HEART FAILURE AND CARDIOMYOPATHY
Improving end-of-life care for patients with chronic heart
failure: ‘‘Let’s hope it’ll get better, when I know in my heart of
hearts it won’t’’
Lucy Selman, Richard Harding, Teresa Beynon, Fiona Hodson, Elaine Coady, Caroline Hazeldine,
Michael Walton, Louise Gibbs, Irene J Higginson
............................................................... ............................................................... .....
See end of article for
L Selman, Department of
Palliative Care, Policy &
College London School of
Medicine, Weston Education
Centre, Cutcombe Road,
London SE5 9RJ, UK;
Published Online First
7 March 2007
Heart 2007;93:963–967. doi: 10.1136/hrt.2006.106518
Background: Although chronic heart failure (CHF) has a high mortality rate and symptom burden, and
clinical guidance stipulates palliative care intervention, there is a lack of evidence to guide clinical practice for
patients approaching the end of life.
Aims: (1) To formulate guidance and recommendations for improving end-of-life care in CHF; (2) to generate
data on patients’ and carers’ preferences regarding future treatment modalities, and to investigate
communication between staff, patients and carers on end-of-life issues.
Design: Semistructured qualitative interviews were conducted with 20 patients with CHF (New York Heart
Association functional classification III–IV), 11 family carers, 6 palliative care clinicians and 6 cardiology
Setting: A tertiary hospital in London, UK.
Results: Patients and families reported a wide range of end-of-life care preferences. None had discussed
these with their clinicians, and none was aware of choices or alternatives in future care modalities, such as
adopting a palliative approach. Patients and carers live with fear and anxiety, and are uninformed about the
implications of their diagnosis. Cardiac staff confirmed that they rarely raise such issues with patients.
Disease- and specialism-specific barriers to improving end-of-life care were identified.
Conclusions: The novel, integrated data presented here provide three recommendations for improving care in
line with policy directives: sensitive provision of information and discussion of end-of-life issues with patients
and families; mutual education of cardiology and palliative care staff; and mutually agreed palliative care
referral criteria and care pathways for patients with CHF.
with a high risk of sudden death.8 9Patients with heart disease
report high prevalence of pain and symptoms, including pain
(63–80%), anxiety (49%) and breathlessness (60–88%), rates
similar to those for advanced malignant disease and AIDS.10
Both the SUPPORT study11and the Regional Study of Care of
heart failure in the last days and months of their life,12–15and
quality of life is known to be poor.16 17Studies have demonstrated
low patient/physician congruity regarding advanced care prefer-
ences,18–20and there is still a major lack of knowledge on how
patients with CHF regard death and dying.21
The mortality rates and prevalence of distressing and
apparently refractory symptoms make patients with CHF
appropriate for palliative care.22–27In the UK, CHF guidance21
stipulates good communication regarding prognosis and living
with uncertainty, and access to palliative care expertise for
symptom control and psychosocial support. However, despite
policy guidelines, there is a lack of evidence regarding the best
models of palliative and end-of-life care provision for patients
This study aimed to formulate guidance and recommenda-
tions for improving end-of-life care in CHF. The objectives were
to generate data on patients’ and carers’ preferences regarding
future treatment modalities, and to investigate communication
between staff, patients and carers on end-of-life issues.
espite improvements in the management of chronic heart
failure (CHF), mortality rates remain high: 40% in the
first year following diagnosis1 2and 45–75% at 5 years,3–7
Design and setting
The qualitative methodology utilised semistructured interview
data from four sources: cardiology, palliative care, patients and
family members at a teaching hospital in London, UK.
Specialist heart failure nurses (FH and CH) recruited patients
from the outpatient heart failure clinic and inpatient wards.
Inclusion criteria were having a clinical diagnosis of left
ventricular systolic dysfunction, with an echocardiogram
showing an ejection fraction of (45; having New York Heart
Association CHF functional classification III or IV; receiving
optimal therapy; having not yet been seen by palliative care
staff; and being able to communicate in English and give
informed consent. Eligible family members were primary
informal carers of patients with class III/IV CHF not yet been
seen by palliative care.
Staff were recruited from the cardiology and palliative care
teams. A purposive sampling frame addressed the role of
nurses/physicians and provision of community/inpatient/out-
The study was approved by the local ethics committee, and
written informed consent was obtained from the participants.
Abbreviation: CHF, chronic heart failure
A semistructured topic guide was drafted for each of the
samples. A constant comparative approach was utilised to
refine focus on the most relevant clinical and patient
perspectives, achieved through continuous transcribing and
review of successive transcripts. This permitted examination of
emergent themes in greater detail through subsequent inter-
views. In all, 20 patients and their families and 12 clinicians
were estimated to achieve data saturation.
