Research
Exploring the advance care planning
needs of moderately to severely ill
people with COPD
Marilyse Nguyen, Jane Chamber-Evans, Alexandre Joubert, Isabelle Drouin, Isabelle Ouellet
T
he unpredictable nature of chronic
obstructive pulmonary disease (COPD)
makes it difficult for physicians to
confidently gauge which patients are likely to die
in the next 6 months (Curtis et al, 2005). This
differs from the situation for people with lung
cancer, who tend to have a more stable illness
trajectory with a more predictable prognosis. In
patients with a fairly predictable prognosis, there
is often a more fixed and appropriate time to
address end-of-life (EoL) topics. However, most
experts agree that an earlier discussion leads to
better patient outcomes regardless of the illness
(Warren et al, 2002; Stapleton and Curtis, 2007).
In the literature, ‘EoL discussion’ is used
interchangeably with the terms ‘EoL planning’
(Auer, 2008), ‘EoL decision making’ (Rocker
et al, 2007) and ‘advance care planning’ (ACP)
(Norlander and McSteen, 2000; Simon et al,
2008; Davison, 2009), with the latter being the
most widely recognised term. It is defined as ‘a
process of ongoing discussion, reflection, under-
standing and communication between a patient,
their family and health care staff for the purpose
of clarifying values, treatment preferences and
goals for end of life care’ (Davison, 2009, p170).
ACP began as a planning process for terminally
ill oncological patients. However, its use has now
expanded to non-oncological patients suffering
from any life-threatening disease following stud-
ies that demonstrated equal declines in quality of
life among cancer and non-cancer patients
(Franks et al, 2000; Luddington et al, 2001).
To the authors’ knowledge, only the needs of
people with severe COPD have been recorded in
the literature to date (Bailey, 2001; Bailey et al,
2004; Wilson et al, 2005), despite recommenda-
tions for initiating ACP in healthier patients
(Heffner et al, 1997). In the province of Québec,
© 2013 MA Healthcare Ltd
efforts have been made to integrate the ACP
process into clinical practice for people with
COPD. In 2004, a mandate was given by the
provincial Ministry of Health to design and
implement an EoL protocol for people with
International Journal of Palliative Nursing 2013, Vol 19, No 8
Abstract
Background: There is no clear consensus on how to approach
advance care planning (ACP) with people with chronic obstructive
pulmonary disease (COPD). Aim: This study aimed to explore the
perceived ACP needs of people with COPD and to investigate the
usefulness of a DVD in meeting these needs. Methods: A qualitative
descriptive design was used. Twelve people with moderate to severe
COPD were interviewed in an outpatient clinic. Results: From the
themes elicited, a mental model was created to demonstrate how the
participants engaged in a process of mental work to accept their own
mortality and subsequently engage in ACP. Conclusions: Health
professionals should not rely solely on illness severity to initiate ACP.
Rather, patients from different illness categories should be approached,
but with sensitivity to their emotional cues. Participants who were
receptive to end-of-life issues enjoyed the DVD. The DVD is a good
medium to facilitate discussion, but would be more effective if patients
were screened for readiness prior to viewing.
Key words: Chronic obstructive pulmonary disease l COPD
l Advance care planning l Terminal care l Decision aids
COPD (Réseau québécois de l’asthme et de la
MPOC, 2010). As part of this project, a DVD
movie was developed to help build patients’
knowledge around EoL options and facilitate
patient–physician discussion (Cardinal and
Cournoyer, 2010). Different health facilities
across the province bought copies of the DVD,
but it has still not been fully implemented in Marilyse Nguyen is
several outpatient sites because local clinicians Field Nurse, Médecins
have expressed scepticism about its ability to Sans Frontières,
1470 Peel, Suite 220,
meet the needs of patients. Montréal, Québec,
H3A 1T1, Canada;
Jane Chamber-Evans is
Aim Bio-ethicist, Montreal
General Hospital;
This study aimed to explore the perceived ACP Alexandre Joubert,
needs of people with COPD at different illness Isabelle Drouin, and
Isabelle Ouellet are
severities and how these are met by a DVD
Nurse Case Managers,
discussing ACP. COPD Clinic, Montreal
Chest Institute
Methods Correspondence to:
Marilyse Nguyen
A qualitative descriptive design was used for marilyse.nguyen@
the study. Qualitative descriptive studies are mail.mcgill.ca
389
Research

Table 1. Sample demographics (n=12) original classification (Blackler et al, 2004).

