Research
Dying means suffocating: perceptions
of people living with severe COPD
facing the end of life
Sylvie Hall, Alain Legault, José Côté
C
hronic obstructive pulmonary disease
(COPD) is an irreversible condition.
People living with COPD are affected
every day by debilitating dyspnoea that interferes
with their activities and necessitates continuous
adjustments on their part. Given the degenerative
nature of COPD, the potential for exacerbation is
always present and, though the course of the dis-
ease is unpredictable, it is inexorably fatal.
Exacerbation is defined by the Canadian
Thoracic Society (CTS), (2007:52b) as:
‘A sustained worsening of dyspnoea, cough or
sputum production leading to an increase in
the use of maintenance medications and/or
supplementation with additional medications.’
COPD is a health problem for which the mor-
tality rate is escalating. According to the World
Health Organizaiton (WHO), it will go from
being the sixth to the third leading cause of
death worldwide from 1999 to 2020 (Hurd,
2000). In Quebec, Canada, the mortality rate
related to this disease has apparently doubled in
the span of 20 years (Aucoin, 2005). Contrary
to other diseases, the end-of-life trajectory is not
clearly defined (CTS, 2007). Consequently, it is
difficult to predict when a person living with
COPD is approaching the end of life.
Living with COPD means living with dysp-
noea. The latter has repercussions on several
spheres of life (Jonsdotjtir, 1998; Olivier, 2001;
Elofsson and Öhlen, 2004). In particular, activi-
ties of daily living and instrumental activities of
daily living become more laborious. Certain
studies (Anderson, 1995; Gurthie et al, 2001;
Hu and Meek, 2005) have suggested that people
living with COPD experienced the effects of the
incapacitation engendered by this disease on a
daily basis and that this severely undermined
their quality of life. However, as none of these
earlier studies focused on the end-of-life stage,
the reality at this critical period might be differ-
ent. This is why investigating the matter is of
great importance.
International Journal of Palliative Nursing 2010, Vol 16, No 9
Abstract
Aim: The purpose of this research was to describe the perceptions
of people living with severe chronic obstructive pulmonary disease
(COPD) with respect to the end of life. Method: For this
descriptive exploratory qualitative study, semi-structured interviews
were conducted with six participants suffering from severe COPD
hospitalized in the past year following an exacerbation episode. The
data were analyzed using the method developed by Miles and
Huberman (2003), which comprises three main steps: data
reduction, data display, and conclusion drawing/verification. Results:
The analysis yielded four themes that reflect the perceptions of
participants with respect to the end of life, namely: living and seeing
oneself decline, living and preparing to die, dying of COPD means
suffocating, and dying in hospital surrounded by family and friends.
What emerges from the study is that persons living with severe
COPD wish to die without suffocating, in hospital, surrounded by
family and friends, all the while hoping to go on living. Conclusion:
This study contributes to a more comprehensive understanding of
the end-of-life experience. It shows the importance of
accompanying these persons properly towards the end of life and at
the moment of dying. The study proposes a series of avenues for
future research and makes recommendations for practice.
Key words: People living with COPD ● End of life ● Perceptions
● Qualitative research
Some studies (Skilbeck et al, 1998; Lynn et al,
2000; Jones et al, 2004; Seamark et al, 2004)
that have examined the last year of life have
shown that people living with severe COPD Sylvie Hall is
Nurse Clinician and
experienced increased symptomatology. For case manager for COPD
95% of participants, this translated into the con- Centre hospitalier de
l’Université de Montréal
tinuous presence of painful and debilitating dys- (CHUM), Canada
pnoea (Skilbeck et al, 1998). Moreover, Alain Legault is
Professor at University
participants mentioned the presence of fear and of Montreal, Centre de
anxiety, which intensified during fits of dysp- recherche de l’Institut
universitaire de gériatrie
noea. The continuous presence of severe dysp- de Montréal, José Côté
noea caused them to become increasingly is Nurse Clinician
Université de Montréal,
dependent on family and friends. This depend- Centre de recherche du
ence grew with the approach of death (Lynn et CHUM, Canada
al, 2000). Studies have shown that participants Correspondence to:
evaluated their quality of life to be poor and Sylvie Hall
sylvie.hall.chum@ssss.
