E N D O F LI F E A N D P A L L I A T I V E C A R E

Thoughts on death and dying when living with haemodialysis

approaching end of life
Lena Axelsson, Ingrid Randers, Carina Lundh Hagelin, Stefan H Jacobson and Birgitta Klang

Aims and objectives. To describe inner thoughts and feelings relating to death and dying when living with haemodialysis
approaching end of life.
Background. Patients who undergo maintenance haemodialysis suffer a significant symptom burden and an impaired quality of
life. The high mortality rate in these patients indicates that about one-fourth of them are in their last year of life, suggesting the
presence of death and dying in the haemodialysis unit.
Design. A qualitative descriptive design was used.
Methods. A total of 31 qualitative interviews were conducted with eight patients (aged 66–87) over a period of 12 months.
Qualitative content analysis was used to analyse data.
Results. The analysis revealed 10 subthemes that were sorted into three main themes. Being aware that death may be near
comprises being reminded of death and dying by the deteriorating body, by the worsening conditions and deaths of fellow
patients, and by knowing haemodialysis treatment as a border to death. Adapting to approaching death comprises looking upon
death as natural, preparing to face death, hoping for a quick death and repressing thoughts of death and dying. Being alone with
existential thoughts comprises a wish to avoid burdening family, lack of communication with healthcare professionals and
reflections on haemodialysis withdrawal as an hypothetic option.
Conclusions. Living with haemodialysis approaching, the end of life involves significant and complex existential issues and
suffering, and patients are often alone with their existential thoughts.
Relevance to clinical practice. Nurses and other healthcare professionals in haemodialysis settings need to combine technical
and medical abilities with committed listening and communication skills and be open to talking about death and dying, with
sensitivity to individual and changeable needs.

Key words: death, dying, end of life, end-stage renal disease, haemodialysis, qualitative content analysis, qualitative interviews,
serial interviews

Accepted for publication: 26 February 2012

renal transplantation, is increasing worldwide (Eggers 2011).

Introduction
The number of patients with ESRD on maintenance hae-
End-stage renal disease (ESRD) (stage 5 chronic kidney modialysis treatment (MHD) is growing in western society.
disease), which requires treatment with lifelong dialysis or Annual mortality rates in these patients are about 20–25%

Authors: Lena Axelsson, RN, Doctoral Student, Sophiahemmet
University College and Division of Nursing, Department of
Neurobiology, Care Sciences and Society, Karolinska Institutet;
Ingrid Randers, RNT, PhD, Senior Lecturer, Sophiahemmet
University College and Division of Nursing, Department of
Neurobiology, Care Sciences and Society, Karolinska Institutet;
Carina Lundh Hagelin, RN, PhD, Senior Lecturer, Sophiahemmet
University College and Department of Learning, Informatics,
Management and Ethics, Medical Management Center, Karolinska
Institutet; Stefan H Jacobson, MD, Professor, Department of
Nephrology, Karolinska Institutet and Danderyd University
Hospital; Birgitta Klang, RNT, Associate Professor, Division of
Nursing, Department of Neurobiology, Care Sciences and Society,
Karolinska Institutet, Stockholm, Sweden
Correspondence: Lena Axelsson, Doctoral Student, Sophiahemmet
University College, Box 5605, Stockholm 11486, Sweden.
Telephone: +46 70 848 93 08.
E-mail: lena.axelsson@shh.se

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L Axelsson et al.
(SNR 2010, USRD 2010), indicating that about one-fourth
of patients on MHD are in their last year of life. This
enlightens the presence of death and dying in the haemo-
dialysis unit.
Background
Earlier studies stress the impaired quality of life (Kimmel &
Patel 2006, Davison & Jhangri 2010) and significant symp-
tom burden (Davison et al. 2006, Saini et al. 2006, Murtagh
et al. 2007) that patients undergoing MHD suffer because of
uraemia and the effects of dialysis. Frequently described
symptoms are lack of energy, decreased appetite, nausea,
pain, pruritus, shortness of breath, sleep disturbances, anx-
iety, muscular cramp and dizziness (Weisbord et al. 2004,
2005). Comorbidities such as diabetes, cardiac disease,
cerebrovascular disease and peripheral vascular disease add
to the symptom burden and the complexity of the suffering
(Weisbord et al. 2003, 2005). Mortality rates are due largely
to comorbidities, with cardiovascular disease causing about
45% of deaths in patients on MHD (SNR 2010). The mean
age of patients undergoing MHD is rising (SNR 2010, USRD
2010), which further decreases life expectancy in this
population. Withdrawal of dialysis treatment precedes about
13% (SNR 2010) to 25% (Germain & Cohen 2008) of
deaths in patients with MHD and results in an average
remaining survival time of eight days (Cohen et al. 2000a,b).
