Palliative and Supportive Care, page 1 of 10, 2014.
# Cambridge University Press, 2014 1478-9515/14 $20.00

doi:10.1017/S1478951514001151“The unpredictable death”—The last year of life
for patients with advanced COPD: Relatives’ stories

KRISTINA EK, R.N., PH.D.,1 BIRGITTA ANDERSHED, R.N.T., PH.D.,2,3
EVA SAHLBERG-BLOM, R.N., PH.D.,4 AND BRITT-MARIE TERNESTEDT, R.N.T., PH.D.2,5
1

School of Health and Education, University of Skövde, Skövde, Sweden
Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden
Department of Nursing, Gjøvik University College, Gjøvik, Norway
4
School of Health and Medical Sciences, Örebro University, Örebro, Sweden
5
Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden
2
3(RECEIVED July 17, 2014; ACCEPTED August 27, 2014)

ABSTRACT
Objective: The end stage of chronic obstructive pulmonary disease (COPD) is described as
prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly
over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden
death or a recovery of longer or shorter duration. This makes it difficult to identify the criticaljunctures in order to prognosticate the progress and time of death. Patients with COPD often
express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will
worsen and lead to death by suffocation. The present article aimed to retrospectively describe
the final year of life for patients with advanced COPD with a focus on death and dying from theperspective of relatives.
Method: Interviews were conducted with the relatives of deceased family members who had
advanced COPD. In total, 13 interviews were conducted and analyzed by means of content
analysis.
Result: All relatives described the patients as having had a peaceful death that did notcorrespond with the worry expressed earlier by both the patients and themselves. During thefinal week of life, two different patterns in the progress of the illness trajectory emerged: atemporary improvement where death was unexpected and a continued deterioration where
death was inevitable.
Significance of Results: The patients and their relatives lived with uncertainty up until thetime of death. Little support for psychosocial and existential needs was available. It is essential
for the nurse to create relationships with patients and relatives that enable them to talk about
dying and death on their own terms.
KEYWORDS: Chronic obstructive pulmonary disease, End of life, Palliative care, Oxygentherapy, Dying and death

INTRODUCTION

The end-of-life phase and death are certainly very
important events in our lives (Seymour & Ingleton,
2004), and it is known that this period requires special attention when it comes to patients who suffer
with COPD. These patients do not usually have access to palliative care the way that people with, for example, cancer diagnoses have (Curtis et al., 2002),
which may result in inadequate care with respect totheir needs (Au et al., 2006; Elkington et al., 2005).
It is also known that relatives often do not receive

Advanced chronic obstructive pulmonary disease(COPD) is a progressive disease with no known
cure and is one of the five principal causes of mortality in the world (World Health Organization, 2007).

Address correspondence and reprint requests to: Kristina Ek,
University of Skövde, The School of Health and Education, Box408, SE-541 28 Skövde, Sweden. E-Mail: kristina.ek@his.se1

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the support they need during different phases of thedisease (Ek et al., 2011a; 2011b). This affects the wellbeing and daily quality of life of all family members.
The symptom burden for patients with COPD is high,involving breathlessness, coughing, phlegm, fatigue,
dejection (Lowey et al., 2013; Gullick & Stainton
2008; Elkington et al., 2005; Seamark et al., 2004;
Edmonds et al., 2001; Claessens et al., 2000), anxiety,and depression (Wagena et al., 2005; Shackell et al.,2007; van Manen et al., 2002). Due to the severe
symptoms, a patient’s health situation is describedas poor (Habraken et al., 2009; Ek & Ternestedt,
2008; Fraser et al., 2006; Barnett, 2005; Joneset al., 2004). However, some studies have shownthat many patients are able to create a life that also
contains meaningfulness despite their difficulties(Ek et al., 2011a; 2011b; Ek & Ternestedt, 2008).
The existential suffering is often described in feelings of guilt and meaninglessness (Ek & Ternestedt,
2008; Reinke et al., 2008). Depression and anxiety
are often major problems close to death (Lynn et al.,2000). However, these problems often go unnoticed
by health professionals (Strang et al., 2013; Spence
et al., 2009; Maurer et al., 2008). Fear of slowly suffocating to death is also often described (Ek et al.,2011a; 2011b; Gardiner et al., 2009; Habraken
et al., 2007).
COPD is likely to progress slowly over several
years and can be punctuated by sudden exacerbations that sometimes end in sudden death (Lunney
et al., 2003; Rabe et al., 2007; Murray et al., 2005)
or a recovery of longer or shorter duration. This
makes it difficult to identify the critical juncturesin order to prognosticate about disease progress
and time of death (Gott et al., 2009; Spence et al.,2009). The end stage of COPD is described as prolonged (Habraken et al., 2009), although there arevariations. Patients with COPD often express afear that the dying process is going to be difficult(Nguyen et al., 2013; Ek, 2010). There is, for example, a fear that the dyspnea will worsen and lead todeath by suffocation (Hall et al., 2010; Ek et al.,2011b). Few studies have been published that
describe the final time of life for patients withadvanced COPD. Therefore, it seemed important tostudy the final year of life, including the care needs,
with a particular focus on the last week of life—that
is, on dying and death.