extremely deteriorated. They have also demon- gouv.qc.ca
451
Research
❛ The strated that both the physical and the psychoso-
cial needs of people living with severe COPD
communication
were underserved (Skilbeck et al, 1998; Lynn et
of information al, 2000; Jones et al, 2004; Seamark et al, 2004).
by health In summation, the end stage was marked by the
professionals omnipresence of severe dyspnoea, anxiety, and
symptoms of depression. In addition, though
was deficient
most participants (60%) preferred comfort care,
for people a high percentage wished that resuscitation
living with manoeuvres be practised up until one month
COPD ❜ from death (Lynn et al, 2000).
It has been shown that people living with
severe COPD were aware of the gravity of their
condition and often deduced from this that the
end was near (Lynn et al, 2000; Pfeifer et al,
2003; Jones et al, 2004; Seamark et al, 2004).
Studies by Edmonds et al (2001), Exley et al
(2005), and Gore et al (2005) indicated that,
unlike for people with lung cancer, the commu-
nication of information by health professionals
was deficient for people living with COPD
regarding prognosis and decisions concerning
resuscitation measures. They added that, despite
the many similarities in terms of the end-of-life
physical and psychosocial needs of these two
types of patient, the needs of people living with
COPD seemed less well served.
To date, knowledge has focused primarily on
the symptomatology of severe COPD during the
last year of life and on the limitations that derive
from this. What emerges is that the quality of life
of people living with this condition is mediocre
and that these people experience multiple exac-
erbations. Given that the end of life is unpredict-
able for this patient group and that the subject is
seldom discussed by practitioners, we have lim-
ited knowledge of what these people dread and
desire at the end of life. Against this backdrop,
the authors undertook a study aimed at describ-
ing the perceptions of people living with severe
COPD with respect to the end of life.
Methodology
In order to explore perceptions of people living
with severe COPD about the end of life, the
authors opted for a qualitative research
approach. More specifically, an exploratory
descriptive study was conducted. This approach
describes the perceptions of people interviewed
and interpret them on the basis of data collected
and analyzed systematically (Denzin and
Lincoln, 2000; Parse, 2001; Miles and
Huberman, 2003). Moreover, it would allow
developing concepts that would lead to a better
understanding of the phenomenon.
The study was conducted in a university hos-
pital in Montreal, Canada, which systematically
452
monitored and provided care for people living
with COPD. Participants were recruited by
nurses according to the following selection crite-
ria: suffering from severe COPD, that is, a
FEV1 <40% of the predicted value, as defined by
the British Thoracic Society, or being oxygen-
dependent; presenting level-4 dyspnoea (having
to stop to catch one’s breath after covering 100
yards) or level-5 dyspnoea (too out of breath to
leave the house or after getting dressed); hospi-
talized in the past year following an exacerba-
tion episode; capable of expressing oneself in
French and interested in sharing one’s percep-
tions regarding the end of life. There was only
one exclusion criterion: suffering from cancer.
The research project was approved by the hospi-
tal’s research ethics committee. Participants
signed a consent form before being interviewed.
The study’s six participants were four men and
two women with a mean age of 69 years. They
had been living with COPD for 5 to 15 years.
They had on average 6.6 exacerbations in the
year before the study and were hospitalized on
average five times. The semi-structured inter-
views lasted on average 70 minutes and were
conducted at the participant’s home. Given the
nature of the phenomenon under investigation,
the interviews began with a series of more gen-
eral questions before becoming more specific and
targeted as the discussion progressed and a cli-
mate of trust developed. The interview guide
consisted of the following questions:
●●Do you talk about what it means to live with
COPD on a daily basis?
●●Tell me what your most recent pulmonary
exacerbation was like?
●●Do you think about dying when you have a
pulmonary exacerbation?
●●Tell me how you perceive the end of life?
Given the research topic, feeling ill at ease was
an obvious possibility on the part of partici-
pants. Consequently, participants were informed
that they could put a stop to the interview with-
out prejudice or could pass on any question.
