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238 Chapter 16
Box 2: Summary of age attuned hospice care [19].
Level 1: Clinical interactions and support for people, their families and carers
Use specific assessment tools, prioritise use of advance care plans capturing current goals and future wishes, regular review, and
reflect small incremental changes, recognise family carers as experts in care as well as recipients of care, provide targeted education
programmes for the workforce.
Level 2: Partnership across the system
Understand the population and those likely to die in next few years, proactively develop new relationships with other care
providers, jointly develop referral triggers and pathways, think where you can most make a difference, work together across
professional and service boundaries to engage with older people to explore their needs and requirements for care.
Level 3: Supporting societal change
Confirm the value of older people within the service you provide. Use images, stories, and quotations that reinforce their central
place in current and future care, encourage people to tell stories about their life and their legacy; encourage others simultaneously
to listen and reflect on what they hear with the intention of amending and expanding their life view, find opportunities for
intergenerational activity and care, focus strong reciprocal learning or attachment, encourage community participation in care,
provide training and support to ensure people feel confident in their roles, and know where to go if they face something they feel
unprepared for, create learning networks.
Box 3: Bromley care co-ordination centre [81].
● 2200 referrals (55% from GP 26% from Hospital 19% other)
● Of those who have died 70% have died in their own home/care home
● Average age of patients referred 86 years
● Non-cancer to cancer diagnoses ratio=85%: 15%
● 86% of patients have no other current healthcare intervention apart from the GP and occasionally a social care agency/provider
● 39% of patients live alone
Admiral Nurses are specialist dementia nurses who use
a case management approach to support people facing
dementia using range of psychosocial, educational, and
practical approaches to support families living with
dementia [82]. It is the only defined model of case
management that integrates health and social care for all
members of the family unit affected by dementia in the UK
[83]. Emerging evidence reports that the person-centred
approach benefits those living and dying with dementia
through specialist knowledge and information, holistic
assessment, focussing on the experience of carers, support-
ing them with decision making, and helping to anticipate
prevent and avert crisis [9].
Hospice Enabled Dementia Care guidance from the
national charity Hospice UK stresses the important
requirement for
palliation of symptoms and provision of comfort for
anyone with dementia regardless of anticipated prognosis.
[84 p. 3]
The call for action for hospices included a corporate
commitment to engage with the agenda of dementia care,
efforts to establish new partnerships, creativity in the pro-
vision of care, and services to meet the specific needs of
people with dementia, an evidence-based approach to care
and the care environment, investment in training of staff
and volunteers [84]. Since its publication there has been an
increase in hospices in the UK providing services to enable
people with dementia to live and die well as well as estab-
lishment of integrated communities of practice (knowledge
networks).
Conclusion
This chapter has explored the evidence for the palliative
and end-of-life care needs of people living with frailty,
dementia, and multi-morbidity. Examples of practice have
been suggested which focus on the specific needs of people
living and dying with these conditions as well as
https://t.me/med1917
Frailty, Dementia and Multi-Morbidity 239
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of care preferences following acute illness: a mixed methods
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https://t.me/med1917
Handbook of Palliative Care, Fourth Edition. Edited by Richard Kitchen, Christina Faull, Sarah Russell and Jo Wilson.
© 2024 John Wiley & Sons Ltd. Published 2024 by John Wiley & Sons Ltd.
242
17
Palliative Care in Advanced
Heart Failure
Amy Gadoud
Introduction
Heart failure (HF) is a global problem with a prevalence of
38 million worldwide, a number that is increasing with the
ageing population despite advances in cardiovascular
medicine and surgery [1]. It is the most common diag-
nosis of patients admitted to hospital over 65 years in
high-income countries [1]. In the UK there are as many
people with advanced HF as there are with the four most
common cancers combined [2]. As risk factors for cardio-
vascular disease in low- and medium-income counties
increase, the prevalence of HF is also increasing in these
settings [1].