Therefore, for the purpose of this study the MRC
Medical Research Council category: MRC 3 n=4
scale was used as a measure of illness severity,
MRC 4 n=4
with severe COPD characterised as a score of
MRC 5 n=4 4–5 (O’Donnell et al, 2007).
Gender: male n=6 Owing to the vulnerability of the patient
Female n=6 group, participants were recruited using case
Mean age 65 years managers from the clinic, who stratified their
patients by MRC categories 3, 4, and 5 to obtain
Median age 68 years
balanced groups. The case managers acted as
Marital status: single n=4
intermediaries to ensure that each participant
Divorced n=5 was contacted by a familiar person, but someone
Married n=3 who was not their primary caregiver. Potential
Education: elementary n=1 participants were informed about the aims of the
High school n=7 study, assured of anonymity, screened for depres-
sion, and offered psychological support if needed.
General and vocational college n=2
Twelve patients were interviewed—four from
University n=2
each of the MRC categories 3 (moderate), 4
Years living with COPD: 3–4 n=2 (moderate–severe), and 5 (severe) (Table 1).
5 or more n=10 Participants were invited to bring a family mem-
Histoy of depression: yes n=8 ber along to view the DVD, but interviews were
No n=4 done individually and only participant responses
were recorded.
COPD, chronic obstructive pulmonary disease

better suited for developing a targeted approach
toward people with COPD because they allow
for a more accurate accounting of an event, such
as ACP (Sandelowski, 2000).
Ethical considerations
The planned study was reviewed and approved
by the Psychiatry/Psychology Research Ethics
Board (REB) of the McGill University Health
Centre (code 11-011-PSY).
Setting
The study took place at the Montreal Chest
Institute. This urban hospital is specialised in
adult respiratory medicine and receives patient
referrals from medical institutions within the
McGill University Health Center.
Participants
The inclusion criteria were: a patient at the clinic
with a diagnosis of COPD; at least 40 years old;
categorised on the Medical Research Council
(MRC) dyspnoea scale as 3, 4, or 5; able to speak
for 60 minutes with only mild to moderate respi-
ratory distress; and able to speak either English
or French. Illness severity is usually classified in
The DVD
The DVD was developed by a multidisciplinary
team from a public health centre. It is introduced
by a role play of a patient–doctor visit in a clinic.
It is then narrated by health professionals who
explain different life-support measures and their
implications. The DVD is divided into chapters
according to different EoL topics and concludes
with another patient–doctor role play.
Data collection
The interviewing process was split into two parts.
For the first part, participants came to the clinic
on the day of their medical appointment and met
with the researcher to complete the informed
consent process. Each participant was inter-
viewed using a semi-structured interview guide
aimed at gaining an understanding of their beliefs
and experiences related to ACP. Once the inter-
view was completed the participants watched the
DVD in order to complete the second part of
the interview process. The researcher remained in
the room during the viewing to answer any
questions related to DVD comprehension. Once
the viewing was completed, each participant was
interviewed again to obtain their impressions
about the usefulness of the DVD in the ACP
process (Figure 1).
© 2013 MA Healthcare Ltd

people with COPD using a combination of clinical

symptoms with a measure of forced expiratory Data analysis
volume and forced vital capacity. However, the Audiotapes of the interviews were transcribed,
MRC scale has been validated as being far more meaningful non-verbal data was collected from
sensitive in predicting life expectancy than the the field notes and appended to each transcript,

