Research Study

Going on a journey: understanding

palliative care nursing
Alan Barnard, Christine Hollingum, Bernadette Hartfiel

the qualities and skills that arise from com-

passion, reciprocity, professional commit-
Abstract
ment, and the ability to communicate with
Aim To describe the qualitatively different ways a group of
patients and their families (Pusari, 1998).
Australian nurses‚ understood their experience of being a palliative
care nurse.
To this end, a study by Cohen et
al (2002) reported that palliative care
Design The research approach chosen was phenomenography.
nursing is believed by many nurses to
Fifteen nurses caring for people in a specialist palliative care unit in
be a distinct manner of practice that is
regional Australia were interviewed and transcribed interview data
were analysed in order to identify understanding of experience. dependent on the attributes of the person
who provides the care. However, despite
Findings The research identified and described five ways of
recognition of specific attributes related
understanding the experience of being a palliative care nurse:
doing everything you can; developing closeness; working as a
to palliative care nursing, it is practiced
team; creating meaning about life; and maintaining myself. in a range of environments and settings
including acute hospitals, hospices, nurs-
Conclusion The group of palliative care nurses involved in
ing homes and residential premises.
this research understood their experience as journeying with
their patients through the final phases of the person’s life. The Nebauer et al (1996) reports a grow-
journey involved the patient, his/her family and members of the ing move in palliative care away from the
healthcare team. The journey was described further as a process notion of merely ‘doing’ nursing tasks
of personal development which influenced how nurses construct for the patient to ‘being’ with the person.
meaning about life and maintain a sense of self. The experiences Being with expresses recognition of the
described reveal a great deal about palliative care nursing and need to assimilate and grow in a nurse–
provide useful knowledge and insights to assist practitioners, patient relationship. Further to this, a
managers and educators. study of palliative care domiciliary nurses
by Wright (2002) revealed that the relation-
ships were fundamental to the provision of

Alan Barnard is Senior
Lecturer, School of Nursing,
Queensland University
of Technology, Victoria
Park Road, Kelvin Grove,
Queensland, Christine
Hollingum is Nurse
Educator, and Bernadette
Hartfiel is Clinical Nurse
Consultant, Palliative
Care and Oncology Unit,
Ipswich Hospital, PO Box
73, Ipswich, Queensland,
Australia
Correspondence to:
Alan Barnard
Email: a.barnard@qut.edu.au
M
ost nurses work in a cost con-
straining and cure-orientated
healthcare system where the pri-
mary focus of nursing is perceived as task
orientated. A study conducted by Georges
et al (2002) found that nurses employed
in hospitals described their role as being
directed at finding solutions, coordinat-
ing the patient’s care and reporting infor-
mation to doctors about their patients.
This focus is demonstrated further by, for
example, the trend towards nurse–patient
dependency systems that measure the
tasks performed by nurses in their daily
work (Nebauer et al, 1996).
While it is clear that nurses need to be
competent in their assessment skills and
possess up-to-date knowledge and skills
related to providing treatment to allevi-
ate symptoms such as pain, nausea and
breathlessness, the care associated with
terminal illness demands, more than ever,
care. Nurses reported that the relationship
commenced at their first meeting with the
patient and their care developed through
open and honest communication.
In addition, a literature review con-
ducted by Bassett (2002) reported that
patients with a life-limiting illness were
surprisingly less often worried about per-
formance of tasks (their performance was
trustingly accepted as effective and appro-
priate), than they were for a desire for a
close and meaningful relationship.