The prognosis following a diagnosis of HF remains
poor and lags behind other serious conditions such as
cancer [3]. These patients have a significant symptom
burden, poor quality of life, and other palliative care
needs, often over a longer period than for patients with
cancer [4, 5]. The economic cost of HF, largely driven by
unscheduled hospital admissions, is considerable [6–8].
National and international guidance calls for the
integration of palliative care alongside other health ser-
vices for patients with HF [9–12]. But despite these recom-
mendations, the palliative care needs of many patients with
HF are not recognised or well managed [13].
This chapter will address both the common physical
symptoms and psychosocial distress that patients with
advanced HF face and will examine the barriers that often
limit access to quality symptom management and palliative
care for these patients living with advanced HF. A case study
is used to integrate this approach into a patient’s journey.
Definition and Characteristics
The European Society of cardiology defines HF as a
clinical syndrome consisting of cardinal symptoms of
breathlessness, ankle swelling, and fatigue that may be
accompanied by physical signs (e.g. elevated jugular
venous pressure, pulmonary crackles, and peripheral
oedema). It is due to a structural and/or functional
abnormality of the heart that results in elevated intracar-
diac pressures and/or inadequate cardiac output at rest
and/or during exercise [14].
The aetiology of HF varies according to geography. In
Western-type and developed countries, coronary artery
disease (CAD) and hypertension are predominant factors
[14]. Rheumatic heart disease remains a major cause of HF
in developing countries; as countries undergo socio-eco-
nomic development, the epidemiology of HF becomes
increasingly similar to that of Western Europe and North
America [15].
The severity of HF is useful to classify, such as described
by the New York Heart Association (NYHA) [16], and HF
has been divided into distinct phenotypes based on the
measurement of left ventricular ejection fraction (LVEF).
The rationale behind this relates to the original treatment
trials in HF that demonstrated substantially improved
outcomes in patients with reduced LVEF. However, HF
spans the entire range of LVEF (a normally distributed
variable), and additionally measurement by echocardiog-
raphy is subject to substantial variability. The European
Association of Cardiology use the following classification
of HF (Box 1).
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Palliative Care in Advanced Heart Failure 243
The Growing Need
In developed countries, the age-adjusted incidence of HF
may be falling, presumably reflecting better management
of cardiovascular disease, but due to ageing, the overall
incidence is increasing [14]. HF is a common condition
with a prevalence of 1 to 2% in the developed world and
increasing to greater than 10% in elderly cohorts [17, 18].
As studies only usually include recognised/diagnosed HF
cases, the true prevalence is likely to be higher [14].
Studies from several European countries and the
United States (US) have shown that HF hospitalisation
rates peaked in the 1990s, and then declined [14].
However, in a recent study of incident HF conducted bet-
ween 1998 and 2017 in the United Kingdom (UK), first
hospitalisations increased by 28% for both all-cause and
HF admissions [19] during the study period. These
increases were higher in women, perhaps related to higher
comorbidity rates.
During 2000–1, there were 84,151 admissions for people
with HF in the UK [20]. This had risen to 141,566 UK
admissions in 2009 [21]. This is estimated to represent 2%
of all NHS inpatient bed-days and 5% of all emergency
medical admissions to hospital. Due to population growth,
ageing, and the increasing prevalence of comorbidities, the
absolute number of hospital admissions for HF across
Europe is expected to increase considerably in the future,
perhaps by as much as 50% in the next 25 years [14].
It is estimated that the total annual cost of HF to the NHS
is around 2% of the total NHS budget: approximately 70%
of this total is due to the costs of hospitalisation [22]. The
average number of admissions in the last six months of life
for patients with HF is two, but there is wide variation [23].
Prognosis due to HF is poor. The five-year prognosis is
worse than that for many cancers [24]. There have been
improvements in mortality due to improved medical
management. Implantable cardioverter-defibrillator (ICD)
placement reduces the risk of sudden death and as its use
becomes more common, more patients will develop pro-
gressive advanced HF [25]. Prognosis remains poor and
data from a Canadian study assessing prognosis of patients
newly admitted with HF still showed a 5-year mortality of
68.7% (median survival 2.4 years) and in those with an
ejection fraction of less than 30% there was a median
survival of only 3 months [26].