390 International Journal of Palliative Nursing 2013, Vol 19, No 8


and finally inductive content analysis was
conducted. Peer-review validation of concepts
and themes continued throughout the analysis
process. Part I and part II interviews were coded
and analysed separately.
Results
Part I interviews
The purpose of the part I interviews was to
group patients by illness severity and to examine
their interview narratives for differences in ACP
needs. Some trends emerged from the data analy-
sis. First, participants with an MRC scale of 5
were more likely to have made and shared EoL
decisions with their health-care team. Second,
participants with an MRC scale of 3 or 4 varied
from being unable to discuss ACP to strongly
desiring a discussion.
After establishing patterns according to illness
severity, the interviews were examined as a whole
to determine whether another phenomenon
might be responsible for the variability in ACP
needs. In fact, several participants voiced the
importance of working through psychological
issues that led to their ability to discuss EoL.
This mental work is captured in three
themes (Box 1). The outcome of the mental
work is captured by the thematic result ‘I have
completed ACP’.
I need to accept my own mortality first
Many participants described coming to terms
with their own mortality as the biggest challenge
to be undertaken in order to begin EoL discussion.
Witnessing others dealing with EOL issues
One method that seemed to bring many
participants toward reflection on and gradual
acceptance of their own death was watching
others face EoL issues or situations.
‘When I was hospitalised here, there was a man
next to me … He may have passed away by
now, but let’s just say that wasn’t the way that I
would like to end my life. I plan on taking every
precaution necessary to never end up that way.’
(Patient (P) 10, female)
Noticing an ongoing deterioration of the condition
Many participants related how coming to terms
with their loss of independence or functional
capacity was a factor in their ability to accept
© 2013 MA Healthcare Ltd
death. These participants listed a variety of losses
that they were still grieving, such as a loss of
energy, an inability to carry out leisurely activi-
ties, needing help to accomplish household
chores, and being unable to shower as often as
International Journal of Palliative Nursing 2013, Vol 19, No 8
Research
Start
Day 1: Telephone recruitment of patient by intermediary
Day 2: Phone call by student researcher explaining study
Day 3: Patients 1 and 2 sign the consent form
(1 hour) Patient 1 does part 1 interview Patient 2 waits
(1 hour) Patient 2 waits Patient 2 does part 1interview
(1 hour) Patient 1 and 2 watch DVD
(15 minutes) Patient 1 does part II interview Patient 2 waits
(15 minutes) Patient 1 waits Patient 2 does part II interview
End
Figure 1. Model of the interviewing process
Box 1. Themes from part I interviews
Theme 1: I need to accept my own mortality first
● Witnessing others dealing with end-of-life issues
● Noticing an ongoing deterioration of the condition
● Debating the meaning of life and death
● Coping with difficult emotions
Theme 2: I have to think about my wishes
● Creating criteria for a good death
● Establishing views on practicalities
● Integrating personal values into wishes
Theme 3: I am ready to discuss my wishes
● Establishing a relationship with the medical team
● Timing the discussion appropriately
● Discussing priority topics
they would like. Accepting these losses was
viewed as accepting a deteriorating condition and
possible death.
Debating the meaning of life and death
Prior to accepting their own mortality,
participants described going through an
unsettling period of reflection about life and
death. This is a trying period for most, in which
beliefs about religion are challenged, the meaning
of death is analysed, and people describe
themselves as being torn between a desire to live
and an ultimate understanding that death is
inescapable. Many participants spoke about
trying to understand what they had done to
deserve death.
‘If I am in this situation, it’s because I got
myself into it. I am the one who smoked all my
life. I am the one who did things I shouldn’t
have done. It’s normal that I ended up this way.’
(P10, female)
391
Research
❛Ideally, Coping with difficult emotions
everyone with Such existential questioning is usually accompanied
COPD would by strong emotional reactions. Fear, denial, and
depression were mentioned recurrently in respect
be assessed for to death.
their readiness
to engage in ‘You can’t live like that, with the idea that
advance care you’re going to die. Otherwise, you wake up
every morning thinking you’re going to die.’
planning (P6, male)
throughout
their illness In this respect, denying death rather than
progression.❜ confronting it made life more manageable on a
daily basis.
I have to think about my wishes
Participants identified a stage at which they
needed to process their personal values on death
in order to establish a set of EoL wishes.
Creating criteria for a good death
The concept of the good death is a set of qualities
that people value for the EoL. These values help
orient final wishes. The participants had a strong
preference for a death that was quick and as
pain-free as possible.
‘Dying quickly! Not dragging it out. In that
sense. By the blow of a hammer. Boom, it’s
over! The best would be a heart attack in the
middle of the night. Not waking up in the
morning. That would be ideal.’ (P6, male)
Many participants also expressed the importance
of their quality of life and mental capacity,
stating that they would prefer to die than to
sacrifice these two things.
Establishing views on practicalities
The participants not only established their
wishes for their own death, but mentioned
having preferences for how certain things should
be handled after their death, such as organ
donation, funeral arrangements, and the division
of assets.
Integrating personal values into wishes
Many of the participants mentioned how they
considered the needs of their families in their
decision-making process. The majority wanted
to avoid becoming a burden at the EoL. People
were said to be burdens when they required a lot
of care, had not organised their finances, had not
divided their assets, or had not established clear
directives. Preparing for the EoL was suggested
as a strategy to ease the task of grieving for
the family.
392
I am ready to discuss my wishes
In preparation for discussing EoL wishes,
participants expressed three needs they wanted
fulfilled, which form the subheadings below.
Establishing a relationship with the medical team
Many participants mentioned the relationship of
trust, security, and open communication with
their medical team as a facilitator for engaging in
ACP. They valued honesty, humour, and a less
serious medical approach to death.
Timing the discussion appropriately
The participants varied widely in their opinions
of the best time to broach ACP. Whereas some
wanted to discuss their EoL as soon as possible,
others wanted to delay it until the very end.
Overall, it seems that most of the participants
simply requested the medical team be sensitive to
their needs on an individual basis.
Discussing priority topics
Participants mentioned several EoL topics they
wanted to discuss with their medical team once
their wishes were established. Most topics
revolved around how much time they would
have left, what medications were available for
pain, the different treatment options, the stages
of disease progression, and the quality of care at
the EoL. Participants stressed the importance of
clinicians eliciting each patient’s priority topics
first and addressing these early on in the
discussion in order to keep the patient engaged.
Result: I have completed ACP
According to the themes, it seems that moderately
to severely ill people with COPD move from one
step of mental work to another until they are
ready to discuss their wishes and complete ACP.
Four participants reported that after completion
of these mental processes they were able to
participate in activities such as discussing their
code status, completing a living will, and settling
their finances. These participants had completed
the ACP process, which is the result of these
themes. In Figure 2, each of these themes is
depicted as a stage in a mental model.
Part II interviews
Most participants felt the DVD did a good job of
fulfilling information needs for the EoL.
© 2013 MA Healthcare Ltd
‘It summarises my options very well and
answers my technical questions.’ (P6, male)
However, participants who had been hospitalised
in the past were reminded of their previous bad
International Journal of Palliative Nursing 2013, Vol 19, No 8