Withholding or initiating withdrawal from dialysis (Cohen
et al. 2000a, Cohen & Germain 2005) has been the focus of
palliative care for patients with ESRD. However, the ageing
patient population with their complex symptoms and com-
orbidities has raised awareness of the need to integrate
palliative care approach earlier in nephrology care and for a
longer time (Young 2009, Kurella Tamura & Cohen 2010,
Harrison & Watson 2011). Implementation of the philoso-
phy of palliative care in the haemodialysis unit, with active
care for the whole person, has also been put forward as many
patients suffer from continuous deterioration (Madar et al.
2007).
An earlier study (Axelsson et al. 2012) on the meanings of
being severely ill living with MHD at the approach of end of
life elucidates complexities and intertwined meanings when
the deteriorating body influences life more and more, and
patients are enduring a restricted and heavy life for the
possibility of living a bit longer. Being severely ill living with
MHD means facing progressive losses and threats, and
findings elucidate suffering in physical, psychosocial, emo-
tional and existential dimensions. Findings showed the
importance of knowing the patients’ own understanding of
their illness and situation and underpin the importance of
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whole person care in their hovering between living in the
present and worrying about the future, that is facing death
(Axelsson et al. 2012).
Existential issues have also been described in other studies
of patients’ experiences of MHD. It has been interpreted as a
continuous struggle to maintain hope of a normal life while
dealing with an uncertain future, with questions of meaning
and how much time there is left (Gregory et al. 1998). MHD,
as a deficient lifeline, has also shown to be a persistent
reminder of a limited lifetime (Hagren et al. 2001). The
changed life situation experienced by patients undergoing
MHD, in the dimensions of time and space, has also been
described as an existential struggle (Hagren et al. 2005), and
patients on MHD have been found to fight for personal
preservation while acknowledging the nearness of and
awaiting a certain death (Calvin 2004).
In the dialysis unit, the nurse cares for patients who have
several chronic progressive and life-threatening illnesses and
they suffer from a high symptom burden. Furthermore, these
severely ill patients maintain life by advanced medical
technology that also raises existential issues. The presence
of death in the dialysis unit has come forth, and to better
understand and improve care for severely ill patients treated
with MHD, we need more knowledge about their experiences
and increase our understanding of their thoughts and feelings
relating to death and dying when they are approaching end of
life.
Methods
Aim
The aim of this study was to describe inner thoughts and
feelings relating to death and dying when living with
haemodialysis approaching end of life.
Design
A qualitative descriptive design with an inductive approach
was used.
Participants and setting
This study is part of an ongoing study intending to increase
the understanding and knowledge of end-of-life issues in
severely ill patients living with MHD. In a first study
(Axelsson et al. 2012), the meanings of being severely ill
living with haemodialysis were described, while the present
study seeks for a deeper understanding of thoughts and
feelings relating to death and dying.
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End of life and palliative care
Eight severely ill adults with ESRD, five men and three
women, participated (previously described in Axelsson et al.
2012). They were selected with purposive sampling for
variation in comorbidities, sex and family situation. The
participants were recruited from four dialysis clinics, two in
university hospitals and two smaller dialysis satellites in an
urban area of Sweden. Participants were clinically assessed as
severely ill and therefore possibly in their last year of life, by
the nephrology physician and the registered dialysis nurse
responsible for their dialysis treatments. For this study, we
define this as approaching death. The assessment was based on
the presence of comorbidities, malnutrition and other com-
plications. Inclusion criteria were also to have been treated
with haemodialysis for at least three months, not to be listed
for kidney transplantation, and to be able to read, write and
speak Swedish. In addition to kidney disease, the participants
had a multiplicity of comorbidities, including cardiac disease,
peripheral vascular disease, previous stroke, diabetes and
cancer. Most participants had several comorbidities.
