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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.
Abstract
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
sylvie.hall.chum@ssss.
gouv.qc.ca
451
Research
The
communication
of information
by health
professionals
was deficient
for people
living with
COPD
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.
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 hospital in Montreal, Canada, which systematically
452
Research
Sub-themes
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 subthemes (Table 1).
453
Research
The
participants
were
unanimous
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)
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)
454
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)
Research
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)
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
All
participants
stated they
wanted to die
in hospital,
which
provided a
sense of
reassurance
455
Research
Though there
was always the
chance of
dying, the
desire to live
was there as
well
456
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.
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 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
JPN
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