AIM
The aim of our study was to retrospectively describe
the final year of life for patients with advanced
COPD with a focus on dying and death from the perspective of relatives.

Ek et al.

METHODS
The study had a descriptive design. The data werecollected by interviews with relatives of deceased patients who had suffered from advanced COPD. Theinterviews were supplemented with descriptions of
the course of the patients’ disease, based on a timeaxis, constructed by the relatives. The data were analyzed using qualitative content analysis (Graneheim & Lundman, 2004).
Participants
The study sample was suitable (see Patton, 2002).
The relatives were recruited from a pulmonary clinic
at a university hospital in central Sweden and identified from deceased patients’ medical records. To be
included in the study, the patients needed to have
had COPD as the primary diagnosis and long-term
oxygen therapy (LTOT) 16 –24 hour per day. The criteria for inclusion of relatives were that the relative
was named as the patient’s next of kin in the medical
records and was involved in the patient’s final phaseof life. An informational letter about the study wassent to 36 relatives (named in 36 records). Thereafter,
the first author phoned the relatives, gave additional
information about the study, and asked if they wereinterested in participating. In all, 10 relatives declined participation because they had not been involved in the patient’s last phase of life, and 13
relatives did not state any reason for not participating. In total, 13 relatives (five husbands, four wives,
two sons, and two daughters) agreed to participate.
The interviews were conducted during 2009. The
characteristics of the deceased patients are presented
in Table 1.
Ethical Considerations
Information about the voluntary nature of the informants’ participation and the right to withdraw wasprovided both before and during the interviews in
verbal and written forms. Experience from interviews in similar situations has shown that people
can reap benefits from talking over a difficult situation and that communicating about it can help
them move along in the grieving process (cf.
Werkander-Harstäde, 2012; Ek 2010; Melin-Johansson et al., 2008). Our study was approved by the regional ethics review board in Uppsala, Sweden(approval no. 2007/121).
Data Collection
Interviews and Time Axis
Retrospective interviews with relatives constitute a
common method for collecting information about the

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The unpredictable death

Table 1. Characteristics of patients with advanced COPD
Name

Age

Sex

P1
P2
P3
P4
P5
P6
P7
P8
P9
P10
P11
P12
P13

70
70
75
75
70
70
80
80
75
70
75
70
65

FemaleFemaleMale
Male
FemaleMale
FemaleFemaleMale
FemaleMale
FemaleFemaleLength of LTOT

Place of Death

Relatives

2 years
1,5 years
1 year3 months
2,5 years
2,5 years
1 year
1 year
1,5 years
3 years
2,5 years
2 years
3 years

Intensive care unit
Pulmonary clinic
Pulmonary clinic
Pulmonary clinic
Pulmonary clinic
Pulmonary clinic
In own home
Pulmonary clinic
In own home
Pulmonary clinic
In own home
Pulmonary clinic
Pulmonary clinic