Patient and carer schedule themes were (1) whether they
could imagine a time in the future when they would want
doctors to stop focusing on prolonging life and instead
concentrate on improving the quality of life; and (2) whether
they had talked to staff about prognosis, treatment options in
the event of a future exacerbation and about what to expect of
future disease progression. Patient and carer interviews were
conducted separately, at the patient’s home, outpatient clinic or
Staff schedule themes were (1) the palliative care needs of
patients with CHF and their families; (2) communication
regarding end-of-life issues; and (3) staff roles, referrals,
clinical challenges and appropriate intervention.
Interviews were conducted by LS, RH and MW, and ranged
from 20 to 90 min.
Interviews were tape recorded, transcribed verbatim and
imported into NVIVO V2 software (QSR International, http://
www.qsrinternational.com) for thematic analysis. Each tran-
script was subjected to line-by-line coding (LS), with a sample
reviewed by a second researcher (RH). Codes were reviewed for
internal consistency and to ensure that they reported sub-
stantive and independent themes (LS and RH). Each code
generated subcodes highlighting variation and discrepancy to
describe the breadth of data. Codes and subcodes were
tabulated and findings from each sample’s data compared.
The complete coding frame and sample comparison were
reviewed by the whole research group, to confirm the analysis
Forty-three interviews were conducted. In all, 20 patients
participated, 16 of whom were men (80%). The mean (SD) age
was 69 (10.6) years; the youngest patient was aged 43 years
and the eldest 83 years. Fourteen patients were New York Heart
Association class III, two were class III–IV and four were class
IV. The left ventricular ejection fraction ranged from 22.5 to 50,
with a mean (SD) of 34% (8.33%). All except one had been
previously admitted for CHF. There was a high rate of
comorbidities (eg, diabetes, cancer and epilepsy) and invasive
cardiac procedures. Eleven carers participated, who also
reported a high rate of morbidity.
Six clinicians participated from each specialty. One specialist
registrar, one consultant, two specialist inpatient nurses, and
two specialist community nurses were from palliative care,
three specialist nurses, two consultants and one specialist
registrar were from cardiology.
A wide range of end-of-life care preferences was reported across
both patient and carer groups (table 1). Patients’ responses
I’ll just have to wait and see for that [whether or not she
would ever want life-prolonging treatment to be stopped]…
There’s no use in my saying ‘‘Yes’’ and then later saying
‘‘No’’. (patient (henceforth P) 3A)
I wouldn’t sort of say, well, ‘‘Let’s keep on banging away at it
and let’s hope it’ll get better,’’ when I know in my heart of
hearts it won’t…. All they will do is prolong things, keep me
going as long as they can, but when I get to the stage where I
cannot walk, I cannot do anything else… I shall say ‘‘Right,
time to go,’’ and if society won’t help me that way I’ll do it
myself. (P 5A)
Oh no, no, keep treating me. Life’s sweet… I’ve got things to
do. I’ve got grandchildren to think of. (P 1A)
Poor mobility was the main deciding factor for patients who
said they would not want their lives to be prolonged in certain
Younger patients tended to focus on the hope of living with
controlled symptoms, whereas elderly patients were generally
more accepting of and prepared for death. Compare:
Well, I might think about [other approaches] when I’m a lot
older… At the moment I’ve got a lot of life in me. Well, I think
I’ve got a lot of life in front of me; well, I want a lot of life in
front of me. (P 2A, aged 59 years)
Basically things over which I have no control I refuse to worry
about, because I shall go to that great big postman’s sorting
office in the sky. Oh no, it don’t bother me in the slightest. (P
16A, aged 79 years)
Four elderly patients said they had accepted death and were
ready to die, with three preferring to die at home and one in
I’m not worried now… I mean, I’m 84 now… it doesn’t
worry me if I die tomorrow as far as that goes, as long as I’m
in here, I’m not in [the hospital]… Provided I’m at home I
don’t care if I go to bed tonight and don’t wake up no more.
There was a similar range of responses from carers when
asked if they would ever consider requesting treatment for the
patient that focused on improving quality of life, rather than on
prolonging life (table 1). Pain, quality of life and cognitive
ability were reported as the deciding factors—for example,
Well, you come to the point, don’t you, where you don’t
know whether anything else can be done… If you were
saying resuscitation or something like that—I don’t know that
you would want to do that in the situation he’s in. (carer
(henceforth C) 20B)
However, some family members felt they should not take
I always think that doctors know what they’re doing, ‘cause
they study all this, and I wouldn’t like to think that if I said
‘‘Stop doing this,’’ and something happened because the
doctors suggested doing it and I said ‘‘No’’—I wouldn’t want
that… So, that’s not my decision. (C 4B)
Only two carers reported having had recent conversations
withthe patient about his
—for example, regarding resuscitation in the event of an
964 Selman, Harding, Beynon, et al
Importantly, none of the patients or carers had discussed
end-of-life preferences with staff, and none appeared aware of
choices or alternatives in future care:
Interviewer: Has anyone asked you how you would like to be
cared for in the future, if you have a fall or another attack,
problems with your breathing or a minor heart attack?
