Palliative Medicine 2006; 20: 603
609

Survey of specialist palliative care and heart failure:

September 2004
Louise ME Gibbs St Christopher’s Hospice, London, Ajeet K Khatri The National Council for Palliative Care,
London and J Simon R Gibbs National Heart and Lung Institute, Hammersmith Hospital and Imperial College,
London

Aims: To describe English specialist palliative care (SPC) services’ provision for, and attitude
to, heart failure patients, and to identify developments of particular interest or expertise in
this area. Method: Postal survey of all lead consultants of English SPC services, September
2004. Results: Of 397 services, 233 replied (response rate 59%); 222 (95%) thought SPC
had a role in severe/end stage heart failure, while three (1%) did not. A total of 197 services
(85%) accepted heart failure patients, 26 (11%) did not. The most common reasons for not
accepting heart failure patients were lack of resources or beds, implications for staff training
or an organizational decision. The mean number of heart failure patients currently under a
service was 2.2, but 15 had more than five (maximum 53). Fifteen services (6%) had
specific referral criteria for heart failure patients, including recurrent hospital admissions
without symptomatic improvement, inappropriateness of further hospital admission and
severity of heart failure. Twelve services (5%) had or were developing treatment guidelines
for heart failure: five were end of life pathways, three covered breathlessness management
and three were symptom control guidelines. Some 137 services (59%) described local
collaborative initiatives between SPC, heart failure services and primary care, such as
mutual education, joint working and working groups. A number of models of joint working
practices were described in detail. Twenty-seven (12%) knew of national initiatives.
Conclusions: The current situation of SPC services in England for patients with heart failure
varies widely. One in 10 SPC services in this audit did not accept heart failure patients. Few
have developed services of significant size. Local collaborative initiatives are common.
Specific referral criteria and symptom control guidelines have been developed. Their role in
promoting good palliative care in patients with heart failure remains unclear. Better
dissemination of practical knowledge gained by these initiatives could significantly improve
the provision of SPC services to heart failure patients. Palliative Medicine 2006; 20: 603

609

Key words: advanced heart failure; end of life; hospices; palliative care; terminal care

Introduction that the level of need in heart failure patients, in terms of

symptomatology and social, psychological and spiritual
Specialist palliative care (SPC) for people with diseases need, is at least equivalent to cancer.4
10 Despite this,
other than cancer, motor neurone disease and HIV/AIDs referral on to support services beyond the general
has been on the national agenda for a decade.1 Initial practitioner and hospital doctor (such as district nurses,
fears of ‘opening the floodgates’ and overwhelming SPC social workers, physiotherapists or SPC) is lower than for
services with referrals of patients with diseases other than cancer patients.11
cancer have proved unfounded. Hospice information The cardiac community have started to take this
service statistics show that, overall, the percentage of issue on board. The Coronary Heart Disease National
those receiving SPC who do not have a cancer diagnosis Service Framework of April 2000 and the NICE
remains around 5%.2 Management of Heart Failure guidelines of 2003
Heart failure is a disease that has a survival akin to each comment on palliative care.12,13 Palliative care
large bowel or ovarian cancer.3 It causes approximately is on the curriculum of at least one of the major heart
60 000 deaths per annum in the UK. Studies have shown failure nurse education programmes (Principles of care
management for the patients with chronic heart fail-
Address for correspondence: Dr Louise Gibbs, St Christopher’s ure: module of BSc in specialist nursing, Glasgow
Hospice, 51
59 Lawrie Park Road, Sydenham, London, SE26
6DZ, UK. Caledonian University). At the time of this survey,
E-mail: l.gibbs@stchristophers.org.uk there were no recommendations concerning the prac-
# 2006 SAGE Publications 10.1177/0269216306071063
604 LME Gibbs et al.