Husband
Child
Wife
Wife
Child
Wife
Child
Child
Wife
Child
Wife
Husband
Husbanddying phase (Elkington et al., 2004; Sahlberg-Blom,2001), and relatives are considered credible witnesses(Anderhed & Ternestedt, 1998). The place for the interview was chosen by the relative (either theirhome or workplace), and each interview lasted between 25 and 80 minutes. An interview started with
an open-ended question: “Can you please tell me
about the last year of X’s life?” After the preliminary
questions, additional questions were asked about
how COPD had affected the patient’s daily life andif anything had been especially difficult, about their
symptoms, about their contacts with healthcare services, and about the dying process and moment ofdeath. The interviews were collected, audiotaped,
and transcribed verbatim by the first author (KE).
To obtain a clearer and deeper picture of the illness’s progression, relatives were asked to illustrate
their experiences using a time axis as a complementary tool. This was done together with the interviewer.
The time axis consisted of a line on which each month
was marked, where the relative noted when the patient had been hospitalized as well as his or her periods of better or worse health. Notes were also madewhen new symptoms or other changes occurred concerning the patient’s health and daily life. To aid theirmemory, seven of the relatives employed a diary orother notes made during the patient’s illness whenconstructing the time axis. The interviews and thetime axes were considered together for each patient.
Analysis
The interviews and time axes were analyzed separately. The analysis of the interviews was conductedfirst by means of content analysis (Graneheim &Lundman, 2004). Thereafter, each time axis wasanalyzed with a focus on the illness’s process andthe patient’s last year of life (see below).

Step 1. The interviews were read several times inorder to obtain an overall impression of
the content.
Step 2. Meaning units describing the patient’s
final year of life were identified and analyzed. The meaning units were condensed
into comprehensive units and then coded.
The codes that had something in common
were combined into three subcategories(Table 2): (1) experiences of bodily losses,(2) periods of struggling between life anddeath, and (3) the unpredictability ofdeath—which would later be comparedwith analysis of the time axes.
Step 3. The results of the analysis of the time axes
showed recurring periods of severe exacerbations characterized by uncertainty about
whether or not the patients would survive.
This was in line with two of the identified
categories from the interviews. The analysis from both the interviews and time axes
with a focus on the patient’s last week oflife showed two patterns: (1) a quick progression where the disease was characterized either by a temporary improvement
for a short time before death, or (2) a slow
disease progression with a gradual deterioration in the patient’s condition.
Step 4. To critically verify the patterns thatemerged from the analysis, the interviews were read again and comparedwith the time axes. The categories andsubcategories identified in step 2 wereconfirmed. The categories were: (1) experiences of bodily losses, (2) periods ofstruggling between life and death, and(3) the unpredictability of death. The

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Ek et al.

Table 2. Examples of content analysis from meaning units to category
Meaning Units

Condensation

Sometimes her condition
Rapidly increasing
deteriorated so quickly withbreathingincreasing breathingdifficulties
difficulties when the only
thing to do was to rush (. . .)there was no knowing
whether she would comehome again
He became confused from time Was a stranger toto time, which he experihimself when he
enced as difficult (. . .) he
was confused.
didn’t recognize himself
She had a peak a few days
Suddenly gained
before she died. At that time
more energy andshe was very fit and walked
was strong enoughto the day room, so it was
to walk
very odd
Nothing much happened but Became gradually
she just lay there andmore tired andsomehow sank into a deep
slept for longer
sleep
periods

Code

Subcategory

Category

Obviousdeterioration

Periods of struggling
between life anddeath

Experiences of bodily
lossesPeriods ofconfused
self-image

A challenged
self-image

TemporaryTemporary
Living withimprovement
improvement—death
unpredictability of
was unexpected
death the last weekof life
Became slowly
weakersecond category is based on the subcategories of “temporary improvement”(death is unexpected) and “continued deterioration” (death is expected).
Several strategies were employed to enhance the rigor of our findings. The first author (KE) carried out
the interviews and analysis. During this process,time and space were provided for reflection, dialogue,
and follow-up questions. The results and categories
were also continuously discussed between the authors and in seminars together with other researchers from outside our research group.

