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Dying means suffocating: perceptions

of people living with severe COPD
facing the end of life
Sylvie Hall, Alain Legault, Jos Ct

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 disease 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 mortality 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 dyspnoea. The latter has repercussions on several
spheres of life (Jonsdotjtir, 1998; Olivier, 2001;
Elofsson and hlen, 2004). In particular, activities 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 different. This is why investigating the matter is of
great importance.

International Journal of Palliative Nursing 2010, Vol 16, No 9


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
experienced increased symptomatology. For
95% of participants, this translated into the continuous presence of painful and debilitating dyspnoea (Skilbeck et al, 1998). Moreover,
participants mentioned the presence of fear and
anxiety, which intensified during fits of dyspnoea. The continuous presence of severe dyspnoea caused them to become increasingly
dependent on family and friends. This dependence grew with the approach of death (Lynn et
al, 2000). Studies have shown that participants
evaluated their quality of life to be poor and
extremely deteriorated. They have also demon-

Sylvie Hall is
Nurse Clinician and
case manager for COPD
Centre hospitalier de
lUniversit de Montral
(CHUM), Canada
Alain Legault is
Professor at University
of Montreal, Centre de
recherche de lInstitut
universitaire de griatrie
de Montral, Jos Ct
is Nurse Clinician
Universit de Montral,
Centre de recherche du
CHUM, Canada
Correspondence to:
Sylvie Hall



of information
by health
was deficient
for people
living with

strated that both the physical and the psychosocial needs of people living with severe COPD
were underserved (Skilbeck et al, 1998; Lynn et
al, 2000; Jones et al, 2004; Seamark et al, 2004).
In summation, the end stage was marked by the
omnipresence of severe dyspnoea, anxiety, and
symptoms of depression. In addition, though
most participants (60%) preferred comfort care,
a high percentage wished that resuscitation
manoeuvres be practised up until one month
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 communication 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 exacerbations. Given that the end of life is unpredictable for this patient group and that the subject is
seldom discussed by practitioners, we have limited knowledge of what these people dread and
desire at the end of life. Against this backdrop,
the authors undertook a study aimed at describing the perceptions of people living with severe
COPD with respect to the end of life.

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 hospital in Montreal, Canada, which systematically


monitored and provided care for people living

with COPD. Participants were recruited by
nurses according to the following selection criteria: suffering from severe COPD, that is, a
FEV1<40% of the predicted value, as defined by
the British Thoracic Society, or being oxygendependent; presenting level-4 dyspnoea (having
to stop to catch ones breath after covering 100
yards) or level-5 dyspnoea (too out of breath to
leave the house or after getting dressed); hospitalized in the past year following an exacerbation episode; capable of expressing oneself in
French and interested in sharing ones perceptions regarding the end of life. There was only
one exclusion criterion: suffering from cancer.
The research project was approved by the hospitals research ethics committee. Participants
signed a consent form before being interviewed.
The studys 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 interviews lasted on average 70 minutes and were
conducted at the participants home. Given the
nature of the phenomenon under investigation,
the interviews began with a series of more general questions before becoming more specific and
targeted as the discussion progressed and a climate 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 participants. Consequently, participants were informed
that they could put a stop to the interview without prejudice or could pass on any question.
Breaks were offered regularly to allow participants to control their dyspnoea. Participants
were advised that the interview would be audiotaped 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 reduction, data display, and conclusion drawing/ verification. The various data gathered and
generated during the course of the interviews
were analyzed with the Atlas.ti computer application. 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 audiotape both the interviews with participants and
the regular discussions among researchers.

Table 1.Themes and sub-themes to emerge from analysis



Living and seeing oneself decline

Experiencing the loss of ones capacities

Living with the fear of the next
Living without speaking openly of death

Living and preparing to die

Living with the menace of death

Leaving family and friends behind is
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

and friends

Being advised of the imminence of death

Dying in hospital
Being surrounded by family and friends

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 subthemes (Table 1).