tical implementation of palliative care in heart failure and 164 services did not reply (total 397), giving a
patients. response rate of 59%.
Anecdotally, some SPC services are known to have
developed particular interests in heart failure,14
17 but Is there a role for SPC services in heart failure
little has been published about these services. This survey management?
aimed to describe in more detail the current state of SPC Some 222 services (96%) thought that SPC services had a
services for patients with heart failure in England and to role in providing care for patients with severe/end stage
identify development of particular interest or expertise in heart failure. Three (1%) did not; eight (3%) did not reply
this area. to this question. A total of 197 services (85%) currently
accepted referrals for patients with heart failure as their
main diagnosis. Twenty-six (11%) did not; 10 (4%) did
Methods not reply to this question.
Reasons given for refusing or restricting access to SPC
for heart failure patients are given in Table 1. The most
A survey of lead practitioners of adult SPC services in
common reasons were lack of resources, implications for
England was conducted in September 2004. Adult SPC
staff training in heart failure and limited bed availability.
services in England, excluding those in cancer only
hospitals, were identified from the Hospice Directory
Numbers of heart failure patients under SPC
2004.18 Many services are listed separately, but are part
Of the 233 services, 225 gave details of their service
of a wider organization based at multiple sites. In
components, ie, whether hospice inpatient, community or
circumstances where identifying whether services were
day care, hospital inpatient or out patients (Table 2). The
linked or separate was difficult, each listed service was
mean number of patients whose main problem was heart
contacted. Letters were sent to the consultant or lead
failure, currently under a SPC service was 2.2, with a
clinician of each identified separate service, inviting them
range of 0
53. Fifteen of 233 services (6%) had five or
to complete a questionnaire about SPC for patients with
more patients. Table 2 shows a detailed breakdown of
heart failure. No reminders were sent to non-responders.
results for inpatient, day care, community and hospital
Clinicians were given four months to return the ques-
service components. In total, 501 patients with heart
tionnaire. Simple descriptive statistics were used to
failure were identified as under a SPC service on the day
present the data.
of the survey.
The chair of the local ethics committee confirmed that
ethics committee approval was not needed for this survey.
Referral criteria
Specific referral criteria/guidelines for patients with
heart failure were in use by 15 services (6%), four services
Results providing a copy of them. A further 20 (9%) stated
that these were not necessary because their general
A total of 452 letters and questionnaires were sent out. referral criteria were adequate for all diagnoses. Many
Many services were, in fact, linked or part of a larger services provided details of their general referral criteria,
organization, and sent back one combined reply (56/452). which were very similar: patients should be suffering
This was counted as one reply. One consultant sent back from advanced/progressive, life threatening/life limiting
two replies for services that had not been identified as disease; patients or their families should have symptom
being distinct. In total, 233 questionnaires were returned control and/or physical/psychological/emotional/social/

Table 1 Reasons given for refusing or restricting access to SPC by heart failure patients

Heart failure patients Heart failure patients Acceptance status Total

not accepted (n /26) accepted (n /15) unknown (n /10) (n /51)

Lack of resources 20 12 2 34
Implications for staff training 15 7 1 23
Limited bed availability 10 3 2 15
Specific organizational position 4 1 1 6
None/few referred 1 3 1 5
Cardiac professionals can do this 2 1 0 3
Our lack of expertise 1 0 0 1
Other 2 1 0 3
Ethical reasons 0 0 0 0
 Survey of specialist palliative care and heart failure 605

Table 2 Numbers of patients with heart failure under SPC on day of survey

Number of specific SPC Mean number of Range in number of

services (Total answers to this patients with patients with
question/225/233) heart failure heart failure