At the time of inclusion, five participants lived with a
spouse and three lived alone. All lived at home and received
haemodialysis as outpatients. Their ages ranged from
66–87 years (mean = 78). They had received MHD from
15 months to just over seven years.
Ethical considerations
Dialysis nurses gave selected patients a letter about the study
including an offer to meet the researcher for additional
information. Before giving written consent to participation,
all participants received further information, both written
and verbal, describing the aim of the study, the voluntary
nature of their participation, their right to discontinue at any
time and the confidential treatment of data. These severely ill
participants narrated their thoughts and feelings, which
required the researcher to be thoughtful and sensitive during
interviews. The study was approved by the Ethical Review
Board Stockholm, Sweden.
Data collection
Data were collected for the study using qualitative serial
interviews during 2007–2008. Six of the participants were
followed according to the plan with four interviews over
12 months. One participant was interviewed five times,
because one interview was interrupted. Owing to family
matters, one participant was interviewed twice. The partic-
ipants were encouraged to talk freely about their experiences
of being ill and living with MHD. The interviews began with
the open-ended question (Kvale & Brinkmann 2009): ‘Please
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Thoughts on death and dying
tell me your experiences of living with illness and haemod-
ialysis’. Open and clarifying questions invited participants to
talk about different dimensions and thereby their thoughts
and feelings relating to death and dying. The first author
conducted all 31 interviews on days when the participant was
free from dialysis. Most interviews (26) took place, according
to the participants’ wishes, in the participants’ homes, but
five were conducted at a nursing home or on a hospital ward.
The interviews (33 hours in total) were audiotaped and
transcribed verbatim.
Data analysis
Qualitative content analysis was applied when analysing the
data (Graneheim & Lundman 2004). The interview texts
were read several times to grasp the overall content.
‘Meaning units’ (i.e. parts of sentences, sentences or para-
graphs each containing a meaning) corresponding to the aim
of the present study were then identified, and the extracted
text (i.e. meaning units relating to death and dying) was then
condensed and coded. The coded units were re-read,
compared, interpreted and when appropriate re-combined.
Thereafter, they were abstracted and sorted into subthemes
and themes of underlying meaning (Graneheim & Lundman
2004). To gain a deeper understanding during the analysis,
meaning units of all interviews of each participant were both
compared over time and analysed as a whole. The analysis
process is described as linear, but there was a movement,
back and forth, between the described steps of the analysis.
The software Open Code (2007) was used in the process of
coding to more easily gain an overview of the data through
printing lists of the coded units.
Results
When living with MHD and approaching the end of life, the
presence of death was multifaceted. Patients’ thoughts and
feelings about death and dying were complex, and they
fluctuated, both during and between interviews, as existential
issues and needs are intertwined with experiences in physical,
social and psychological dimensions.
The findings were formulated as 10 subthemes and three
themes, which are presented in Table 1 and illustrated in the
text with representative quotations from the interviews. To
communicate and illuminate the participants’ inner thoughts
and feelings, quotations are presented as poems. The
technique we used means that the words are still presented
verbatim, but the text is divided into lines when semantic
features as pauses and hesitation appear (cf. Edvardsson et al.
2003, Öhlén 2003, Lindqvist et al. 2006, Schuster 2006).
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Table 1 Subthemes and themes you think

what will happen to me
Subthemes Themes
what will the end be like
Being reminded of death and dying Being aware that that’s on your mind
by the deteriorating body death may be near
Being reminded of death and dying by the The state of very ill fellow patients had different meanings
worsening conditions and deaths depending on the participant’s own condition. One partici-
of fellow patients
pant described that in comparison with some other patients,
Knowing dialysis treatment as a
border to death
he thought that he himself had managed well, which made
Looking upon death as natural Adapting to him feel stronger. However, later, when he was more ill, he
Preparing to face death approaching death expressed distress about seeing others’ worsening conditions.