Stage 1 Stage 2
I need to I have to
accept my own think about
mortality first my wishes
Figure 2. Model of the three stages of mental work required to foster advance care
planning (ACP) in people with chronic obstructive pulmonary disease
experiences with death while watching the DVD.
Some participants used the words ‘scary’ and
‘shocking’ to describe the visual portrayal of the
intubation and tracheostomy processes.
Nevertheless, most agreed that it was necessary
to gain a thorough understanding of the reality
of these treatments.
Participants who felt the DVD was most
relevant were often those who had already gone
through stage 1 of the mental model. Similarly,
those who struggled with their diagnosis and
prognosis tended to report disliking the DVD
and not wanting to watch it at all. Generally, the
further the participant had progressed in their
stages of readiness, the more they expressed that
the DVD met their needs. For participants who
were in stage 2 or 3 of the mental model, viewing
the DVD seemed to challenge or confirm their
pre-existing beliefs.
Discussion
Recent research has examined the impact of
health behaviour models as frameworks for
engaging patients in ACP (Westley and Briggs,
2004; Fried et al, 2009). Health behaviour
models have a strong reputation for providing a
theoretical groundwork for successful health
intervention programmes (Fried et al, 2009). One
of these models is the Transtheoretical Theory
Model (TTM), also known as Stages of Change
(Prochaska and Velicer, 1997). In a 2004 review
paper, Westley and Briggs (2004) related five of
the six stages of TTM to ACP. The five stages
outlined in their article are reminiscent of
the three stages of mental work outlined in the
present study (Figure 3).
First, the authors described the TTM’s
precontemplation phase as ‘Huh? I don’t know
© 2013 MA Healthcare Ltd
what you’re talking about’. Patients either are
ill-informed of their health issues or are
purposefully avoiding discussion. The precontem-
plation stage is similar to stage 1 of the mental
model presented here, ‘I need to accept my own
International Journal of Palliative Nursing 2013, Vol 19, No 8
Research
Stage 3 Result
I am ready I have
to discuss ACP completed
my wishes ACP
mortality first’, in that patients often have to
deal with denial before gaining acceptance
of death.
The authors then described the TTM’s
contemplation phase as ‘I’m interested in know-
ing more’. Often, patients are ambivalent and
need to be better informed of the advantages and
disadvantages of making EoL decisions before
deciding to undertake the next step (Westley and
Briggs, 2004). Similarly, in the present study,
participants who accepted death in stage 2 were
more likely to absorb and seek information. For
example, one person expressed a desire to know
more about organ donation and another asked
why people are intubated.
Next is the TTM’s preparation stage, or
‘What do I need to do?’, in which patients are
getting ready to engage in ACP (Westley and
Briggs, 2004). This is seen in stage 3 of the
mental model presented here, where patients
start to bond with the team and establish priority
EOL topics.
The TTM’s action stage is the ‘Here’s what I’ve
done’ stage, where patients are actively engaging
in the ACP process and are elaborating a plan
with the treating team (Westley and Briggs,
2004). Finally, the TTM’s maintenance stage, as
described by Westley and Briggs (2004), is when
patients require reassurance about their EoL
plan and participate in re-examinations of their
treatment decisions. This is reinforced in the
concept map of the three stages of mental work
(Figure 3) by the cyclical arrows denoting a
patient’s ability to change their mind and alter
their EoL wishes.
Therefore, the framework provided by the
TTM is useful in determining patient readiness to
engage in ACP. The congruency of the mental
model to this framework suggests that close
attention to the cues and stages will assist the
clinician in determining when and how best to
facilitate an ACP session. It also suggests that the
link between the TTM and ACP that Westley and
393
Research