Barriers and Challenges in Integrating
Palliative Care for Patients with HF
Disease Trajectory “Prognostic Paralysis”
Different disease trajectories have been described for can-
cer, single organ failure, and general frailty [27]. These are
important on a population level and for understanding the
natural history of these diseases. There is much uncertainty
when dealing with prognostication at the end-of-life which
has resulted in some clinicians feeling powerless and unable
to act, described as prognostic paralysis [28]. Population
level studies have described the HF trajectory as gradual
decline, punctuated by episodes of acute deterioration, any
of which may result in death or recovery. Death is described
as seemingly sudden compared with the more predictable
terminal phase seen with some cancers [27]. However,
there is much inter-patient variability and so this “typical”
disease trajectory may be less helpful with the specific
individual patient seen on the ward or in the clinic [29].
In contrast to cancer where palliative care may be wel-
comed alongside treatments that may alter the natural his-
tory of the illness to a similar trajectory to a chronic illness
interspersed by acute deteriorations, there appear to be
more barriers to integrating palliative care in HF according
to patient need.
Recognition of Advanced Disease
The disease course of HF is often one of a gradual deteriora-
tion interrupted by exacerbations that towards end-stage
may have no precipitant. As the disease worsens, exacerba-
tions may become more frequent and less responsive to
treatment, resulting in “revolving door” admissions [30, 31].
In addition, the patient may become less tolerant to mainte-
nance treatment due to renal failure or hypotension [32, 33].
A retrospective review has demonstrated that patients with
HF have symptom burden, measured by functional status
for a longer period of time than cancer patients [4].
Box 1: Classification of HF [14]
● Heart failure with reduced ejection fraction (HFrEF)
● Defined as <40% LVEF. i.e. those with a significant reduc-
tion in LV systolic function
● Heart failure with mildly reduced ejection fraction
(HFmrEF)
● Patients with a LVEF between 41% and 49% ie those with
mildly reduced LV systolic function
● Heart failure with preserved ejection fraction (HFpEF)
Patients with symptoms and signs of HF, with evidence of
structural and/or functional cardiac abnormalities and/or
raised natriuretic peptides (NPs), but with an LVEF >50%
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244 Chapter 17
Communication with Patients
Recognition of advanced disease is only the first step in
improving patient care. The second step is to sensitively
and appropriately communicate this to patients and their
families. In the SUPPORT study however, even when clini-
cians were given detailed accurate information about the
patient’s likely prognosis, many failed to recognise and act
on that information, and only 15% discussed it with the
patients and/or their families [34, 35]. A systematic review
of literature by Barclay and colleagues concerning conver-
sations about end-of-life care between patients with HF
and health-care professionals suggests that clinicians wait
for cues from patients before raising end-of-life issues,
while patients commonly wait for clinicians to raise these
issues: as a result, the conversations rarely take place [36].
Interviews with 106 hospitalised patients with HF across
five tertiary centres in Canada confirmed that patients
valued honest communication by the doctor as among the
most important issues in relation to end-of-life care [37].
These views are reflected in a large study of 2331 cancer
patients, 1046 of whom were being treated palliatively, 87%
wanted all possible information, good or bad, including a
similar proportion in the palliative group [38]. In cancer
palliative care, significant strides have been made with
training in communication skills [39]. Truth telling tai-
lored to an individual’s requirements, while maintaining
realistic hope is a skill, and although it is difficult, it is usu-
ally the best way to work together to plan future appro-
priate management, and does not destroy hope, a fear
expressed by clinicians [40]. Cardiologists in a focus group
study confirmed that they rarely raised end-of-life issues
with patients, citing lack of confidence and training in dis-
cussing end-of-life issues as a significant barrier. It also
takes time, and may require restructuring of services, for
example out-patient cardiology clinics [41]. Disease
specific communication guidelines for cardiology have
very recently been produced and will enable patients, if
they wish, to discuss their poor prognosis and be involved
in decisions about their future care despite uncertain dis-
ease trajectories by [42] “hoping for the best, and preparing
for the worst” [43].