Hoping for a quick death The number of deaths among fellow patients raised internal
Repressing thoughts of death and dying questions about what was happening and whose turn would
Wish to avoid burdening family Being alone with
be next. This also contributed to fears about going to hospital
Lack of communication with existential thoughts
healthcare professionals because of an acute condition. One participant described his
Haemodialysis withdrawal as a feelings when a fellow patient had died:
hypothetical option
Death came closer
you know
Being aware that death may be near since I’d come to the dialysis ward two had died
and this was the third one
Being aware that death may be near involved being reminded
so then
of death and dying by the deteriorating body, by the
it sort of reminds you of approaching something
worsening conditions or deaths of fellow patients, and by
I don’t usually think of it
knowing MHD as a border to death.
but when you get this kind of reminder
The participants were aware that death might come soon.
how fast it may go
Their progressively deteriorating bodies reminded them of
then you think it over
their approaching death, and some types of pain seemed
and wonder how long you will last
especially to involve a threat of imminent death. Relief of
pain and other symptoms was comforting and allowed some The closeness of death was also expressed by descriptions of
distance from death, although they were aware that manag- MHD as a border between life and death, sometimes
ing symptoms did not necessarily imply a longer lifetime. Old apparent in the body between dialysis treatments. Some
age in itself also raised awareness of approaching death. participants said that death had become a threat already
when informed of the necessity of MHD, and they had not
Sometimes I think
expected to live as long as they had.
well
is this the so-called final journey
Adapting to approaching death
if I travel by ambulance to the hospital
Adapting to approaching death involved looking upon death
or
as natural and preparing to face it, but also hoping for a
how will it feel
quick death and repressing thoughts of death and dying.
I am also so old
The older participants looked upon death as something
that I know
natural for the old and ill. Thus, death was described as an
that there are many who can’t make it this far
inevitable part of everybody’s life, and that they had lived
The participants described how the worsening conditions and their lives.
deaths of fellow patients at the dialysis clinic reminded them
It is not that strange
of their own vulnerable situation and caused them to wonder
actually
about the end of life and death.
that a person passes away
You see other patients on the dialysis ward who have problems who is ill
you notice how they deteriorate
Feelings of living too long and living a prolonged life were
and
also described, but at the same time, participants wanted to
you hope that it won’t last long

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End of life and palliative care
live longer, and thinking of death as normal still involved
sadness.
Participants used different ways to prepare to face death.
Reading the obituary notices to compare ages emerged as a
way of handling uncertainty through looking for clues, but
was also part of reconciling with approaching end of life.
Participants reflected on what the cause of death would be
considering all their comorbidities, when and how death
would come, and what dying would be like. On the other
hand, participants also said that there was no meaning in
trying to figure out death.
Well it isn’t this week anyway
I think
but
but sometimes I have to
I realize that
that it will happen one day
and then I wonder which day
will be the one
when I can’t walk
when I get an infection they can’t find
when the medicine has no effect
and then maybe they will lose interest in doing anything
and
well
I can’t do much about it
I hope it won’t be too drawn out
Participants appeared to fear the end of life more than death
itself. Their hopes for a quick death seemed to be connected
to their uncertainty about end of life and dying. They feared a
drawn-out end of life totally incapacitated and dependent on
others. There was also a sincere wish to live at home until
they died a sudden death.
That is what I fear the most
becoming totally dependent on others
that is the worst
yes the best would be to drop dead
I think
A sudden death was acknowledged as more difficult for the
family, but one participant reflected that death now would
not be sudden in the meaning of unexpected because the
family must have noticed his weakening condition. Although
they hoped for a quick death, the chance of it happening was
also a threat, as hoping for a quick death was not the same as
wanting to die soon.
Two participants thought they had already experienced
what death is like. Therefore, they did not fear the moment of
death, because they now thought of death as falling asleep.
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Thoughts on death and dying
Moreover, all their children had been present when they
woke up from unconsciousness, which was also reassuring.
I have experienced it so I know it
what it is like to pass away
so I am not afraid of dying
you just fall asleep
Repressing thoughts of death and dying was another way to
handle distress and sorrow when approaching the end of life.
Living was easier without the burden of thinking of death,
even if death was considered as natural.
No
one definitely must not think about it
that one will die
no
one definitely should not do that
I: What is your thinking?
No
if I were to go around and think of dying
then
then it would be terrible
no
I don’t do that
Repressing thoughts of dying emerged as a way to distance
and postpone death, not as denial, but as a way to focus on
living. Instead, participants turned their thoughts towards the
good things in life.
Being alone with existential thoughts
Being alone with existential thoughts involved to avoid bur-
dening family, lack of communication with healthcare pro-
fessionals and reflections on MHD withdrawal as a
hypothetical option. Participants found it difficult to talk
about their thoughts and feelings concerning death and dying.