Patients seek to share their fears, hopes
and expectations with nurses and this
places upon the receptive nurse many
emotional and physical demands. In
order to avoid being overwhelmed by
the demand for emotional support, some
nurses tend, at times, to create a dis-
tance by concentrating on the patient’s
symptoms and associated nursing tasks
(Georges et al, 2002). This response is

6 International Journal of Palliative Nursing, 2006, Vol 12, No 1

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 Going on a journey: understanding palliative care nursing
‘A “good” death predictable but it is worthwhile exam-
involves members ining how palliative care nurses experi-
ence their role given that these and other
of a healthcare
requirements of the role are associated
team working typically with it.
together. This It has been argued that palliative care
requires the team nurses desire to assist people to die with
to be able dignity, peace and comfort (Georges et
to communicate al, 2002; Taylor et al, 2002). A ‘good’
death involves members of a healthcare
well and develop
team working together. This requires
good rapport the team to be able to communicate well
and support and develop good rapport and support
for each other...’ for each other (Kristjanson et al, 2001).
Finding meaning in caring for peo-
ple with life-limiting illnesses involves
searching for meaning in nursing practice
and the experience of others. It requires
a lot from each person as they establish
relationships with people yet seek to
maintain a sense of self and balance when
dealing constantly with issues of life and
death and resolution of a nurse’s grief
(Davies et al, 1996).
This research has identified the experi-
ence of being a palliative care nurse and
provides insight into how a group of
nurses understood their role. It describes
the awareness of a journey that a group of
people took in their palliative care practice.
A journey of compassion, personal devel-
opment, teamwork and search for mean-
ing. The research outcomes are instructive
for anyone seeking to know more about
palliative care practice, when developing
plans to support palliative care nurses, and
for the education of future carers.
Phenomenography: a qualitative
appoarch for describing meaning
in health care
Phenomenography is a research approach
that maps the qualitatively different ways
people experience, conceptualize, perceive,
and understand various aspects of, and
various phenomena in, the world around
them (Marton, 1981). The major charac-
teristic of phenomenography is the desire
to capture awareness that is profound to
the experience of selected phenomena. The
approach seeks to describe the different
ways a group of people understand expe-
rience and to present the logical relations
between understandings (Marton, 1988;
Barnard et al, 1999).
Phenomenographers are interested in
the content of thinking. Understanding is
described in terms of what is both experi-
enced and thought about rather than the
process of perception. Phenomenography
International Journal of Palliative Nursing, 2006, Vol 12, No 1
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is a qualitative research approach that
describes variations in people’s experience
of phenomena through their own dis-
course. The ways of understanding expe-
riences are the principle theme of interest
(Bruce, 1997). Ways of understanding
experience are divided into discrete cat-
egories of description that capture the
meanings or conceptions of experience.
These logical relations between mean-
ings or awareness are identified and
described commonly as a diagram or
picture called an outcome space. The
outcome space is the formation of com-
plex meanings (called also conceptions
or categories of description) comprising
distinct groupings of aspects of the phe-
nomenon and the relationships between
them (Bruce, 1997; Barnard et al, 1999;
Bowden and Walsh, 2000).
Categories of description and out-
come space are the outcomes of phenom-
enographic research and serve as tools
to capture and communicate the ways
of understanding the phenomena under
investigation (Bruce, 1997; Svensson,
1997). The relations between meanings are
ultimately portrayed diagrammatically as
an empirical map (outcome space) of the
phenomenon under investigation (pallia-
tive care nursing).
Research method and analysis
Context, trustworthiness and data
collection
This research was conducted in a desig-
nated palliative care unit offering serv-
ices within a 317-bed regional hospital
in southeast Queensland, Australia. The
research design involved the collec-
tion of data from a convenience sample
of 10 nurses who had 1–30 year’s nursing
experience. Although a larger participant
size would have provided more data for
research, participants interviewed for this
research provided a richness of experience
and awareness. There are no strict crite-
ria for sample size in qualitative research
because research outcomes are contextual
(Patton, 1990). Rather than a focus on
population groups, as in quantitative stud-
ies, the focus is on context of experience.
Trustworthiness of the results achieved
is claimed as a result of expert application
of accepted methodology, method(s) and
clarity of results. Results arising from this
research inform us of the awareness of one
group of palliative care nurses and may
have application for nurses and healthcare
environments of a similar context.