Breaks were offered regularly to allow partici-
pants to control their dyspnoea. Participants
were advised that the interview would be audio-
taped and then transcribed so as to reproduce
what they had to say faithfully.
The data were analyzed using the method
developed by Miles and Huberman (2003),
which comprised three main steps: data reduc-
tion, data display, and conclusion drawing/ veri-
fication. The various data gathered and
generated during the course of the interviews
were analyzed with the Atlas.ti computer appli-
cation. This allowed codes to be generated, from
International Journal of Palliative Nursing 2010, Vol 16, No 9

which themes and sub-themes then emerged.
Lending the process credibility were the use of a
field journal, compliance with the analysis
method and the diverse choice of participants
(Lapierre, 1997). For its part, the reliability of
the process was ensured by committing to audio-
tape both the interviews with participants and
the regular discussions among researchers.
Findings
The analysis yielded four themes:
●●Living and seeing oneself decline
●●Living and preparing to die
●●Dying from COPD means suffocating
●●Dying in hospital surrounded by family and
friends. Each theme broke down into sub-
themes (Table 1).
Living and seeing oneself decline
The participants described living with severe
COPD as experiencing the loss of one’s capaci-
ties, with an emphasis on dyspnoea and its
effects on their life. Dyspnoea was a part of their
daily life: it was present in different facets of
activities of daily living and instrumental activi-
ties of daily living, rendering certain activities
more difficult if not impossible to do.
Consequently, they had to plan out their tasks
beforehand or take breaks when performing
them. Each day, they had to cope with the limita-
tions stemming from this state of affairs. This
adaptation did not always seem easy for partici-
pants to do.
‘I’ve gotten to the point where I can hardly
function in my home anymore. Taking a
shower is a burden. Cleaning the house is a
burden. Washing dishes is a burden.’ (Mrs S)
Participants also expressed another dimension
of their life, consisting of living with the fear of
the next exacerbation. They lived with the fear
of having an exacerbation episode without ever
knowing when. According to the participants,
this experience undermined their sense of secu-
rity and they felt at a loss when it occurred. For
them, hospitals were reassuring.
‘I wasn’t even able to eat. I was even more out
of breath when I ate. It was worse. … Going to
bed was becoming an ordeal. I went to the hos-
pital, they’d know what to do, surely. It’s reas-
suring.’ (Mr)
Most of the participants interviewed did not
consider themselves to be at the end of life. Even
though they were aware that their medical con-
International Journal of Palliative Nursing 2010, Vol 16, No 9
Research
Table 1.Themes and sub-themes to emerge from analysis
Themes Sub-themes
Living and seeing oneself decline Experiencing the loss of one’s capacities
Living with the fear of the next
exacerbation
Living without speaking openly of death
Living and preparing to die Living with the menace of death
Leaving family and friends behind is
difficult
Having seen others die of COPD is
disturbing of being kept on life support
Dying of COPD means suffocating Gasping for air generates panic
Suffering means being short of breath
Dying a good death
Dying in hospital surrounded by family Being advised of the imminence of death
and friends Dying in hospital
Being surrounded by family and friends
dition was deteriorating, that their disease was
degenerative and that it was terminal, the word
‘death’ was seldom pronounced by the partici-
pants, but it was implied or alluded to. They
lived without speaking openly of death, all the
while being conscious that the disease could lead
to death. Though they spoke of death only in
veiled terms, they nevertheless thought of it.
Their discourse was paradoxical in that they
thought about death without dwelling on it, pre-
ferring instead to focus on living their life.
‘No, I don’t linger on that. I’m ready. I’ll cross
that bridge when I get to the river. I’m not there
yet. I haven’t come to the river yet.’ (Mr D)
Living and preparing to die
Whereas in the previous theme the participants
lived without talking about death, this second
theme showed that, in spite of this, participants
lived with the constant menace of death. These
people with severe COPD thought about death
owing to the fact that a pulmonary exacerbation
could result in death. The participants did not
know which one would ultimately be fatal, and
this led them to wonder about death. However,
their discourse was marked by a paradox in that
they thought about death at certain times and
not at others. Being ready to die seemed to be
related to the person’s level of autonomy, to his
desire not to be a burden on society, and to his
worsening state of health. All the same, the fear
of death was present.
