Clinical REVIEW

Emotional distress in patients

with advanced heart failure
Christina Ramsenthaler

Chronic heart failure (CHF) is a leading cause of death, with a rising prevalence. The disease has a high
symptom burden and a negative impact on patients quality of life. However, as a result of difficulties
in prognostication in relation to CHF, palliative care services do not always become involved in the care
of patients with CHF. Emotional distress is especially common in the advanced stages of disease, including
CHF. The term emotional distress encompasses psychiatric symptoms such as depression and anxiety,
as well as the wider spectrum of entities such as low mood. Emotional distress is a less stigmatising term
than the more psychiatric-based terms. This article provides an overview of the prevalence, pathophysiology
and symptoms of emotional distress in patients in the advanced stages of CHF. It summarises evidence on
the psychological needs of patients and provides recommendations regarding the assessment of emotional
distress at the end of life. It is hoped that the article will increase understanding of the psychological
symptom burden in patients with advanced heart failure. Conflicts of interest: none

Key words
Chronic heart failure
Emotional distress
Palliative care
Patients experiences

hronic heart failure (CHF) is a

major health problem worldwide,
with a rising prevalence (Roger
et al, 2004). Ischaemic heart disease was
the leading cause of death in England and
Wales in 2009, accounting for 14.7% of
all deaths (Office for National Statistics
(ONS), 2010).The long-term survival rate
of patients with heart failure is worse than
for patients with breast or bowel cancer
(ONS, 2010). As the mean age of onset
of heart failure is 76 years, patients also
present with co-morbidities and are likely
to experience problems (both physical
Christina Ramsenthaler is Research Assistant,
Department of Palliative Care, Policy and
Rehabilitation, School of Medicine, Kings
College London, Cicely Saunders Institute,
Denmark Hill, London. Email: christina.
ramsenthaler@kcl.ac.uk
End of Life Journal, 2011, Vol 1, No 2

and psychosocial) associated with frailty

and ageing (Dickstein et al, 2008). Heartfailure patients have considerable unmet
needs at the end of life (e.g. physical,
psychological, social, spiritual, information
and communication) and a high symptom
burden (OLeary, 2009).The quality of life
of patients with heart failure is as low as,
or worse than, the quality of life of patients
with cancer (Archana and Gray, 2002;
Heart Failure Society of America, 2006;
While and Kiek, 2009).
It is acknowledged that patients with
advanced heart failure require involvement
of palliative and supportive care services
(Scottish Intercollegiate Guidelines
Network (SIGN), 2007; National Institute
for Health and Clinical Excellence (NICE),
2010a). However, specialist palliative care
services and palliative care in general are
underutilised by patients with heart failure
at the end of life (Formiga et al, 2008).
The reasons for the lack of palliative care
involvement have been summarised by
OLeary (2009) (Table 1). Patients and
their families do not tend to discuss endof-life preferences with clinicians (Selman
et al, 2007c). Also, cardiology staff may be
reticent to bring up such conversations
(Selman et al, 2007c), as patients with CHF
do not always consider themselves to have

a life-limiting disease (Boyd et al, 2004).

Recommendations for referral criteria to
palliative care services identified in the
literature are listed in Table 2.These require
palliative care and cardiology services to
work more closely together and develop
supportive relations so that patients
with CHF and their carers benefit from
shared expertise.Training requirements
of both palliative care services (in terms
of how best to manage end-stage cardiac
symptoms) and cardiology services (in
terms of end-of-life planning) need to be
identified (Selman et al, 2007c). Models
of how palliative care could be integrated
into CHF management have been
proposed (Goodlin et al, 2004; Horne and
Payne, 2004; Coventry et al, 2005; SIGN,
2007; Stuart, 2007; Jaarsma et al, 2009;
Widera and Pantilat, 2009; NICE, 2010a).
It is recognised that CHF patients,
particularly in the last year of life,
experience a high burden of emotional
symptoms.That is due, in part, to the high
prevalence of depression and anxiety
in heart failure (both depression and
anxiety are risk factors for mortality in
heart failure) and the adverse situation of
heart-failure patients in the later stages of
the disease process (Grippo and Johnson,
2002; Selman et al, 2007a). Emotional
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Clinical REVIEW
distress has a high impact on death
distress (i.e. death-related depression and
anxiety) in patients with advanced disease
(Chibnall et al, 2002). As symptoms of
depression and anxiety increase in later
stages of heart failure (Skotzko, 2009),
effective management of depression and
anxiety may buffer the negative effects
of emotional distress at the end of life
(Chibnall et al, 2002; LeMay and Wilson,
2008).The term emotional distress
encompasses psychiatric symptoms such
as depression and anxiety. However, it also
covers a wider spectrum of entities such
as low mood and sub-threshold mental
health symptoms. Emotional distress is
a less stigmatising term than psychiatricbased terms (Murillo and Holland, 2004;
Holland et al, 2010).

practice. Recommendations have been

made throughout the text on the basis of
a literature search and patient experiences
from qualitative studies. Discussion
of pharmacological management of
emotional distress (including depression) is
outside the remit of this article. Interested
readers should refer to clinical guidelines
(e.g. SIGN, 2007; Dickstein et al, 2008;
NICE, 2009, 2010b; South East London
Cancer Network Palliative Care and End
of Life Care Coordinating Group, 2009;
Rayner et al, 2010). Assessment of the
quality of evidence was carried out using
the SIGN grading classification (Table 3).
Practice recommendations have been
graded according to SIGN grades of
recommendation (Table 4).