7
 Going on a journey: understanding palliative care nursing
‘Nurses described Data collection took the form of an
a desire by patients audio-taped semistructured interview in
a quiet room using non-technical ques-
for honesty
tions. Each nurse was encouraged to
in answering reflect on his/her experience of being a
questions as well palliative care nurse.
as maintaining Questions were not aligned towards a
physical comfort particular perspective and required each
and dignity.’ participant to consider their experience
and understanding of being a nurse in the
palliative care environment. Typical ques-
tions were: ‘What was work like for you
today?’; and ‘What is your experience
with caring for people?’ The researcher
adopted hermeneutic principles to ensure
that the discourse revealed the nurse’s
experience in his/her own words rather
than through a negotiated statement
(Kvale, 1983). The aim was to bring forth
the interviewee’s awareness of his/her
own insights into the experience of nurs-
ing in a palliative care unit.
Analysis
Analysis of research data involved a
series of seven analytical steps described
previously as familiarization, condensa-
tion, comparison, grouping, articulating,
labelling, and contrasting (Dahlgren and
Fallsberg, 1991). Analysis involved the
comparison of interview transcripts to
focus upon the essential meaning of the
qualitative variations that took the form of
unfolding ways of understanding.
Ethical issues related to the research
Ethical approval to conduct the research
was granted by a large southeast
Queensland regional hospital. All nurses
interviewed had been employed in the same
palliative care unit for more than 1 year.
Participation in the research was voluntary
and each person understood they could
discontinue their involvement at any stage
without penalty. Although not required,
counselling services were made available
Table 1. Conceptions of palliative
care nursing
Conception one: doing everything you can
Conception two: developing a closeness
Conception three: working as a team
Conception four: creating meaning about life
Conception five: maintaining myself
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for any participant expressing a need to
discuss their experiences of palliative care
nursing with an additional person.
Ways of understanding palliative
care nursing
The researchers identified five ways of
understanding being a palliative care
nurse (Table 1). The conceptions describe
awareness based on the description of
participants. Each category of descrip-
tion (conception) thus reflects the ongo-
ing experience and relationship existing
between the participant(s) and the phe-
nomenon of palliative care nursing.
Conception one: doing everything
you can
Nurses need to meet the care require-
ments of each patient under their care in a
palliative care unit. Needs extend to pro-
viding hygiene care, comfort, symptom
management, pain relief and emotional
support for a patient and his/her family,
as one nurse explained:
‘..lets make this day the best day that
we can for you [patient], so if there is
something we can do for you we will.’
Nurses spoke of assisting the person to
maintain independence and control of their
life. Nurses described a desire by patients
for honesty in answering questions as
well as maintaining physical comfort
and dignity. Through open communica-
tion and symptom control, patients were
encouraged to achieve personal goals. As
a patient’s condition deteriorated nurses
assumed a more complete nurturing role
as one nurse noted:
‘...you come into the world rely-
ing on somebody to look after you,
to nurture you, to care for you, to
clean you, to basically do everything
for you and I’ve seen in the pallia-
tive care unit that as you deteriorate,
you, the patient, becomes more reli-
ant on you [nurse] for those exact
same things.’
Enhancement of the patient’s quality
of life was achieved through understand-
ing individual needs, good communica-
tion and being willing to accommodate
to those needs. As much as possible,
nurses strive to meet patients’ expecta-
tions about what care will be provided
and when it will happen.
 Going on a journey: understanding palliative care nursing
‘The closeness Conception two: developing a closeness
experienced Nurse–patient relationships in this pallia-
tive care environment tended to develop
was described
from the first visit to the palliative care
by participants clinic followed by the oncology unit (if
as “journeying” required), and progressed through sub-
with the patient. sequent admissions to the palliative care
During the unit. During these extended periods of
“journey” nurses time, nurses, patients and families shared
details about themselves as explained by
explained that
the following nurse who noted that:
they went through
the good times ‘As you get to know them, they
and the bad divulge certain things about their life
times.’ and you divulge, to a certain extent,
about yourself.’