Respondent: No, no… And I have no idea… I tell the boy
‘‘Take me to the hospital’’ that’s all... (P 10A)
Often, in fact, the interviewer’s questions regarding end-of-
life preferences were interpreted as questions about euthanasia
or suicide rather than about palliative care.
Patient and carer experience
Patient, carer and staff data indicated a high prevalence of
psychological morbidity among patients. Carers, in particular,
reported that patients often experienced anger, frustration,
anxiety and depression. Dread, guilt and anxiety were common
among carers, five of whom reported fearing the patient’s
deterioration or death:
Can it make him seriously ill? I know he’s ill, but can it make
him ten times worse than what it is? Could he end up dying,
basically? (C 2B)
Everything else I’m fine with, it’s just worry [laughs, begins to
cry]… I just dread the day when anything does happen,
that’s what I worry about, ‘cause it will, I know it will, I just
dread the time it does. (C 4B)
Discussions of patients’ end-of-life preferences and thoughts
or feelings about dying were a source of anxiety for carers, and
were often not discussed:
There are things that I tell him we’re not going to discuss, one
of which is the details about what’s going to happen in terms
of money and things like [that]… I don’t want to know
anything, I don’t want to discuss that. (C 22B)
Interviewer: Do you ever talk about that [not worrying about
death] with your daughter?
Respondent: Yeah… I tell them, they know… They say
‘‘Don’t be stupid.’’
Interviewer: So they don’t like to talk about that?
Respondent: No. She says ‘‘The way you talk, you want me
to kill you.’’ (P 4A)
Barriers to improving end-of-life care
N Disease specific
Staff reported that the unpredictable disease trajectory prevents
discussion of end-of-life issues and future care options:
In terms of speaking about death and dying issues with
[CHF] patients it’s much more difficult really, because
again… it’s difficult for us to [know] with too much certainty
that this is what’s going to happen. (palliative care staff
(henceforth PC) 3)
Both patients and staff reported on the public perception of
CHF as relatively benign in comparison with cancer:
[Discussing end of life issues] can be very difficult, because
many of them may not have associated it with, or thought
about, their ultimate death or dying phase, ‘cause you can
live with it for so long. (PC 6)
N Specialism specific
Cardiac staff confirmed that issues such as future care in the
event of an exacerbation, end-of-life preferences, advanced
directives or palliative care are rarely raised with patients:
They can talk about death if that’s what they want to do…
No, I wouldn’t initiate that with a patient, but I would allow
them the space to, you know, talk about it if that’s what they
want to talk about. (cardiac staff (henceforth Cardiac) 4)
Cardiac staff reported difficulty handling patient denial,
discussing poor prognosis and dealing with emotional involve-
ment with patients and their families. Both specialties
recognised that cardiac staff often lack the communication
skills necessary to handle sensitive issues such as prognosis and
With cancer patients… if the active treatment is no longer
considered appropriate then we really would insist on an
oncologist spelling it out, and perhaps oncologists are
maybe better trained to do it. With a cardiologist maybe it is
very difficult to say, you know, ‘‘I’ve done all I could for
you.’’ (PC 1)
End-of-life preferences and influencing factors
End-of-life preferences: patients
Influencing factors for patients
(where given) End-of-life preferences: carers (n=11)
Would want treatment to prolong
life stopped in certain
Would always want treatment to
prolong life continued (n=4)
Couldn’t say either way (n=2)
Avoided the question (n=2)
Could see both points of view
Preparing for death, though
wanting to live (n=1)
‘‘No one can prolong life, only
Ability to function physically (n=1)
Frequency of hospitalisation and
wife’s situation (n=1)
Quality of life and mental ability
Would want treatment to prolong life
stopped in certain circumstances (n=5)
Could not decide now for the future (n=3)
Avoided the question (n=1)
Up to the clinician (n=1)
Up to the patient, although carer may over-
ride his decision (n=1)
Improving end-of-life care965
Cardiac staff identified their training needs, including more
awareness of future care options. Three cardiac staff also
reported that cardiologists might concentrate on the curative
and technological aspects of their work while neglecting to
meet the needs of patients in their end stage:
Cardiology is a very dynamic subject and you can get a
whole load of consultants, dare I say it, who are interested in
all the ritzy things of putting stents in arteries and myocardial
infarction, and that’s saving lives, so actually when you’re at
the termination of life they’re not so interested… They’d
rather get on with the living, not the dying, do you
understand? (Cardiac 1)
Mutual education of cardiology and palliative care staff was
recommended by both specialties, with the aim of providing
generalist care with support from and access to specialist
palliative care services when necessary.