Living and seeing oneself decline

The participants described living with severe
COPD as experiencing the loss of ones capacities, 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 activities 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 limitations stemming from this state of affairs. This
adaptation did not always seem easy for participants to do.
Ive 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 security and they felt at a loss when it occurred. For
them, hospitals were reassuring.
I wasnt 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 hospital, theyd know what to do, surely. Its reassuring. (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

dition was deteriorating, that their disease was

degenerative and that it was terminal, the word
death was seldom pronounced by the participants, 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, preferring instead to focus on living their life.
No, I dont linger on that. Im ready. Ill cross
that bridge when I get to the river. Im not there
yet. I havent 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 persons 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



about the
desire to die a
good death

is the one thatll do it. Every time I get pneumonia I wonder whether my time has come.
Do you understand that I am living on a
bomb? (Mr H)
Interviewer: Do you have any fears about
dying? Respondent: I fear dying, period.
Thats for sure. Nothing more to add. (Mr B)

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 accompanying someone toward death were varied.
Indeed, participants presented paradoxical discourses 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 hospital. 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 dont 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 support. 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. Ive 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 normal 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-


ing for air generated panic. One of their concerns was directly related to this fear of dying of
suffocation and not being comforted.
I can face the fact that, when the end comes,
Ill be gasping for air. Thats my life, Im always
out of breath. So when the time comes I know
for sure that Ill 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 suffer when death arrived, but they had no idea
how things would unfold. Would death be painful? This was a major concern for them.
I dont know how it will unfold. What more is
there to say? Interviewer: Would you like to
know what to expect? Respondent: Yeah, Id
like to know. Will it be painful? (Mrs S)
I dont know whether its 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. Thats
what it means: to leave with peace of mind. To
be able to say my peace of mind is your peace
of mind, thats what Im leaving you. Thats
what it would mean. To know that everyone is
fine. Thats all Im 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, participants 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 Im going to die. I know that
youre not fortune-tellers, or gods. Interviewer:
Youd 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, 6months,
3months, 2months, 1 month. I want to know.
I have a right to. Its my life. Im the one whos
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.
Its 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 person, entering such a facility meant never going
home again.
Theres a nursing home here [for palliative
care]. I wouldnt want to end up there. Id
much prefer that it took place in a hospital.
Not in a home where you know youre 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 surrounded 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
theyre just waiting for you to expire in a sense.
They know youre going to die. But youre
hanging on. And youre thinking: Good God,
do something, come and get me. (Mr N)

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

of the end of life of people living with COPD

focused on how the last year on life was experienced. These have reported the impact of
increasing symptomatology on the various
spheres of life. Though the study confirms a
number of points related to living with COPD, it
contributes new elements concerning perceptions
about the end of life. The discussion will deal
with the results in connection with these perceptions.
By giving people living with severe COPD a
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 contradictory attitude demonstrated that participants
seemed to prefer to keep their reflections regarding the end of life to themselves.
Various apprehensions concerning the end of
life were expressed. For one, the uncertainty surrounding the possibility of experiencing an exacerbation 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 episodes. 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.

stated they
wanted to die
in hospital,
provided a
sense of



Though there
was always the
chance of
dying, the
desire to live
was there as


Also, it was important to participants to die in

hospital. The possibility of surviving an exacerbation was raised. This brought up a paradox in
that, though there was always the chance of
dying, the desire to live was there as well. For
participants, the hospital also represented a
guarantee that they would receive care to comfort them and prevent them from suffering. Not
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
studys 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 reassuring 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 contributing to the decision.
Finally, to the authors knowledge, the last
sub-themebeing surrounded by family and
friends at time of deathhad 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 surrounded by family and friends seems related to
dying in hospital for participants.
The end of life, such as discussed by the
studys participants, can be broken down conceptually into three facets. The first is the end of
life itself, which corresponds to a persons last
moments. It is possible to yield from the results a
definition of end of life, namely, to die without
suffocating, surrounded by ones 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

to come. The third facet concerns the relationship with practitioners. In this connection, people 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

By revealing certain perceptions of people living
with severe COPD, this study raises other questions. 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 contribute 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 longitudinal 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 harmony with their perceptions.

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 ones family
and friends for ones 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
improving the wellbeing of people living with
severe COPD. Il

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