Participants reported that they some-
times shared information with patients
about their lives and would, on occa-
sions, develop ‘deeper’ (personal) rela-
tionships with patients and their families.
Relationships were dependent on the
presentation of individuals with whom
they formed a rapport and the length of
time the person is known to the nurses
as explained by the following nurse who
revealed that:
‘…a patient we had here didn’t like
hospital food and all he talked about
all day was prawns. So I went to the
shop and bought him some prawns
and took them to work the next day.
It made his week, not his day, but his
week. It was just so nice. I get enjoy-
ment out of seeing a patient getting
such a thrill.’
The closeness experienced was
described by participants as ‘journeying’
with the patient. During the ‘journey’
nurses explained that they went through
the good times and the bad times. They
too experienced moments of joy and sad-
ness with their patients. The nurses ‘jour-
neyed’ with them. It was the patient’s
journey towards an unknown and the
goal was to comfort the patient and
his/her family so that they could cope.
Experience led you to know when to be
at the bedside, but also when to go:
‘…it’s not usually one person who’s
died who affects the whole ward, like
it usually affects different people.’
It was clear that the relationships
formed are intense and can draw nurses
sometimes into vulnerable and profound
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experiences. Participants described that
at the time of a patient’s death, there was
not only loss for the family, but also the
team recognized the nurse’s loss. Nurses
too go through a grieving process as a
result of relations formed with patients
and their families.
Conception three: working as a team
Collegial teams provide the care and sup-
port required by patients, their fami-
lies and nurses. Team members describe
the formation of collegial relationships
between members that are akin to that of a
family. As was expressed by the following
nurse who said:
‘...we are family in the sense that
the team that works here is really
extremely different personality types
and different ages and different
backgrounds and different experi-
ences and we all learn each day how
to co-exist better.’
A common experience was working
towards achieving the same goals for the
patients and their families. Collegiality was
achieved by caring for patients together,
discussing patient care and developing
goals to improve patient quality of life.
Individual respect for each team member
and their role in the overall care of patients
and their families was seen as a necessary
component to ensure the success of the
team. According to one nurse:
‘We discuss a lot of our patients with
each other and how we perceive dif-
ferent things that they’ve told us
and trying to work out how we can
improve their care. I think if we went
and did it individually then we’d
loose that uniqueness of palliative
care where we do work as a team to
come to the common goals on how
we’re going to help that patient.’
The palliative care nursing team, while
providing support and care for terminally
ill patients and their families, were an
integral component of the palliative care
nursing experience. The team provided
emotional support for each member.
Conception four: creating meaning
about life
Conception four concerned the way nurses
understand their experiences in relation to
life. Nurses expressed the belief that death
9
 Going on a journey: understanding palliative care nursing
Creating meaning
Maintaining
myself
Working as a team
Developing a closeness
Doing
everything you
can
Figure 1. The qualitatively different ways of understanding
the experience of being a palliative care nurse.
was a spiritual form of life as explained by
the following nurse:
‘I believe at the end there is some-
thing beautiful at the end of the
death process and that the person
that is lost is never far away.’
It was understood that personal values
and beliefs assisted nurses to create mean-
ing in their own lives. Without these values
and beliefs nurses stated that they would
find it more difficult to cope with working
in palliative care.
Working in palliative care affected per-
sonal attitudes towards life. Nurses
described experiences of heightened appre-
ciation for daily life (the normal and eve-
rydayness of being a person) and were
aware that this was made clearer through
their association with life-limiting illness.