(i) SPC inpatient 127 0.4 0
20

(ii) SPC home care 140 1.3 0
12
(iii) SPC day hospice 128 0.8 0
39
(iv) Hospital inpatient support 154 0.4 0
4
(v) Hospital outpatient review 110 0.6 0
6

spiritual needs, which are complex, poorly controlled and of dyspnoea, pain, constipation, depression, insomnia,
require SPC input. Table 3 combines and summa- anxiety, anorexia, nausea and agitation. There appeared
rizes the heart failure specific referral criteria/guidelines to be no relationship between the presence of specific
from the 15 services. The two services that included treatment guidelines or pathways and having five or more
medical information, such as echocardiography results or patients with heart failure currently under the service
blood tests, cited the criteria for referral to palliative (only one of the 12). Four of the services who had (or
care from an article by Ellershaw and Ward.19 One other were developing) specific treatment guidelines or path-
service stated a useful trigger phrase for referrers
‘A ways also had heart failure specific referral criteria.
patient who is sick enough that dying in the next year
would not be a surprise’
quoting the Macmillan Gold
Standards Framework (a standardized organizational Collaborative initiatives
framework of multi-professional care developed for the Of 233 services, 137 (59%) were aware of local colla-
palliative care needs of cancer patients).20 There ap- borative initiatives between SPC, heart failure services
peared to be no relationship between the use of heart and primary care.
failure specific referral criteria and having five or more One area of collaboration was mutual education.
patients with heart failure currently under the service Educational initiatives described commonly involved
(only one of the 15). SPC professionals teaching cardiac and community/
primary care health care professionals and/or heart
failure professionals (mainly nurse specialists) teaching
Treatment guidelines and pathways SPC professionals, often as ‘one off’ sessions. Larger
Specific treatment guidelines or pathways for patients educational events had been organized by primary care
with heart failure were in use or being developed by 12 or hospital trusts (four), or at cardiac and cancer network
services (5%). Five of these were end of life pathways. level (one), the latter aiming to promote interest and
Two were breathlessness management programmes, akin establish a working group.
to pulmonary rehabilitation. One was a guideline for the The second area of collaboration was in terms of
use of opiates for breathlessness. Three services were specific service developments. Of 233 services, 62 (27%)
currently writing symptom control guidelines. One gave stated that local specialist heart failure services had
the title ‘Toptips’ but did not elaborate. In addition, two an interest in end of life care. Of 233 services, 50
services stated that certain heart failure treatments could (21%) stated that local SPC services had an interest in
be continued under inpatient SPC (both mentioned heart failure. Twelve respondents mentioned local or
intravenous furosemide). One service provided a copy regional/network task forces or steering/working groups.
of its draft treatment guidelines, which consisted of a one A further 12 respondents mentioned specific projects,
page table with brief guidance covering the management ranging from respite/hospice at home services focusing

Table 3 Heart failure specific referral criteria for specialist palliative care (n /15 services with specific criteria already in use)

n /15 (%)

First three points covered by ‘general criteria’:

Specific detail regarding severity and/or complexity of patients’ symptom control needs 10 (67)
Specific detail regarding severity and/or complexity of patients’ other needs (psychological, emotional, spiritual, social) 10 (67)
Specific detail regarding severity and/or complexity of carers/families’ needs (including high bereavement risk) 9 (60)

Heart failure specific criteria:

Recurrent hospital admissions with decompensated heart failure, usually without symptomatic improvement 11 (73)
Symptomatic severity of heart failure (NYHA functional classes III and/or IV) 10 (67)
Lack of further treatment options making hospital admission inappropriate 9 (60)
Specific further medical information (eg, echocardiogram results, blood results) 2 (13)
606 LME Gibbs et al.

