”

( ) I accept the above terms. ( ) I do not accept the above terms. (CHECK
ONE)

Signature of the research participant ____________________________________

Date _____________

Signature of the researcher ___________________________________________

Date _____________

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 Appendix B

Interview Guide

Demographic data:

Age of participant in years

20-29
30-39
40-49
50-59
60 and older

Years of Critical Care Experience

1-5
6-10
11-15
16-20
20 and more

Nursing Education (Highest degree earned)

ADN
BSN
MSN
MS/MA
PhD/DNP

Gender

Male
Female

Questions to be included in the interview

Primary Questions

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 What has been your experience caring for dying patients in the critical care setting?

What are your perceptions of dying with dignity in a critical care setting?

Can you describe a scenario where a patient experienced a death with dignity in the
critical care setting? A scenario where you did not feel the patient died with dignity?

Probing Questions

What other thoughts do you have about patients dying with dignity in critical care
units that we have not discussed?

Any other question that may arise from the responses of the participants of this study
will be included in the interview.

134