Relationships with their own family and
friends were of great importance. The sim-
ple things in life had significance and mean-
ing while materialistic concerns had less
importance. The understanding is described
by the following participant who said:
‘…it teaches me to be grateful for
what I have and what I’ve done with
my life. It sobers me because I realize
that none of us know what tomor-
row may bring, so make the most
of what we have today as long as we
have it.’
Conception five: maintaining myself
Nurses described that in order to be able
to bring balance to their personal lives,
they needed to set boundaries in relation
to their work. Nurses expressed the need
10
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not to bring their work within the con-
fines of their own family relationships.
They were careful to try not to let their
experiences affect their life away from
work; however, this goal was not always
possible because sometimes a nurse
might, for example:
‘...go home and tell my husband
about patient things about the situa-
tion at work if I feel really sad.’
They described a need to seek/receive
support from colleagues whom they felt
had understanding of how they were feel-
ing. When overwhelming feelings of sad-
ness occurred nurses would cry at home or
would seek a close family member, friend
or colleague as described by the following
nurse who declared that:
‘…sometimes I go home and I’ll have
a good cry and feel a lot better or
just talk about the family member no
specifics but just my emotions and
my feelings, I find getting it off my
chest and being able to talk to some-
one and having a good cry makes me
feel a lot better.’
While experiences confirm a need to not
allow feelings of sadness into their per-
sonal relationships, it was clear that this
occurred as an experience of being a pal-
liative care nurse. There was description
of allocating time to reflect and remember
patients especially since nurses believed
that patients wished to be remembered
after they had died. They allocated time
to remember on the drive home from
work, or when they were sitting in their
garden or playing music. Although there
was awareness of a need for a personal life
and distance from their work, participants
explained patients who had died should
not be forgotten by a nurse.
The outcome space
An outcome space depicts the how (struc-
tural aspect) and what (referential aspect) of
experience and understanding. How life as
a palliative care nurse is experienced is por-
trayed structurally as hierarchical meanings.
Basic understanding or meaning begins
as conception one which is portrayed in
Figure 1 at the centre of the diagram.
More advanced understanding is situ-
ated outside conception one and builds
to an awareness that a palliative care
nurse needs to seek maintenance of self.
International Journal of Palliative Nursing, 2006, Vol 12, No 1
 Going on a journey: understanding palliative care nursing
‘...this research Participants described the need to find
describes ways to be an individual separate to
experiences their role as a palliative care nurse. They
allocated time for themselves and tried
that confirm to establish a personal life and distance
nurses’ awareness from their experience at work. Not every
of being drawn participant described every conception,
into intense but collectively the five conceptions were
and emotionally the qualitatively different ways the nurses
draining understood their experience(s).
Additionally, the first three categories
experiences of description describe experience as a
on repeated journeying with the patient during the
occasions with final phase(s) of the patient’s life, while
patients and their the fourth and fifth category of descrip-
families.’ tion relates to the journey of being a pal-
liative care nurse. They speak about the
life journey of the palliative care nurse.
The referential aspect depicted in the out-
come space (see Figure 1) describes the
phenomenon as a life’s journey.
Palliative care nurses journey with
patients and families during the final
phases of life and develop different rela-
tionships within their professional role.
They formed what could be described
as traditional caring nurse–patient rela-
tionships that, on occasions, led to closer
relationships with people. Being a pallia-
tive care nurse was associated with chal-
lenging yet positive changes to the lives
of each participant. Nurses with more
advanced insight into their experience
described the need to separate their per-
sonal journey from the journey(s) experi-
enced in their professional life.
Discussion
This study highlights how one group
of palliative care nurses described their
understanding of being a palliative care
nurse. Palliative care nursing crosses spe-
cialist boundaries that include oncology
units, acute hospitals, hospices, nursing
homes and the community. Within these
contexts research has highlighted the
need for nurses to be competent in their
assessment skills and maintain knowledge
and skills related to alleviating symptoms
such as pain, nausea and breathlessness.