on non-malignancy, through single nurse appointments Of 233 services, 27 (12%) were aware of a national
to focus on non-malignancy, to complex projects of initiative/s. Specific national initiatives/bodies were: na-
collaborative mutual education and support, joint work- tional study days, the Liverpool Care Pathway (LCP),
ing and service provision. The latter all involved heart Pursuing Perfection, the British Heart Foundation, the
failure clinical nurse specialists. Six of these 12 respon- Coronary Heart Disease National Service Framework
dents submitted documents describing their projects, and the NICE heart failure guidelines.
which included some of the following: SPC contact
details, symptom control guidelines, service use statistics,
referral criteria and joint working practices. Discussion
A number of models of joint working practices were
described. The three broad types of model are summar- The evidence for symptom control, psychological, emo-
ized in Table 4. Two respondents described similar joint tional and social need in heart failure is at least as
initiatives with hospital cardiology colleagues, based compelling as in cancer. The paucity of published
around mutually agreed referral criteria and initial evidence for the benefit of SPC in heart failure makes
assessment by a palliative care consultant. The SPC planning response to that need difficult.
professionals’ expertise in managing these patients gra- This survey has confirmed that wide variations in SPC
dually increased, so that more of their cardiac manage- practice with regard to heart failure exist around the
ment could be taken on by SPC, even resulting in the use country. At one extreme, more than one in 10 of the SPC
of intravenous furosemide with daily weighing and services who participated in the survey would not take on
regular blood tests in one hospice. A second model was a heart failure patient at all, whatever their demonstrated
that of SPC training and supporting heart failure clinical need. At the other extreme, more than one in five SPC
nurse specialists as the key supportive care workers. services expressed a particular interest in heart failure.
Details provided about these initiatives were scanty. The main barriers to accepting patients with heart
Types and levels of training and support in palliative failure were stated to be issues of SPC resources and
care were varied. Close collaborative working, with SPC beds, closely followed by concerns over the implications
of training staff in an unfamiliar area. Evidence from
offering informal telephone advice, heart failure nurse
those services that do accept heart failure patients
attendance at multi-disciplinary meetings to discuss
suggests that these barriers are surmountable. As such,
difficult cases, joint assessments or ‘full’ SPC referral,
achieving a state of 100% of SPC services accepting heart
were described. One service had a SPC nurse spending
failure patients seems possible. There was very little
one day a week working alongside the community heart support for the suggestion that cardiac services should
failure nurses, who already had substantial training on be expected to deliver all palliative care for heart failure
palliative care courses. patients.
In a third model, in addition to the collaborative The good response rate to this survey suggests that
working described above, a hospice worked with its local interest within SPC is high, and many respondents
heart failure nurses, allowing the hospice day centre to be requested to be kept informed of any new knowledge
used for a regular programme of heart failure patients or developments. Nearly 60% already knew of some local
(and their carers) education and support. collaboration in this area. In contrast, the mean number

Table 4 Three models of joint working practice described by respondents

Model Initiators Site of initial Process Outcomes/comments

patient contact

1 Joint SPC/hospital Initially hospital SPC consultant assessed referrals from Referrals deemed to be appropriate.
cardiology initiative in/out-patient based cardiology consultant/heart failure nurse in Numbers not over-whelming. Mutual
hospital/hospital outpatients/community. increase in knowledge and skills.
Patients referred on for SPC community/day
hospice/inpatient services as appropriate.
2 Cardiology (mainly Hospital/ Heart failure nurses acting as key supportive Initial training and some experience in
heart failure nurses) community and palliative care workers for patients. palliative care required. Continuous
support described by some
respondents. One respondent
described joint working one day a week.
3 Joint SPC/Primary Hospice day Heart failure patient support group (six Popular with patients and professionals.
Care Trust cardiology centre structured education sessions), run by Efficient use of professional time.
initiative heart failure nurses, held in hospice day Future of group/discharge policy to be
centre with access to full SPC services. discussed.
 Survey of specialist palliative care and heart failure 607