They did not want to burden their family additionally with
their existential thoughts. They thought their family did not
want to talk of death, and some described their family as
afraid. Some participants had tried to talk about end of life
and death, but felt that their concerns were pushed away.
Therefore, they kept existential thoughts to themselves, and
everyday life was carried on trying to be as usual. Participants
also described not knowing how to deal with this complex
situation.
Well I don’t know if
if maybe one should prepare oneself for
for the future
and perhaps prepare others as well
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I don’t know
I am not quite sure about how to deal with it
sometimes I think to myself about it
but
I probably can’t speak to anyone else about it
Participants’ need to talk about existential issues, fears and
uncertainties varied over time with complications or critical
events. They also described hesitation and uncertainty about
talking to healthcare professionals about death and dying and
found it difficult to bring up existential topics. The impor-
tance of trust and continuity was described. The significance
of talking to the right person and of healthcare professionals
showing interest was emphasised. One participant described
not knowing whether the care professionals were cowards or
considerate when they avoided talking of his vulnerable
illness situation. Participants also thought that the care
professionals had other things to attend to. Another reason
not to open up was a fear that care professionals would be
careless with thoughts and sentiments revealed in confidence.
Participants described not having anyone to talk to about
existential thoughts. Having to manage those thoughts alone
was attributed partly to the feeling that nobody would
understand.
When a fellow patient had died, the atmosphere in the
haemodialysis unit was described as silent. Usually the nurses
answered the direct question of whether a patient had died,
but they were reluctant to talk further. The participants said
that they understood that the nurses were not allowed to tell
them about their fellow patients, but still, when they thought
of the dead patient as a friend with whom they had talked
and laughed during dialysis, it was hard.
Being alone with existential thoughts also involved reflec-
tions on MHD withdrawal. Some participants appeared to
want to know more about death by withdrawal but feared
that bringing up the topic might be understood as wanting to
discontinue dialysis treatment. Withdrawal was also de-
scribed as a delicate matter that could be provocative if raised
by healthcare professionals. One participant described when
he had tried to talk to a nurse about dialysis withdrawal:
I asked what will happen if I quit this
he just looked at me
you’ll die
he said and left
well that I knew
I thought to myself
Participants had various conceptions about MHD with-
drawal, including that it involved a death in agony. One
participant thought that withdrawal was not permitted
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because ‘physicians are not allowed to put somebody to
death’.
Death by MHD withdrawal did not emerge as a real
alternative for the participants. Some had reflected on the
possibility, as a hypothetical option in a different family
situation or if they became totally dependent on care.
Sometimes I can reason that if I did not have a wife who is strong and
able
and children and grandchildren
if I did not have family and all
then maybe I would have discontinued dialysis
simply ended
You want to go to the toilet, take a shower, wash yourself, brush
your teeth
and all those sorts of things you always do
and if I couldn’t do those things
then that would
that would probably be the end
and then I could imagine
I could imagine to discontinue dialysis
because I don’t want to
I don’t want to be totally dependent on care
The hypothetical criteria for MHD withdrawal as an option
changed over time. Also views of withdrawal could change.
One participant did not consider MHD withdrawal an
alternative, as he wanted to hold on as long as possible.
Yet later, as he lost more and more control over his
deteriorating body, he reflected on dialysis withdrawal as a
possibility one day. Another participant, who in the first
interview, reflected on withdrawal as a hypothetical option,
when more ill and closer to death, then instead thought of
MHD withdrawal as suicide. Length of life seemed to have
more value when he was closer to death, in spite of the
increased dependence he had earlier feared. He did not want
to leave this life or his family. On the other hand, even if
withdrawal was not considered an option, some participants
reflected on the value of prolonging life vs. maintaining well-
being at the end of life, and postponing death was not always
regarded as crucial. One participant described her agony
when she suffered from restrictions:
The question is whether I draw out a few months more or less
of the time that I have left
that is in my condition
see
I don’t know how to express it but
but for me it is almost better to die
than to be suffering this way
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End of life and palliative care
Narratives revealed ambivalent thoughts and feelings about
life and death in patients suffering from illness and a
deteriorating body in pain.