RESULTS
According to relatives’ stories, all the patients had
the disease for between 10 and 15 years. The illness
trajectory had a gradual and insidious deterioration—a state perceived as normal and relatively stable. This stable state was interrupted by shorter or
longer bouts of deterioration. However, treatment often led to recovery and a new period of stability.
Those periods usually created new hope in bothpatients and relatives during extended periods of improvement.
Experiences of Bodily Losses
When relatives compared the patient’s health statusduring the final year of life to their previous healthstatus, the differences consisted of increasingly

Continued
deterioration—death
was expected

stronger symptoms, more sudden deterioration,
increased dependency, and significantly reduced
quality of life, which affected their possibility for
self-determination. This was particularly the caseduring periods of deterioration where dependence
on other people increased. Relatives described it as
the patient being forced to subordinate him/herself
both in terms of their body and their possibilities
for obtaining help and care. This limited their lives.
According to relatives, the patients expressed that
their body did not feel like before, that it had become
dried up, or refused to obey them. Patients’ struggles
to cope with severe symptoms took on a new form.
Such bodily symptoms as breathlessness, phlegm,
coughing, and fungal infections of the mouth were
described as especially difficult in terms of managing
everyday life. Some patients also suffered from feverand swelling of the body. Phlegm was described as being a particularly difficult symptom with psychological, social, and existential effects. This can be
exemplified by a son’s story about his father, a man
who made sure every day to dress well. The son explained that the father perceived the mucus to be
the problem that he suffered from most because it
made him feel undignified, which limited his everyday life:

I feel like a real slime, man. Every time I used topass the old men on the bench in town who were
coughing and spitting up phlegm, I always thought
how disgusting they were. Now I’m one of them.

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The unpredictable death

A daughter described her mother’s experiences insimilar fashion:
She always had a carrier bag hanging next to her
on the chair—folded paper so that she was prepared when she lacked the strength to cough [thephlegm] up. It was tough. She felt sickened by it
and suffered on our behalf due to fear that wewould find her disgusting.
The above quotations reveal that the sick person became nauseated due to their condition and that theyfeared being disgusting to others. The phlegm did notjust affect the body—it also created existential reflection and affected the patients’ self-image and perceptions of who they were.
The relatives’ stories showed that those patients
who had no close partner and lived alone were described as extra vulnerable, especially due to theirdependency on others. These patients found it difficult to express their needs as well as to be strong
enough to make their voice heard (e.g., when thebreathing problems accelerated). Then they would
withdraw and reduce their need for help or be quiet.
A daughter described such a situation, telling how
her mother felt violated when new staff came tohelp her prepare for bed without being aware of her
needs and routines:
She was always at her best in the evening and did
not go to bed before nine. But she became very tired
at the end. She would lie on her bed with her
clothes on because she didn’t have the strength totake them off. (I usually helped the staff care forher at 9:00 o’clock in the evening; there was a silent
agreement.) Then two [new care staff] came andstarted to undress her before seven, and it madeher feel very small. She found it distressing, as
she didn’t know them.
The care staff helped this woman according to theirroutines and not on the basis of the woman’s desires.
In her vulnerable position, the woman lacked thestrength to assert her will, and she felt violated andbecame frightened and silent. The attitude of thecare staff had consequences both for the woman’s
self-image (she felt not respected as a person) andher sense of dignity. According to her daughter, thewoman (her mother) was humbled.
According to relatives, confusion was a symptomthat occurred often during the final year, but neither
the patients nor relatives received any explanation or
information about it. The level of confusion couldchange during the day and from one day to thenext. The patients were sometimes clear, but shortly
afterwards they became confused. The duration ofsuch periods could be between one and several
days. These periods of confusion constituted an additional threat to a patient’s need for control and selfdetermination. The relatives described the fact thatpatients found it difficult to express themselves in
the way they had been able to do before. One patient
described herself as a “stranger to herself,” explaining, “My brain is me, and this is not me,” and “Thebody does what it wants and not what I want.”
As described above, the attitude of the care staff toward a sick person could harm a patient’s self-image
and sense of dignity. The staff ’s attitude became an
obstacle when they lacked understanding of the ill
person’s whole situation. Relatives reported that hospital care staff did not take patients’ suffering seriously during such uncertain trajectories. The focus
was on the physical symptoms, and psychosocialand existential needs were ignored.
Struggling Between Life and DeathAs the disease progressed, obviously, the patients deteriorated. The view of the relatives at this time wasthat patients were undergoing a life-and-deathstruggle, especially when unexpected exacerbations
often meant hospital care. Anxiety, irritation, andconcern about the disease’s development were clear.
The relatives described how they often experienced
these episodes as a time when the patients were dying and how they were repeatedly called to the hospital. On each occasion, they had said goodbye andprepared themselves for the person to soon passaway. Neither the physicians nor the nurses could
predict whether or not patients would survive. The
duration of these periods was described as varying
between four days and one week. One daughter
talked about her mother’s disease as follows:
The shifts were very strong, and she was hospitalized many times. She could be fit in the morning,
and then they would phone in the evening to saythat I had better come because she hasn’t got
long to live, and it continued like that for a very
long time.
Thus, the relatives also had to endure the struggle
between life and death as regards their loved one.
The daughter quoted above had gone through this cycle several times. It was described as stressful for her
to repeatedly prepare for her mother’s death. The relatives and patients had to constantly readapt when
the disease took a new turn, and these rapid shifts
between hope and despair were perceived as stressful.
Some patients had on those occasions talked about
their impending death and how it would turn out.