This article describes the emotional

distress at the end of life in patients with
heart failure. It will examine the prevalence
of emotional distress in CHF, its aetiology
and pathophysiology, the emotional effects
of CHF on patients and implications for

Relevant qualitative studies, systematic

reviews and clinical guidelines regarding
prevalence, pathophysiology, patient
experiences and palliative care issues
in relation to emotional distress in
patients with heart failure were identified

Literature search strategy

Table 1
Reasons why specialist palliative care services and palliative care are underutilised
by patients with heart failure
= Palliative care is perceived as synonymous with cancer
= The unpredictability of the heart failure disease trajectory, characterised by
frequent exacerbations of disease with hospital admission
= Difficulties in anticipating the terminal phase
= High prevalence of sudden death
= Therapeutic imperative in cardiology cycles
= Lack of evidence for palliative care in heart failure
Source: OLeary (2009)

Table 2
Referral criteria to specialist palliative care services for patients with heart failure
= The patient has been reviewed by the heart failure team, understands his/her
diagnosis, and has agreed to the referral (Selman et al, 2007b)
= Deteriorating symptoms despite optimal treatment (Harding et al, 2008, 2009)
= Burden of informal caregivers (Harding et al, 2008, 2009)
= Prognostication criterion of having had two or more previous admissions
for heart failure in the last 6 months (Harding et al, 2008, 2009)

End of Life Journal, 2011, Vol 1, No 2

by searching the following electronic

databases: MEDLINE(R) In-Process
& Other Non-Indexed Citations
and MEDLINE(R) via Ovid (1950 to
December 2010); Embase via Ovid
(1980 to December 2010); CINAHL
via Ebsco (1980 to December 2010);
PsycINFO via Ovid (1806 to December
2010); Cochrane Library (Issue 4, 2010);
and Applied Social Sciences Index and
Abstracts (ASSIA) (1987 to December
2010).The following subject headings
and key words were used: chronic heart
failure or congestive heart failure or CHF
and anxiety or anxiety disorder or panic
or panic disorder. Subject headings and
searches were adjusted to the different
databases. Inclusion criteria were: adult
patients with moderate, severe or very
severe CHF (patients with CHF New
York Heart Association (NYHA) classes III
and/or IV or patients with cardiovascular
disease or heart failure within their
terminal or advanced or life-threatening
phase); mixed samples were included as
long as it was stated explicitly that patients
with advanced heart failure were part
of the sample; any care setting. Exclusion
criteria were: <18 years; studies of patients
with an implanted cardioverter-defibrillator
device or other mechanical assist devices
(as these patients experience unique
problems at the end of life (Sears et al,
2008, 2009); for a guideline on the end-oflife treatment of these patients see Beattie,
2007); studies in which participants are
described as post-myocardial infarction
without specifying the presence of NYHA
classes III or IV (i.e. patients in the earlier
stages of the disease, with coronary artery
disease, chronic angina, hypertension or
any other cardiac disease not fulfilling the
stage criterion); patients with congestive
heart failure awaiting, or following, heart
transplantation, not in the palliative
phase of their illness. Reference lists of
all included studies, systematic reviews
and relevant textbooks were scanned for
further articles. Websites of SIGN, NICE
(UK), National Guideline Clearing House
(US), National Library for Health (UK)
and Clinical Practice Guidelines (Australia)
were searched for clinical guidelines.

Chronic heart failure (CHF)

Heart failure is considered a clinical
syndrome rather than a disease. A variety
of working definitions of CHF have been
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Clinical REVIEW
employed in different guidelines. According
to the Heart Failure Society of America
(2006):
Heart failure is a syndrome caused by cardiac
dysfunction, generally resulting from myocardial
muscle dysfunction or loss and characterised by
left ventricular dilation or hypertrophy.Whether
the dysfunction is primarily systolic or diastolic
or mixed, it leads to neurohormonal and
circulatory abnormalities, usually resulting in
characteristic symptoms such as fluid retention,
shortness of breath, and fatigue, especially
on exertion. In the absence of appropriate
therapeutic intervention, heart failure is usually
progressive at the levels of cardiac function
and clinical symptoms.The severity of clinical
symptoms may vary substantially during the
course of the disease process and may not
correlate with changes in underlying cardiac
function. Although heart failure is progressive
and often fatal, patients can be stabilised,
and myocardial dysfunction and remodelling
may improve, either spontaneously or as a
consequence of therapy. In physiologic terms,
heart failure is a syndrome characterised
by elevated cardiac filling pressure and/or
inadequate peripheral oxygen delivery, at rest
or during stress, caused by cardiac dysfunction.