Personal characteristics such as compas-
sion, commitment and the ability to com-
municate with people and their families
have been found to be equally important
characteristics of a palliative care nurse
(Pusari, 1998).
This research confirms the views of
Bassett (2002) who demonstrated that both
nursing tasks and meaningful relationships
are central to the palliative care experience.
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This research describes understanding that
emphasizes experiences associated with
‘deeper’ relationships that can, and do,
develop between nurses, patients and fam-
ily members. While such relationships can
often be beneficial for patients, they can,
and probably do, have repercussions for the
nurse (Plante and Bouchard, 1995; Barthow,
1997; Vachon, 1998; Bassett, 2002).
Nurses distance themselves from unfa-
miliar or threatening situations by con-
centrating on nursing tasks in order to
avoid being overwhelmed by emotions
when working in palliative care (Georges
et al, 2002). However, this research
describes experiences that confirm nurses’
awareness of being drawn into intense
and emotionally draining experiences on
repeated occasions with patients and their
families. This finding is important for the
practice of nurses. Other studies have
confirmed that a clinical environment that
is perceived to be supportive and assist
nurses to cope with emotional exhaustion
and prevent burnout is important (Garret
and McDaniel, 2001).
Research by Webster and Kristjanson
(2002) support the findings of this qualita-
tive study with respect to description of
the importance of the palliative care team
and collegial support during the delivery
of complex care for patients. Participants
in this research described the importance
of a coherent and supportive team in assist-
ing healthcare workers to bring balance to
their personal and professional lives.
It is clear that nurses described intense
loss on numerous occasions and that
the fifth conception, or level of aware-
ness, highlighted by the research proc-
ess describes a need to maintain self as an
experience of being a palliative care nurse.
There are many implications that could
arise from this work especially for nurses
in similar contexts of practice. Based on
the experiences described by participants
in this research, it is reasonable to suggest
that if other palliative care nurses have sim-
ilar experiences, then the following three
recommendations could be considered:
● There is need for stable staffing envi-
ronments in palliative care units. A
cohesive and supported team is essen-
tial for the wellbeing of patients, their
families and the nurses working in the
environment. Although most healthcare
contexts rely on interdisciplinary and
specialst teams, Webster and Kristjanson
(2002) further confirm that the team-
work experience of people working in a
11
 Going on a journey: understanding palliative care nursing
‘There is a need palliative care setting is fundamentally
for regular important and is replicated rarely in
other contexts of health care.
team meetings
● There is a need for regular team meet-
to facilitate ings to facilitate discussion and man-
discussion agement of difficult situations and to
and management debrief in a supportive environment.
of difficult The strategy will encourage cohesive-
situations ness and individuals can learn from each
other and facilitate support.
and to debrief
● While this research described partici-
in a supportive pants’ experiences of supporting each
environment.’ other, they also described dependence
on colleagues for emotional support
during difficult times in their work. The
experience has some similarity to the
findings of Fisher (1996) who explained
loss and grief felt by nurses working
in a palliative care environment as pro-
fessional bereavement. As argued by
MacKereth et al (2005), there may be
a role for counsellors and relaxation
therapies to assist staff when they feel
overwhelmed by situations or when
experiencing feelings of grief and loss.
Conclusion
This article reports on phenomenographic
research that described the palliative care
experience of 10 nurses. The research iden-
tified five conceptions of experience that
are related logically and able to be por-
trayed as an outcome space. The experience
revealed the complex nature of the palliative
care experience. There is a need for greater
recognition of the intense, yet potentially
rewarding, experience of palliative care prac-
tice when support guidance and maturity of
understanding are the benefit of the envi-
ronment of care. The experiences described
by nurses involved in this research are of
benefit for understanding and developing
the discrete area of practice that is associated
with caring for the terminally ill.
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Key words
● Palliative
● Nursing
● Phenomenography
● Experience
● Clinical practice
International Journal of Palliative Nursing, 2006, Vol 12, No 1