Stage 1: I need to accept

Stage 2: I have to think
my own mortality first —
about my wishes — patients
patients may experience an ION
T seek information such as:
inability to discuss EoL PLA CO
N TEM NT what is organ donation?
PR E-CO EM When are people intubated?
PL
AT What is a DNR?
I O
N

RELAPSE

PREPARAT
Stage 3: I am ready to
discuss my wishes —

ION
patients may ask who
they need to speak to in
order to sign a DNR
MA
IN
TE
NA
NC ION
Result: I have completed E ACT
ACP — patients can ACP
revisit their EoL values
and decisions

Figure 3. Prochaska and Velicer’s (1997) Transtheoretical Model of Change and its
relationship to this study’s mental model. ACP, advance care planning; DNR, do
not resuscitate order; EoL, end of life.

Briggs (2004) proposed, but which they had not Future research could explore health profes-
tested in any population, is applicable to people sionals’ views on EoL topics and their thoughts
with COPD. around initiating ACP with patients.

Conclusion
As illness severity was not a good predictor of
readiness to engage in ACP, health professionals
need not suppose that patients with moderate
COPD have not given their EoL any thought.
Rather, people with COPD of severity MRC
3–5 can be engaged in discussion, as long as the
health professional remains sensitive to the
patient’s cues and stage of mental work. Ideally,
everyone with COPD would be assessed for
their readiness to engage in ACP throughout
their illness progression. This would help the
treating team to move the patient forward in
their degree of readiness and to effectively time
an EoL discussion.
With regard to implementing tools that
support EoL decision making, the present study
found that the DVD examined was able to meet
ACP needs in patients who had gone past stage 1
of the mental model. Therefore, clinicians need to
screen patients for readiness to discuss EoL prior
Acknowledgments
The authors would like to thank Dr Margaret Purden and
Dr Anita Mehta for their input during the study’s initial
stages. They would also like to thank Ms Émilie Gauthier
for her French translation assistance and Ms Linda
VanInwegen for designing the graphs and tables. Finally,
they would like to thank the participants of the COPD
clinic for taking the time to share their thoughts on such a
sensitive topic.
Funding
The dissemination of this research in Vancouver, Canada,
at the Canadian Respiratory Conference 2012 was funded
by the Jewish General Hospital and the McGill GREAT
Travel Award.
Declaration of interest
This study had no external sources of funding other than
those mentioned above. The authors have no conflicts of
interest to declare.
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