‘Having emphysema is like walking on a bomb.
Each time I have a cold, I wonder whether this
453
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❛ The is the one that’ll do it. Every time I get pneu-
monia I wonder whether my time has come.
participants
Do you understand that I am living on a
were bomb?’ (Mr H)
unanimous
about the Interviewer: ‘Do you have any fears about
dying?’ Respondent: ‘I fear dying, period.
desire to die a
That’s for sure. Nothing more to add.’ (Mr B)
good death ❜
Leaving family and friends behind is difficult.
Participants indicated that they were concerned
about leaving their family and friends behind, of
no longer being a part of their life. In addition, it
seemed difficult for participants to discuss death
with their family.
‘The only fear I have is leaving Louise behind.
Leaving all of my loved ones behind. They need
me. It seems to me that they need me. Leaving
them without … without being there.’ (Mr P)
Previous experiences with assisting or accom-
panying someone toward death were varied.
Indeed, participants presented paradoxical dis-
courses in which these experiences proved to be
at times reassuring, and at others distressing.
Though it seemed that having seen someone die
was reassuring if death came painlessly, having
seen someone die of COPD was disturbing.
‘I saw men with emphysema die at the hospi-
tal.  … That poor man was having a terrible
time of it. He was breathing as though he were
blowing out candles. He was blowing and
blowing. I don’t know whether he was in pain
or not, but he was having such a terrible time
of it that it got to me.’ (Mr N)
The participants also touched on their wishes
regarding resuscitation manoeuvres. All
expressed the desire not to be kept on life sup-
port. However, the topic was broached with
practitioners by only half of the participants.
‘When it gets so bad that they have to hook me
up to a machine round the clock … and cut
a hole in my throat in order to breathe just to
extend my life two or three weeks … no, no,
no. I’ve told them as much at the hospital. …
Yes, yes, they know.’ (Mr N)
Dying of COPD means suffocating
Previous dyspnoea experiences coloured
patients’ way of envisaging death. It seemed nor-
mal to them that, when the moment came to go,
dyspnoea would be a part of it, as it was part of
their everyday life. This was why, for them, gasp-
454
ing for air generated panic. One of their con-
cerns was directly related to this fear of dying of
suffocation and not being comforted.
‘I can face the fact that, when the end comes,
I’ll be gasping for air. That’s my life, I’m always
out of breath. So when the time comes I know
for sure that I’ll be gasping for air.’ (Mrs D)
A definition of suffering emerged from the
analysis. Suffering was not related primarily to
physical pain but rather to a lack of breath, to
dyspnoea. For participants, suffering meant
being short of breath. They did not wish to suf-
fer when death arrived, but they had no idea
how things would unfold. Would death be pain-
ful? This was a major concern for them.
‘I don’t know how it will unfold. What more is
there to say?’ Interviewer: ‘Would you like to
know what to expect?’ Respondent: ‘Yeah, I’d
like to know. Will it be painful?’ (Mrs S)
‘I don’t know whether it’s painful. I imagine
there will be some pain.’ Interviewer: ‘What
would be painful?’ Respondent: ‘Dying on
account of your lungs. Dying from suffocating.
I imagine it has to hurt.’ (Mr N)
The participants were unanimous about the
desire to die a good death. The main elements in
their notion of a good death all had to do with
the absence of suffering. Accordingly, for some,
it was a question of passing away in their sleep
and for others, of leaving this world with peace
of mind, knowing that their family and friends
would be alright.