Societal and Professional Lack of
Understanding of Diagnosis and Needs
There is a risk that clinicians as well as patients feel the
symptoms in HF are inevitable [44] and untreatable mak-
ing a full assessment of palliative care needs less likely. It is
known that patients and carers have a poor understanding
of HF [45], the stage of their illness, its treatments and aims
of treatments, and the poor prognosis [46–50]. Patients
report being given little information, or what is given is
discussed in complex language that is difficult to under-
stand, and the term “HF” itself is perceived as a barrier by
some clinicians [46]. In addition, if palliative care is per-
ceived as something that is required only for the immi-
nently dying or for cancer patients this can be a significant
barrier. Clinicians find it difficult for many reasons to rec-
ognise that a patient is approaching the end of their life.
There are societal norms with the avoidance of death and
professional codes such as the duty of the doctor to pre-
serve life and may result in clinicians seeing death as a
failure. Increased therapeutic options may make it tempt-
ing for clinicians to strive for any prolongation of life, even
if this is futile, or merely prolongs the dying itself.
Fragmentation of Care
Many different disciplines are involved in patients with
advanced HF: cardiology, general medicine, care of the
elderly, emergency medicine, primary care, and palliative
care across community, hospital, and hospice settings. A
qualitative study by Hanratty and collegues in 2002 dem-
onstrated poor coordination of services between hospital
and community, lack of clarity regarding different speci-
ality clinicians’ roles, and the need for improved commu-
nication between all the professionals involved in patients
with HF and palliative care needs [41].
Many patients would prefer to remain at home, espe-
cially at the end-of-life, and see their GPs as the most
important person coordinating their care [41]. This is a
role that GPs are able and willing to undertake, but for HF
it has been suggested they would like education regarding
HF management and communication issues [51].
Cardiologists lack experience in palliative care [41, 52].
Palliative care specialists also require education, for
example, regarding medications and cardiac devices. This
is important as there is a need to continue some disease
modifying medications for patients with HF to control
symptoms [53]. Some palliative care specialists have also
expressed concern that scarce resources will be over-
whelmed [54] although established integrated services
have not reported this to be the case [55, 56]. Cancer palli-
ative care services tend to be better developed. As a large
number of professionals are involved in HF care it can
make it difficult to understand who is responsible for initi-
ating discussions about end-of-life care. Due to the bar-
riers to communication that have already been discussed,
it could mean that each professional leaves it to someone
else meaning it never happens.
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Palliative Care in Advanced Heart Failure 245
An important area with regard to fragmentation of care
is out-of-hours care. In cancer palliative care, there are
already concerns about poor coordination in out-of-hours
care [57–59]. In the UK out-of-hours GPs are a separate
service and in order to facilitate good out-of-hours pallia-
tive care, generally a specific communication or handover
is required. Advanced HF because of difficulty of recognis-
ing advanced disease may mean this handover is less likely
to happen creating another barrier to effective palliative
care for HF patients.
Needs Assessment Not Prognostication
as the Route to Improving Outcomes
The trajectory of HF can be quite variable but typically
includes a slow progressive overall decline accompanied by
a gradual worsening of breathlessness, fatigue, and
function with a decreased quality of life. With time,
patients will experience exacerbations of acute HF and the
frequency of cardiac decompensation increases with a
need for more hospitalisations and further decline in
quality of life. Families and patients grow accustomed to
this course of illness and often do not foresee dying, thus,
patients frequently die in an acute facility [60].
Further, sudden cardiac death occurs in approximately
half of all deaths in patients with HF [61]. The variable tra-
jectory coupled with high rates of sudden unpredictable
cardiac death makes prognostication very difficult [62].