In a way I don’t want to live any longer see
with this that I know
that I will not get well again
but on the other hand
one doesn’t exactly want to die either
Discussion
This qualitative study focused on the inner thoughts and
feelings about death and dying in severely ill patients living
with MHD approaching end of life. Participants were aware
of their approaching death, but lived with the uncertainty of
how and when it would happen. While they focused on
living, their narratives reveal that thoughts of death and
dying were never far away. The presence of death is
multifaceted and intertwined with other dimensions of life,
and existential thoughts and feelings may fluctuate or change
over time. Moreover, the individual perspective, depending
on experiences, values and age, is vital.
Older participants thought of death as natural and that
life had to end at some point. Participants feared the
uncertain end of life more than death itself. Their evident
fear of a prolonged end of life when being totally dependent
on others agrees with results of other studies of older
peoples’ views of death (Hallberg 2004, Ternestedt &
Franklin 2006, Gott et al. 2008). Participants in the present
study expressed hopes for a sudden or quick death. This
may be interpreted as a wish to escape progressive losses
and suffering as they are facing threats of complications,
and of losing control, sense of self and dignity (Axelsson
et al. 2012). Our data indicate that also a worsening
condition and dying process of fellow patients caused fears
about the participant’s own end of life. A preference for
sudden death in older people with heart failure was
discussed in terms of maintaining personhood until death
and avoiding the process of dying, which coincides with
present findings (Gott et al. 2008).
Our findings indicate that adapting to approaching death
and thinking of death as natural also involved repressing
thoughts of death. This seemed a way to distance sorrow and
death, to focus on living and to enjoy life, as also described by
Calvin (2004) in a theory of personal preservation in patients
on MHD treatment. Repressing thoughts of death shows a
will to live (Gadamer 2003). On the other hand, Hallberg
(2004), in a study of older people, discusses pushing away
death in relation to a taboo of talking about it. In the present
study, participants also pushed away thoughts of death when
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Thoughts on death and dying
they were unable to talk about it. Still, even when partici-
pants focused on living, death was always nearby. This may
be interpreted as patients maintain a subtle balance between
recognising approaching death and recognising remaining life
(Hallberg 2004).
The participants’ wish to focus on living was also shown by
their reflections on withdrawal of MHD as a hypothetical
option, but not as a real alternative. Findings indicate that
attitudes towards withdrawal and circumstances for consid-
ering it may change over time. This changeability, along with
participants’ lack of knowledge and fears of being misread if
they ask about withdrawal, highlights the importance and
challenges of attentive listening and communication with
patients.
Participants in the present study did not want to burden
their family additionally with their existential concerns. Their
desire to protect their family by not speaking of their worries
and fears, however, left them facing the existential loneliness
also described in patients with other diseases approaching the
end of life (Sand & Strang 2006, Ek & Ternestedt 2008).
Being alone with existential thoughts involved lack of
communication with healthcare professionals and difficulties
raising existential topics. Participants’ hesitation is in line
with other studies showing that patients often wait for care
professionals to initiate talks about death and dying (Davison
2006, Davison & Simpson 2006). Our findings indicate that
patients want more communication concerning end of life, as
shown also by Berzoff et al. (2008).
Unrecognised existential needs have earlier also been
reported in patients with cancer and heart failure (Adelbratt
& Strang 2000, Murray et al. 2004). Obstacles to existential
support were described as healthcare professionals’ stress,
fear and lack of knowledge (Strang et al. 2001). This is in line
with the present findings where participants described care
professionals’ lack of interest, avoidance and attention to
other priorities in relation to communicating about existen-
tial issues. Participants also said that it was difficult for others
to understand their situation, which may be another reason
not to talk of existential matters.
Participants’ thoughts on death show that they lived with
awareness of that death may be near. Their awareness seemed
to be based on signs and inferences rather than on open
communication with healthcare professionals. Findings illu-
minate that awareness may be consistent with repressing
thoughts on death to focus on living. Thoughts were also
repressed of consideration to family members or because of
healthcare professionals’ behaviour, which may also obstruct
communication on existential issues and add to patients’
existential loneliness. The significance of the interaction
between the person approaching end of life and those around
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him, both family and professionals, is illuminated by Glaser
and Strauss (1965) in the theory on awareness of dying. Their
theory on communication on death and dying, still of clinical
relevance (Andrews & Nathaniel 2009), describes the signif-
icance of behaviour and communication for the experience of
end of life (Glaser & Strauss 1965).