‘To leave this world with peace of mind. That’s
what it means: to leave with peace of mind. To
be able to say my peace of mind is your peace
of mind, that’s what I’m leaving you. That’s
what it would mean. To know that everyone is
fine. That’s all I’m asking, and then I could
breathe more easily. As though a pleasant
breeze suddenly began to blow, a nice cool
breeze.’ (Mr H)
Dying in hospital surrounded by
family and friends
The participants described how they would have
liked their end of life to unravel. It emerged that
the participants wanted to be advised of the
imminence of death. For some, knowing when
they would die would allow them to make the
most of their time remaining. At times, partici-
pants were so weakened by an exacerbation epi-
International Journal of Palliative Nursing 2010, Vol 16, No 9

sode that they could not help but feel that the
end was imminent.
‘Me, I want to know. I have a right to know
whether or not I’m going to die. I know that
you’re not fortune-tellers, or gods.’ Interviewer:
‘You’d want to be told that now the end is
near?’ Respondent: ‘Yes. If I have one year to
go, I want to be told so I can make the most of
the time I have left to live. One year, 6 months,
3 months, 2 months, 1  month. I want to know.
I have a right to. It’s my life. I’m the one who’s
going to die.’ (Mr N)
Moreover, all participants stated that they
wanted to die in hospital. The main reasons
given for this were not wanting to be alone at
home and not wanting to be a burden on family
and friends. Dying in hospital provided a sense
of reassurance.
‘It’s easier to be treated in hospital with their
equipment than it is at home. It also spares the
family a lot of anxiety.’ (Mrs D)
Dying in a palliative care nursing home was
touched on by only one participant. For this per-
son, entering such a facility meant never going
home again.
‘There’s a nursing home here [for palliative
care]. I wouldn’t want to end up there. I’d
much prefer that it took place in a hospital.
Not in a home where you know you’re going in
never to leave again. At least in the hospital
you know that you can go home and you can
sometimes step out.’ (Mr P)
Participants also mentioned not wanting to be
alone when it came time to die. To be sur-
rounded by family and friends was desired by
all. However, how the moment of their death
would be experienced by their family and friends
was a concern.
‘When you have everyone around you, and
they’re just waiting for you to expire in a sense.
They know you’re going to die. But you’re
hanging on. And you’re thinking: “Good God,
do something, come and get me”.’ (Mr N)
Discussion
The purpose of this study was to describe the
perceptions of people living with severe COPD
regarding the end of life. The results shed light
on the apprehensions and desires of people living
with severe COPD. Most of the previous studies
International Journal of Palliative Nursing 2010, Vol 16, No 9
Research
of the end of life of people living with COPD ❛ All
focused on how the last year on life was experi-
participants
enced. These have reported the impact of
increasing symptomatology on the various stated they
spheres of life. Though the study confirms a wanted to die
number of points related to living with COPD, it in hospital,
contributes new elements concerning perceptions
which
about the end of life. The discussion will deal
with the results in connection with these percep- provided a
tions. sense of
By giving people living with severe COPD a reassurance ❜
chance to express themselves, this study made it
possible to gain some insight into what it means
to face death by the disease. One notion that
emerged rather clearly was the fact of living
while seeing oneself decline and preparing to die.
This led participants to live without ever talking
openly about death. This apparently contradic-
tory attitude demonstrated that participants
seemed to prefer to keep their reflections regard-
ing the end of life to themselves.
Various apprehensions concerning the end of
life were expressed. For one, the uncertainty sur-
rounding the possibility of experiencing an exac-
erbation at any moment and the consequences
that might ensue are cause for concern. Though
several earlier studies (Edmonds et al, 2001;
Donaldson et al, 2002; Andenaes et al, 2004)
had examined exacerbation, none explicitly
revealed this fear of future exacerbation epi-
sodes. In this study, participants had previously
had an exacerbation episode and this difficult
experience now carried the threat of death,
which led them to fear a repeat of the experience
in future. It also led them to think about death
more and to fear its occurrence. Though they
thought about death and claimed to be saddened
to leave their family and friends, participants did
not share their thoughts about the end of life
with them. Not knowing how death would
unfold worried them as well. The fear of dying
from suffocation and of suffering was common
among participants. It gave rise to another fear,
namely that of being placed on life support
though there was no chance of getting better.