Accurate prognostication can aid clinical decision mak-
ing and help patients and families with expectations and
advance care planning (ACP) [63]. As with other disease
states, patients and families tend to overestimate likelihood
of survival. Although informing patients of their likely
prognosis is important, such predictions are not exact at
the individual level, and the notion of uncertainty must
enter into the discussion [12].
Indeed, given the unpredictable trajectory of HF, prog-
nostic tools are of limited value for identifying patients
with a high risk of mortality who can benefit from pallia-
tive care [64]. The National Institute for Health and Care
Excellence (NICE) guidelines do not recommend prog-
nostic risk tools to determine if patients with HF need pal-
liative care referral [22]. These guidelines recommend if
the symptoms of a person with HF are worsening despite
optimal specialist treatment, discuss their palliative care
needs with the specialist HF multidisciplinary team and
consider a needs assessment for palliative care [22].
A recent systematic review identified six palliative care
needs assessment and measurement tools for patients with
HF [65]. The review concluded that despite limited evi-
dence, the Needs Assessment Tool: Progressive Disease—
Heart Failure (NAT: PD-HF) is the most appropriate
palliative care needs-assessment tool for use in HF popula-
tions [66–68]. It covers most of the patient needs and has
the best psychometric properties and evidence of
Case Study Part 1
BB is a 94-year-old female who lives alone in a two-story
house with three supportive adult children nearby. She has
New York Heart Association (NYHA) class 4 HF, hyperten-
sion, coronary artery disease with previous coronary artery
bypass graft, and implantable cardioverter-defibrillator
(ICD) with biventricular pacemaker inserted three years ago,
osteoporosis with recent T12 compression fracture, chronic
kidney disease with baseline glomerular filtration rate of 40
ml/min, and recurrent urinary tract infections.
Two years ago, she had significant decompensation of HF
and was hospitalised for two months. Both BB and her family
were told repeatedly during that admission to “prepare for
the worst”. The echocardiogram at discharge showed very
poor LV function. She was discharged home with signifi-
cantly reduced functional status but it improved gradually
over the next few months. She remained confined to her
house, however, only leaving it to go for primary care/hos-
pital appointments. In the last six months, her condition has
deteriorated again with three hospital admissions.
Case Study Part 2
In the past six months, she had three hospital admissions
and her primary care family physician reviews her at home.
Previously they had a good professional relationship but he
has not seen her recently. He also notes multiple call outs
to out of hours GP or paramedic services. The most recent
discharge from hospital was two weeks ago. Discharge letter
reads: “decompensated HF. IV Furosemide for 2 days and
discharged home on usual cardiac meds.” He notes she was
under a different team each admission who stabilised her
HF and then quickly discharged her from hospital. The letter
ends with “BB not keen on hospital and family happy to
support her at home.” The primary care physician reviews
that her creatinine is currently 300 and has been rising for
last year. She has a chronic low Na and is no longer able to
tolerate her angiotensin-converting-enzyme inhibitor (ACEI)
due to hypotension. She is on a large dose of diuretics. She
has had a comprehensive cardiology review and primary care
physician is happy that her medical and device therapy are
optimised. The primary care physician gained her agreement
for referral to the community palliative care team.
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246 Chapter 17
identification ability and appropriateness. Psychometric
testing of the tools in patients with HF and evaluating the
tools to identify those with palliative care needs require
more investigation [65]. NAT:PD-HF is completed by
health-care professionals, has been adapted for use in HF
populations and identifies palliative care needs which the
health-care professionals can meet themselves or refer to
palliative care or other services to receive assistance with a
particular concern [65, 66].
Palliative Care Delivery in HF
Five systematic reviews that show palliative care interven-
tions are effective for patients with HF [69–73]. Two of the
reviews included a variety of study designs as well as RCTs
and improved patient centred outcomes and support the
use of multidisciplinary palliative care teams for patients
with HF [69, 70]. The three reviews that only included
RCTS showed a reduction in depression [72,73], hospitali-
sations [73], and readmissions [71].