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Ek et al.

Relatives talked about how some patients had expressed fear and an expectation that their deathwould be painful and prolonged, just as their disease
course had been. However, a common view was thatpatients avoided talking about dying or death, andwhen they recovered from a deterioration, they tried
to return to normal life as soon as possible.
Living with the Unpredictability of Death inthe Last Week of Life
Some 10 of the 13 patients were hospitalized for between two and six days before they died. The reason
for hospitalization was a need for symptom relief, usually because the patient suffered from infections, andthat the symptoms had become more severe. The otherthree were cared for in their homes and died there.
Temporary Improvement: Death Is Unexpected
Seven relatives reported that the patient showed atemporary improvement in his/her health status
one to two weeks before their death. During this period, the patient’s physical and mental energy increased, and such a marked improvement usually
had not been seen during the past year. Some patients and relatives hoped that the disease had takena turn for the better and that the patient’s condition
had improved. Care planning for discharge home waseven discussed in some instances. The relatives ofthese patients described the death as “an event”
that occurred suddenly and unexpectedly, eventhough they knew that the patient was seriously ill.
One wife described it as follows:
We [wife and patient] had no idea that he might
die. It just didn’t occur to us. Instead, we thought
he would become fit as usual and return home, because that is what had happened on previous occasions.
Since the patient and relatives had experienced uncertainty over a long period, varying patterns of thedisease had become common, which perhaps madeit more difficult to recognize changes in the patient’s
condition. The relative’s descriptions also showedthat the care staff were not aware that the patient
was so close to death. It was only after the deaththat all involved realized that the patient’s condition
had deteriorated so quickly.
Some relatives had noticed that patients who had
been experiencing frail health had been relatively
strong during the final week of life. They took care ofsome practical issues, which may have indicatedthat the patients had had a premonition that life
would soon end. For example, one man gave away
important letters that he had gathered for his son. A

woman who had been living in a difficult relationshipdecided to end it the week before she died. She wanted
to die her own death and took the consequences of thisdecision. Of the seven patients who were reported tohave experienced a temporary improvement in health,one patient spent the last week at home and died
there. Five patients died in the presence of relatives,
and their deaths were described as peaceful. The moment of death was described as unexpected and wascharacterized by a mild cough or sigh.
Continued Deterioration: Death Is Expected
Six relatives described the patient’s dying as a continuous and ongoing deterioration of health. Nothing unexpected or sudden occurred during the final week ofthese patients’ lives. The relatives noticed such physical signs as the patient’s body becoming colder andgradually more cyanotic, which gave them an indication that death was near. The cyanosis had occasionally occurred during previous exacerbations but was
now more obvious. The relatives described the deathas expected. According to relatives, some patients
had described a new feeling in their body or thatthey had lost their will to live shortly before their
death—a feeling that they were going to die very soon.
One wife related the following about her husband’s
dying:He had a new feeling in his body that he tried to describe to me: “It feels as if I will die soon,” he said,
and he slept all the time during the final days, andsometimes he looked up and asked if he was dead.
A husband reported the following:
It was strange because she said several times during the final week, “I will not live much longer.”
Relatives reported that they had received explicit or
implicit information from care staff members thatthe patient was dying and probably would not survive the present aggravation. One husband described
how he interpreted the staff ’s attitude:
They came in a bit more often and checked on her, so
it made you understand, even if they seemed uncertain if it was for real or definitive this time. [pause]
They seemed more certain that time, I think.
Another husband got clear information about his
wife’s condition, and he put it this way:
The doctor came in and said that I should probably
not count on her making it this time—that I should
realize that it would soon be over.