of patients currently under a SPC service was 2.2, Delivering this service has required both extensive initial
suggesting that local interest had frequently not trans- training and regular, frequent and ongoing joint working
lated into many patient referrals to SPC. It is recognized with an experienced community palliative care nurse.
that the slow progression of heart failure discourages With this model, the numbers of referrals on to full SPC
health care professionals from referring patients to SPC services was quoted as low. These extreme models, of
and patients and their carers from accepting it.21 It is not heart failure services delivering palliative care, or SPC
known what the appropriate level of referral to SPC is for services delivering relatively acute cardiac care, both
any disease, and heart failure is no exception. required a high level of training and support from the
The survey did not reveal the extent to which heart other service. Model 2
heart failure nurses becoming
failure patients were receiving palliative care from general the key supportive care workers
requires SPC involve-
or cardiac professionals, augmented by training, support ment in terms of education. It is also likely to require
or joint working practices from/with their SPC collea- ongoing flexible working between the two specialties,
gues. It did collect a few examples of different models of with a range of services, including telephone advice,
joint working practice that are in current use around difficult case discussion and joint assessments, as well as
England. No evidence currently exists to define which ‘full’ SPC referral. Model 3, the use of a hospice day
models deliver effective and cost effective palliative care, centre as the site for a heart failure support group and,
are feasible on a large scale and are sustainable. Such therefore, a specific bridge between cardiac and SPC,
data is likely to be necessary in order to secure a funded may be reproducible elsewhere. Issues of patient numbers
future for palliative care in heart failure, be it general or and discharge arrangements from the hospice day centre
specialist. may need to be addressed. The survey did not provide
The three models described in more detail reveal enough detail to recommend any particular model as a
fundamentally different care planning. These models blue print for others to follow.
had clearly been shaped as much by local relationships The areas of local initiatives, education, joint working
and NHS/voluntary sector configuration as patient need. practices, referral criteria and written guidelines were
At one end of the spectrum, model 1 involved SPC inter-related. Whilst a majority of services (59%) were
starting by accepting patients with heart failure accord- aware of local collaborative initiatives between SPC,
ing to jointly agreed referral criteria. Both services that heart failure services and/or primary care, the proportion
described this model had started it as a hospital-based involved in such initiatives was much lower. A small
initiative, but the service had grown and developed out minority had matured from fledgling beginnings, with the
into hospice and/or community. As interest and experi- development of a combination of referral criteria, treat-
ence increased, more heart failure management had been ment guidelines, steering/working groups and new mod-
taken on by SPC, even to the extent of fluid overload els of care. This ‘pyramid’ of service interest and
being managed in one SPC inpatient unit with intrave- development is depicted in Figure 1.
nous furosemide. A service described under model 2 It is interesting that there was no apparent relationship
had a community specialist heart failure service reaching between a high number of heart failure patients (/5)
out to deliver a high level of supportive and palliative currently under a services, and the use of either heart
care itself. This service has published its experience.22 failure specific referral criteria or specific treatment

Figure 1 Pyramid of SPC interest in, and involvement with, heart failure patients.
608 LME Gibbs et al.

guidelines. Drawing any conclusion from this is not with clear particular heart failure interest. This interest
possible from this survey. We speculate that referral does not mean that these services now have a high
criteria or treatment guidelines help ensure appropriate number of heart failure patients on their books. Local
referral without overwhelming services, but we also collaborative initiatives are common. Different models of
recognize that a lack of specific referral criteria does joint working described could act as a useful resource for
not appear to be a barrier to developing a bigger service other services. The effectiveness, cost effectiveness and
for heart failure patients. Whether specific referral sustainability of these different models are not known.
criteria for individual diseases should, therefore, be The role for disease specific referral criteria or treatment
encouraged as one means of opening up services to this guidelines in promoting good palliative care in patients
patient group needs further investigation. with heart failure is also unclear.
Heart failure specific treatment guidance, including
symptom control and end of life care, was in use by only a
handful of services. The LCP,23 originally developed for
patients dying from cancer, is widely known to be used Acknowledgements
for other dying patients in a variety of settings. A specific LG, AK and JSRG are all members of the NCPC
LCP project, researching the use of the LCP in heart Circulatory and Respiratory Policy Group. The authors
failure, is ongoing. In this project, the generic pathway is would like to thank Lisa, Alex and André Lewis for their
being used, with some minor additions covering cardiac administrative support.
specific areas, such as turning off internal cardiac
defibrillators. Four different symptom control guidelines
were identified in this survey. Since this survey was
completed, Cheshire and Mersey cancer and cardiac
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Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.