The study found that people living with severe
COPD wished to be informed that the moment
of death was approaching. This is in keeping
with the studies by Rocker et al (2008) and
Seamark et al (2004), which underscored that
people living with COPD were in favour of open
and frank exchanges regarding their state of
health. Wanting to know the prognosis, how the
end of life would come about, and when, were
questions that the participants asked themselves.
According to the patients, being better informed
would allow them to plan better for the future.
455
Research
❛ Though there Also, it was important to participants to die in
was always the hospital. The possibility of surviving an exacer-
bation was raised. This brought up a paradox in
chance of that, though there was always the chance of
dying, the dying, the desire to live was there as well. For
desire to live participants, the hospital also represented a
was there as guarantee that they would receive care to com-
fort them and prevent them from suffering. Not
well ❜ suffering meant not suffocating to death.
Previous studies mentioned that most people
who died from the consequences of COPD did
so in hospital. In this regard, the results of the
retrospective study by Edmonds et al (2001)
indicated that people were more likely to pass
away in hospital if they suffered from COPD
(72%) than if they had cancer (51%). All of the
study’s participants stated the desire to die in
hospital. To the authors’ knowledge, this is the
first time that the viewpoint of people living with
severe COPD has been reported on the subject.
The reasons given by participants for wanting
to die in hospital were analogous to those
reported by Steinhauser et al (2000) regarding
symptom management and physical wellbeing.
This study goes further, however, as participants
added that the need to be accompanied, the reas-
suring dimension of the hospital, the possibility
of surviving an exacerbation episode and the
desire to make the end of their life easier on
their family and friends were other elements con-
tributing to the decision.
Finally, to the authors’ knowledge, the last
sub-theme—being surrounded by family and
friends at time of death—had never been
reported in earlier studies. This can be explained
by the fact that most of the studies reviewed
sought to gain a better understanding of how the
last year of life was experienced. To be sur-
rounded by family and friends seems related to
dying in hospital for participants.
The end of life, such as discussed by the
study’s participants, can be broken down con-
ceptually into three facets. The first is the end of
life itself, which corresponds to a person’s last
moments. It is possible to yield from the results a
definition of end of life, namely, to die without
suffocating, surrounded by one’s family and
friends in hospital, all the while hoping to go on
living. The second facet has to do with family
and friends. In this regard, people living with
severe COPD see their state of health deteriorate
and limitations settle in. Though the moment of
death cannot be predicted, these people are
aware that they are headed in that direction.
Consequently, the end of life means for them
talking about death with their family caregivers
in order to be able to prepare them for what is
456
to come. The third facet concerns the relation-
ship with practitioners. In this connection, peo-
ple living with COPD wish to discuss
reanimation manoeuvres, to express how they
would like death to occur, to be informed of
how the end of life will unfold, and to be able to
voice their fears about death.
Implications for practice and
research
By revealing certain perceptions of people living
with severe COPD, this study raises other ques-
tions. It would be interesting, with respect to the
end-of-life, to explore the perceptions of family
caregivers and practitioners who surround these
people in order to obtain an overall picture. A
study including family caregivers could contrib-
ute to a better understanding, for instance, of
spousal dynamics regarding the end of life, of
how exacerbation episodes are experienced by
spouses, and of the impact of grieving on
spouses and family caregivers. Moreover, a lon-
gitudinal study could describe changes in the
perceptions of people living with severe COPD
over time. This knowledge could help develop
interventions in order to better accompany these
people headed toward the end of life.
Furthermore, it is important to disseminate these
results to the different professionals who work
with this patient group and to sensitize them to
the paradox that emerged in the current study.
This would serve to gain a better understanding
of the experience of people living with severe
COPD and thus better accompany them in har-
mony with their perceptions.
Conclusion
This study identified the perceptions that people
living with severe COPD have of the end of life.
These include dying in hospital surrounded by
family and friends without being dyspnoeic and
living while preparing oneself and one’s family
and friends for one’s death. The results of this
study may contribute to a better understanding
of the perceptions that people living with severe
COPD have with respect to the end of life.
Several relevant avenues of future research have
been identified that may assist in advancing our
knowledge in this field for the purpose of
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