The unpredictable death

Although the dying trajectory was described as deathbeing expected for these patients, the relatives had
not noticed that something had changed that indicated the patient was dying. Patients gradually dropped
into a deep sleep. Four died in the presence of theirrelatives and two without having any relatives besidethem. From the relatives’ perspective, death was nota nasty incident, but rather quite calm. The patientswere described as looking like they were sleeping.
DISCUSSION
The aim of our study was to describe the final year oflife of patients with advanced COPD based on reportsby their relatives. Somewhat surprisingly, we foundthat all the relatives described how their relatives
had a peaceful death, as opposed to the image theyand the patient had most feared. Our results agreewith previous studies showing that patients with advanced COPD are severely affected by both physicaland psychosocial symptoms (Habraken et al., 2009;
Blinderman et al., 2009; Walke et al., 2007; Jablonski
et al., 2007; Elkington et al., 2005; 2004), often over along period. The relatives in our study stated that theillness was uncertain, comprising severe exacerbations and an uncertain outcome. This meant thatthey felt that the patients could die every time theyexperienced an exacerbation. However, their healthstatus often improved, and they continued to live.
Previous studies have shown that patients and theirrelatives experience the exacerbations as an indication that death is drawing closer (Bailey Hill, 2001),
and they that live in fear of future exacerbations(Gysels & Higginson, 2010; Kessler et al., 2006;
Heinzer et al., 2003). Characteristic of the final
year of life in our study was that the patient’s condition changed more rapidly than previously and thatthe symptoms intensified. This changing pattern created uncertainty regarding the severity of the patient’s disease at the same time as the relatives
lived with the hope that the patient would survive
once again. This pattern is consistent with the experience that has been described by patients with severe heart failure, namely, life like a roller coaster(Brännström, 2007). The ambivalence of “living anddying” periodically created great uncertainty bothfor patients and their relatives (Brännström, 2007).
In our study, the relatives described the emotionallydifficult situation of having to say goodbye to eachother over and over again and not knowing whether
it was the final goodbye. That this was a strain forboth the sick and their families was clear, but whether or not it was a source of stress is not demonstrated
in the results.
Our results indicate two different dying patterns
during the final week of life: one where the patient

7
experiences a temporary improvement in health status and another characterized by continuous and ongoing deterioration before death occurs. It is notpossible to establish whether or not these patterns
are typical of those dying with COPD, as in this study
we studied only the last year at an individual level.
However, our results indicate that both the courseof the disease and the death are unpredictable in patients with COPD. The seven patients in our study
who experienced a temporary improvement during
the final week were described as unusually fit, anddischarge to home was being planned for some.
Thus, the death of these patients were not presagedby obvious physical signs; life suddenly ended. Although the patient and his/her relatives were awareof the fact that life could end during the course of an
exacerbation, they did not understand that the patient was dying when the patient actually died.
The question remains regarding at which stage
the patient himself/herself realizes that he/she isdying. There are contradictory findings concerning
patients’ awareness about the trajectory of COPD
and death. According to Cicutto and colleagues(2004), patients thought that they were in the final
phase of the disease, whereas other studies demonstrated that the patients were not aware of the trajectory of the illness (e.g., Gardiner et al., 2009).
Gardiner and coworkers (2009) found that patientswith COPD fear suffocating to death and that the dying trajectory may be prolonged in the same way as
the illness’s trajectory is. A partly surprising resultin our study was that all of our relatives described
the patient as having had a peaceful death that did
not correspond with the worry, for example, about
suffocating to death, expressed by patients.
Our results indicated that the healthcare professionals did not pay attention to symptoms that could
not be directly related to the lungs, such as patients’existential issues and worries, which could generate
feelings of being marginalized. Several authors argue that this can be a consequence of the fact that
healthcare professionals do not take psychosocialand existential needs into account and preferentially
focus only on the physical aspects of COPD (Au et al.,2006; Skilbeck et al., 1998). An example in the present study is the daughter whose mother had recurrent periods of confusion. Despite the mother’sdifficult situation over a long period of time, thedaughter had not had the opportunity to talk about
dying from COPD (cf. Au et al., 2006; Hasson et al.,2008; Skilbeck et al., 1998). Thus, it is all the more
important to be responsive to patients’ existential
needs and desire to talk about the end of life (Gysels& Higginson, 2010).
Our results show that patients’ final year of life involved extensive problems that affected their ability