An integrated approach is recommended in European
and United States (US) guidelines [9–12]. This is provision
of palliative and supportive care along with disease modi-
fying interventions as part of comprehensive HF care.
Goodlin describes five stages of HF care from initial symp-
toms to end-of-life. She describes how at each stage there
are HF interventions, decision making/advance care
planning, and supportive care (communication, education,
psychosocial and spiritual issues, and symptom
management). Despite having five stages, the stages are not
consecutive: sudden death can occur at any point along the
disease trajectory and transplant and other acute interven-
tions can put a patient back to an earlier stage[53].
Interventional Aspects of Care
Implantable cardiac defibrillators (ICD) and cardiac resyn-
chronisation therapy defibrillators (CRTD) are currently
the gold standard in treatment of HF [74]. Both devices
reduce mortality in HF by preventing sudden cardiac
death due to ventricular arrhythmia [14]. In end-stage HF,
consideration of deactivation of ICD or CRTD devices is of
paramount importance. HF patients approaching death
may have unstable ventricular rhythms causing recurrent
shocks with pain and distress. It is therefore recommended
that the defibrillator function of these devices is disabled
[10]. The exact timing of this will vary depending on the
individual patient, their arrhythmia burden, and previous
device therapies but generally when considering do not
attempt cardiopulmonary resuscitation decisions as part of
wider goals of care decisions [42, 75]. Indeed, it is recom-
mended that discussions about future deactivating ICDs
take place prior to their insertion [75]. The concept of
device deactivation must be conveyed sensitively to the
patient and their carers. Patients may have misconceptions
about how their device works and may even anticipate
instantaneous death on deactivation of the defibrillator
[76]. Importantly, disabling the defibrillator function of an
ICD or CRTD does not affect the pacing function of the
device. A cardiac resynchronisation therapy (CRT) pace-
maker, as well as improving survival, improves symptoms
and quality of life while reducing hospital admission and
so should usually be continued [14]. If reprogramming of
an ICD is not possible and patient is close to death and
receives shocks, a magnet over the ICD will temporarily
suspend antitachycardia therapies while not disabling anti-
bradycardia pacing [77].
Cardiac transplantation is an established therapy associ-
ated with good long-term survival and marked improvement
Case Study Part 3
BB and her family explain to the community palliative care
team that they are keen for her to spend as much time at
home rather than in hospital. The team discussed resuscita-
tion including deactivating her ICD. One of her daughters
finds these conversations difficult. As she explained: “Doctors
don’t know anything. They thought she was dying two years
ago and she got better.”
Over a couple of conversations with the palliative care
team, BB, her family and the team decided it is appropriate for
BB not to be resuscitated and for her ICD to be switched off
but keep the biventricular function. This is organised via local
protocols. BB attended day hospice once a week for an eight-
week block. She found the peer support and her discussions
with the spiritual care coordinator particularly beneficial. The
physiotherapist reviewed her breathing exercises, and BB was
confident to do them at home along with using her hand-held
fan. Breathlessness was further palliated by low-dose opioid,
which also controlled her back pain from the T12 compres-
sion fracture secondary to her osteoporosis. BB and her family
appreciated being able to call the out-of-hours hospice/com-
munity palliative care telephone line when she was breath-
less at night and had not felt the need to phone emergency
services. Appropriate advance care planning documents
including treatment escalation orders, detailing the plan to
manage BB symptoms at home were completed. Admission to
hospital would be avoided unless comfort measures failed. BB
indicated that her preference would be to die at home.
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Palliative Care in Advanced Heart Failure 247
in functional capacity in appropriate patients. It is only avail-
able to limited patients with about 5,000 patients worldwide
receive heart transplants each year. Best utilisation of avail-
able donor organs dictates that patients selected for trans-
plant should be both ill enough to require transplantation but
well enough to have good long-term outcome after trans-
plantation. Most transplant centres exclude patients >70–75
years of age and those with advanced comorbidities [9].