The unpredictable course of dying in patients with heart
failure made nurses in palliative care consider it difficult to
talk about death (Brännström et al. 2005). This may also be
an impediment in haemodialysis care as death is often
unpredictable and uncertain. However, this could be a
challenge rather than an obstacle to nurses in haemodialysis
units as the individual need of the patient, living with a
multifaceted presence of death, should direct communication,
and nurses should be attentive to fluctuating needs in their
unpredictable and uncertain course of dying. Findings indi-
cate that living with a deteriorating body, a high symptom
burden and dependence on advanced medical technology
involves existential issues and suffering, and patients are
often alone with their existential thoughts. Difficulties
expressing and sharing their suffering indicate increasing
vulnerability in patients with life-threatening illness (Öhlén
2000) whose existential suffering could be alleviated if it were
acknowledged (Öhlén 2000).
Conclusion
Thoughts and feelings relating to death and dying are
significant and complex for persons living with MHD
approaching the end of life. Participants lived with the
awareness of approaching death but in uncertainty of how
and when. Adapting to approaching death included
repressing thoughts of death to focus on living the time
left. Participants were alone with existential issues, which
varied in intensity as they are intertwined and fluctuate
with other dimensions of life. Findings indicate that it is
important for these patients to be able to talk about
existential issues to someone who will listen and that this
need may vary both with the individual and with circum-
stances over time.
Relevance to clinical practice
Healthcare professionals in haemodialysis settings need to
combine technical and medical abilities with committed
listening and communication skills. They need to address
existential thoughts and feelings, as well as physical and
psychosocial issues, and offer opportunities to talk about
death and dying, with sensitivity to individual and change-
able needs. Asking patients about their thoughts for the
2156
future is one way to open a conversation that might include
existential topics, and it allows the patient to decide the
appropriate timing. It is also important to create a
supportive relationship of safety and trust with patients
and to take an interest in their subjective perspective and
their whole person. Maintaining life with haemodialysis
treatment involves a responsibility to aim for the patient’s
well-being when approaching end of life. Thus present
findings forward that an integration of the palliative care
philosophy in haemodialysis units could assist in improving
care of these severely ill patients, as the philosophy
acknowledges death as part of life, while still recognising
life and aiming for well-being until life has ended (Saun-
ders1978, WHO 2002).
Methodological considerations
A weakness of the study may be that participants were
included according to clinical assessments of severe illness,
but on the other hand, clinical assessment of patients will also
be used to implement the findings in clinical practice. In a
chronic progressive disease, it may be difficult to know when
end of life begins but participants’ narratives show that they
thought of life as closing down and of approaching death,
which adds to credibility. The purposive sampling, that is
choosing participants of various gender, family situation and
comorbidities from four different dialysis clinics thus with
various experiences, also contributes to credibility. Interviews
(31) over time yielded richness of data. As the participants
were severely ill with progressive chronic diseases, the
longitudinal approach also increased the possibility of iden-
tifying changes and variations and thus increased the under-
standing. This strengthens the findings in relation to the
number of participants. Repeated encounters in interviews
over time facilitated conversations on existential issues,
which also contributed to richness and credibility. Three of
the authors read the interviews, and after open and reflective
discussions, we agreed upon subthemes and themes. The
authors’ different preunderstandings of the phenomenon
under study contributed to critical reflections and analysis,
which add to credibility and thus trustworthiness (Graneheim
& Lundman 2004). The methodological analysis together
with representative quotations further contributes to trust-
worthiness. Presenting the quotations as poems (i.e. we
divided the verbatim text into lines) (i.e. Edvardsson et al.
2003, Öhlén 2003, Lindqvist et al. 2006, Schuster 2006) is a
method to communicate and read participants’ quotations
more slowly and thereby more deeply and thus being more
sensitive to participants and their narratives as how it is
spoken contributes to understanding.
Ó 2012 Blackwell Publishing Ltd
Journal of Clinical Nursing, 21, 2149–2159
End of life and palliative care
We consider findings to be transferable to similar contexts
and of value also in the care of other groups of patients in the
haemodialysis unit, and the detailed description of partici-
pants and context facilitates judgements of transferability.
Acknowledgement
This research was supported by Sophiahemmet Foundation,
Stockholm.
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