Shared care rather than handing over care… should be the
model for non-malignant diseases… It’s not right for
palliative care to take over these specialised areas com-
pletely, but to do sort of shared care and then you share your
own skills and the patient gets a better deal. (PC 5)
Breaking bad news and discussing end-of-life issues in a
supportive way were specific suggested training needs for
cardiac staff. Palliative care staff suggested that they would
benefit from training in CHF symptom management. Members
of both teams identified the need for referral criteria and care
pathways to facilitate joint working. The findings are modelled
in fig 1.
Despite poor prognosis for CHF, patients and carers reported
very little or no discussion with staff which directly addressed
their concerns in this area, and this appeared to affect their
psychological morbidity. This supports the findings of other
studies.17 18 28 29Patients had rarely discussed their thoughts and
feelings regarding death and dying with family members. The
silence around end-of-life issues was a source of fear and
anxiety for both patients and carers, and points to a major gap
in services currently provided. However, these novel, integrated
data provide guidance for improving care in line with policy
Although patients with CHF and their carers are uninformed
and not consulted about their end-of-life preferences, the
willingness of participants to discuss their preferences in this
study highlights the feasibility of raising these issues.18This
may help reduce the fear and anxiety identified among both
The difficulty of prognosticating in CHF, commonly recog-
nised in the literature,30 31was found to be a barrier to
discussing end-of-life issues. As Stewart and McMurray state,32
this can lead to ‘‘prognostic paralysis’’ and prevarication in
respect to end-of-life discussions. Another major barrier relates
to the reluctance of cardiac staff to recognise the need for and
initiate such discussions, and their need for training in how to
conduct sensitive conversations addressing future planning
with patients and carers. This supports the findings of other
We make the following three feasible and acceptable
recommendations that are informed by patient, family and
clinical perspectives (box 1).
1. Sensitive provision of information and discussion of end-
of-life issues with patients and families, early in the course
of the disease trajectory, owing to the high incidence of
sudden death in this patient group.8 9
Mutual education of staff. Training is imperative if cardiac
staff are to accommodate diverse patient and family care
preferences such as those found in this study, and to
handle sensitive discussions of prognosis in a way that
allows patients to ‘‘hope for the best, and prepare for the
Mutually agreed palliative care referral criteria and care
pathways for patients with CHF. Referral criteria and care
pathways would clarify staff roles, provide routine assess-
ment of the need for palliative care, facilitate referral to
palliative care services when necessary and enable flexible
care, including preferred place of death.
There are several limitations to this study. The setting has a
specialist palliative care team on site, local community teams
and hospices, therefore this population may be relatively well
served. There is likely to have been sample bias, because of less
advanced patients being recruited, although interviewing at
home and in wards and clinics reduced this bias. Although not
every patient had a family member, and not all of them
consented to participate, the analysis showed saturation of
clinician data regarding end-of-life care.
Integration of patient, family and
966 Selman, Harding, Beynon, et al
Through integration of data from multiple sources, the Download full-text
triangulation of findings has enabled a perspective on end-of-
life care for patients with CHF and families that, while being
broadly supportive of previous studies, is the first to investigate
concurrently clinical and patient views and experiences.
Further research is necessary to develop specific interventions
and care pathways, and to evaluate outcomes for patients and
families, including preferred place of death, pain and symptom
control, spiritual and psychological well-being, and bereave-
We thank the Guy’s & St Thomas’ Charitable Foundation for the Service
Development Grant to undertake this study. We also thank members of
the Project Advisory Group, who commented on the study protocol, and
the patients, families and staff who participated.
Lucy Selman, Richard Harding, Michael Walton, Irene J Higginson,
Department of Palliative Care, Policy & Rehabilitation, King’s College
London School of Medicine, Weston Education Centre, London, UK
Teresa Beynon, Fiona Hodson, Elaine Coady, Caroline Hazeldine, Guy’s
& St Thomas’ NHS Foundation Trust, London, UK
Louise Gibbs, St Christopher’s Hospice, London, UK
Funding: This work was funded by Guy’s & St Thomas’ Charitable
Competing interests: None.
Ethical approval: This study was approved by the St Thomas’ Hospital
Research Ethics Committee.
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Box 1: Recommendations for clinicians
N Sensitive discussion of end-of-life issues and prefer-
ences with patients and carers
2.Mutual education of staff
N Communication skills training for cardiac staff
N Training in management of chronic heart failure (CHF)
symptoms for palliative care staff
N Aim: generalist care with support from and access to
specialist palliative care
3.CHF referral criteria and care pathways
N Clarification of specialist roles and when to refer
N Routine assessment of the needs of palliative care
N Flexibility of care, including place of death
Improving end-of-life care967