8
to participate in everyday life as they had before.
With the help of Merleau-Ponty’s (1997) thoughtson the “lived body,” we can understand this further.
A human not only has a body but also lives and creates meaning through the body (Merleau-Ponty,1997). The lived body consists of the body –soul –world unit, and it is always related to a specificsituation—for instance, the last week of life. We are
involved in situations by being and living our body.
Life perception, as well as access to the world, changes when the body changes. With COPD, a person experiences his/her own body changing over a long
period of time. It is in the encounters with oneself
and other people that the human becomes aware of
his/her changing body—when the body begins to
set limits. Living with COPD therefore becomes a
special way of relating to life, and it also affects relatives’ everyday lives. Interaction with the outside
world affects both the person’s perception of her/himself and that of the disease. The relatives in ourstudy described in particular how the phlegm andcoughing contributed to the person’s feelings ofshame about their body. They felt disgusting andfeared that others would perceive them as such. Relatives reported how the sick person’s bodily changes
also reduced the possibilities of being autonomousand that his/her self-image was negatively affectedby the disease. The body behaved in a way that thepatient had no control over. It could lead to patients
withdrawing from social interaction and isolating
themselves or becoming isolated. The bodily losses
and dependence on others also had a strong existential meaning, especially in certain situations. The
fact that the body, especially during severe episodesof the disease, also affects existential well-being is
in line with the thoughts about the lived body formulated by Merleau-Ponty (1997). We not only have abody—we are our body. The body is the hub aroundwhich everything revolves.
This retrospective study was built upon relatives’
experiences and memories of patients’ life situations
and dying during the final year of life. The interviews
were conducted one to three years after the patient’s
death. Although the period between the patient’s
death and the interview may seem extended, the informants’ descriptions were clear. Several of the relatives had kept a diary during the period of illness,and these were employed during the interviews,
which strengthened their reliability. The relatives’
way of talking about the now dead family member’s
last year of life indicated that they all remembered
the process rather well regardless of whether they
were partners, children, or siblings of the deceased.
This information was particularly rich in content
with respect to the final week of life, and it seemedthat the time axis then served as a memory support

Ek et al.

and gave structure to the narrative. Our impressionis that the relatives were credible witnesses. They
talked about the family member’s illness and deathin a credible manner. Andershed and Ternestedt(1998) found that significant events that affect us often remain as detailed memories.

CONCLUSION
The patients and their relatives lived with uncertainty up until the time of death, which to a certain extent became a habit. During the last year, thesituation deteriorated, and the patient suffered periods of unpredictable exacerbations with uncertain
outcomes. The patient’s practical and human needs
increased, resulting in a high dependence on care.
However, little support for his/her psychosocial andexistential needs was available. It seems, therefore,
essential for the nurse to create relationships withpatients and relatives that enable them to talk aboutsituations such as dying and death on their own
terms. All patients experienced a peaceful death, contrary to what they and their relatives had expected.
Death came in some cases after a period of substantial improvement. There is a need to prospectively
follow patients with COPD during the last years of
their life in order to further deepen our knowledgeof the disease.

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