A left ventricular assist device is a battery-operated
blood pump that is implanted into either ventricle to
decrease the workload of the struggling ventricle. They
provide mechanical circulatory support and can serve as a
bridge to transplant or used on a long-term basis but are
costly and available to very few at present. It is now recom-
mended, apart from in emergency situations, that a pallia-
tive medicine consultation is conducted prior to insertion
and palliative care specialists are part of the mechanical
circulatory support team [9, 12].
Symptom Management
Patients with HF have a symptom burden similar to those
with malignant disease. To ensure good palliation of symp-
toms and best patient care, a systematic symptom
assessment should be performed. Special attention should
be given to patient preferences and goals of care.
Optimal HF management combines both symptom-
and disease-modifying therapies and as patient goals of
care change, the benefits of some medications will need to
be revisited. Many patients with HF have refractory symp-
toms such as pain, breathlessness, fatigue, cough, nausea,
limited mobility, falls, depression, anxiety, insomnia, con-
stipation, and loss of appetite [5, 33, 78]. In the community,
these persons experience a loss of independence with
increased dependence on others [5]. The management of
symptoms should consider patient goals and preferences,
subjective experience, and disease-specific factors such as
available and appropriate therapies, performance status,
and prognosis.
HF patients require the same approach to symptom
assessment and management as all palliative care patients,
and the concepts of “total pain” or “total breathlessness”
[79] remind us of the need to holistically assess all
domains including psychosocial, spiritual, carer concerns
and information and communication needs as well as
physical [76].
Good symptom control requires both recognising and
treating any co-morbidities while optimising HF medical
and device therapy management as appropriate depending
on the stage of disease and the wishes of the patient [76].
The HF population is not well represented in studies
investigating the palliation of pain and other symptoms. It
is, however, reasonable to extrapolate from evidence and
guidance from other palliative care populations, unless
there is evidence of contraindication. It is also important to
consider multi-morbidity such as renal failure which is
common in patients with HF patients [76].
Breathlessness
Breathlessness is the most common reason for patients with
HF to seek medical attention and hospital admission [80].
Compared with primary or metastatic lung cancer, persons
with HF and other non-cancer causes of breathlessness
have significantly higher levels of breathlessness in the last
three months of life, which remains relatively constant until
death [81]. Non-pharmacological management is impor-
tant. This includes providing a fan to the facial area,
breathing training and exercise programmes, and anxiety
management [82].
Exercise has been clearly shown to improve quality of
life in HF [83, 84]. However, studies of patients with the
most severe symptoms are lacking [83]. Evidence for other
non-pharmacological interventions for breathlessness in
HF is mostly extrapolated from trials in patients with
chronic obstructive pulmonary disease (COPD) [85].
Psychological interventions, specifically in HF patients,
have shown some benefit [85–87].
An adequately powered RCT of morphine compared
with placebo demonstrated an improvement in refractory
breathlessness in those taking morphine in a palliative care
population [88]. There are fewer studies specifically in HF
populations. Therefore, extrapolating from evidence in
other populations, low dose opioids are both efficacious
and safe [89]. Relatively low doses are often sufficient [9].
Benzodiazepines are commonly used to palliate
refractory breathlessness, but a Cochrane review demon-
strated insufficient evidence and concluded that until
more adequately powered studies were conducted, benzo-
diazepines should be considered second- or third-line
treatment only [90]. They should be used cautiously
because of risk of side effects in advanced HF especially
considering comorbidities such as renal failure.
Despite being commonly prescribed, there is no evi-
dence for supplementary oxygen in the palliation of
refractory breathlessness in the absence of significant
hypoxaemia [91, 92]. However, very few patients with HF
were included in these studies. European guidance specifi-
cally for heart failure patients state there is little benefit of
supplementary oxygen in pts with HF alone [10].
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