Heart failure is often classified in terms

of preserved left ventricular ejection
fraction (LVEF) <40% (systolic heart
failure) or heart failure with preserved
systolic function (formerly known as
diastolic heart failure) (ejection fraction is
the fraction of blood pumped out of the
right and left ventricles with each heart
beat).The New York Heart Association
(NYHA) has provided classifications for
disease severity in heart failure (New York
Heart Association, 1964) (Table 5).
The disease trajectory in CHF follows
a pattern of gradual decline punctuated
by phases of symptom exacerbations and
hospital admissions (Lunney et al, 2003). In
heart-failure patients, 40% of deaths can
be sudden (Jaarsma et al, 2009). As every
exacerbation could potentially lead to
death, the prognostication of the terminal
phase in heart failure is difficult (Jaarsma,
2005; Jaarsma et al, 2009). Coventry et
al (2005) conducted a systematic review
of the literature to identify predictor
variables to help estimate prognosis of
less than 6 months in non-cancer patients
aged 65 years and older.The main generic
End of Life Journal, 2011, Vol 1, No 2

predictors were increased dependency in

relation to activities of living, co-morbidities,
poor nutritional status, weight loss and
abnormal vital signs and laboratory values.
In CHF, specific predictors included older
age, LVEF <40%, arrhythmia, systolic

hypotension and co-morbidities, e.g. cancer,

cerebrovascular disease, liver cirrhosis,
chronic obstructive pulmonary disease
and dementia. Patients with CHF and their
carers require sensitive communication
and information about end-of-life issues

Table 3
Scottish Intercollegiate Guidelines Network level of evidence (www.sign.ac.uk)
1++

High-quality meta-analyses, systematic reviews of RCTs, or RCTs with a very

low risk of bias

1+

Well-conducted meta-analyses, systematic reviews, or RCTs with a low risk

of bias

1-

Meta-analyses, systematic reviews, or RCTs with a high risk of bias

2++

High-quality systematic reviews of case control or cohort studies

High-quality case control or cohort studies with a very low risk of
confounding or bias and a high probability that the relationship is causal

2+

Well-conducted case control or cohort studies with a low risk of

confounding or bias and a moderate probability that the relationship
is causal

2-

Case control or cohort studies with a high risk of confounding or bias

and a significant risk that the relationship is not causal

Non-analytic studies, e.g. case reports, case series

Expert opinion

RCTs=randomised controlled trials

Table 4
Scottish Intercollegiate Guidelines Network grades of recommendation (www.sign.ac.uk)

At least one meta-analysis, systematic review, or RCT rated as 1++, and

directly applicable to the target population; or
A body of evidence consisting principally of studies rated as 1+, directly
applicable to the target population and demonstrating overall consistency
of results

A body of evidence including studies rated as 2++, directly applicable to

the target population, and demonstrating overall consistency of results; or
Extrapolated evidence from studies rated as 1++ or 1+

A body of evidence including studies rated as 2+, directly applicable to the

target population and demonstrating overall consistency of results; or
Extrapolated evidence from studies rated as 2++

Evidence level 3 or 4; or
Extrapolated evidence from studies rated as 2+

Good practice points

Recommended best practice based on the clinical experience

of the guideline development group

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Clinical REVIEW
Table 5
New York Heart Association (NYHA) classification of heart failure
= Patients NYHA class I: high risk for developing heart failure, evidence for left
ventricular dysfunction but no symptoms on exercise or at rest
= Patients NYHA class II mild: symptoms only on moderate exercise
= Patients NYHA class III moderate: symptoms on mild exercise (such as during
the activities of daily living)
= Patients NYHA class IV severe: marked symptoms at rest despite maximal
medical therapy
Source: New York Heart Association (1964)
(Wotton et al, 2005; Barnes et al, 2006;
Selman et al, 2007b; Schenker et al,
2009). NICE (2010a) has recommended
that issues of sudden death, living with
uncertainty and end-of-life needs should
be explored with all patients at the earliest
opportunity and throughout the entire
disease trajectory. In addition, patients
and their carers should also have access
to professionals with palliative care skills
within the heart failure team.

Prevalence of emotional distress in CHF

Prevalence rates of depression in heart
failure vary from 13% to 77.5% (Norra et
al, 2008;Thomas et al, 2008).The variation
in prevalence rates is due to individual
studies using different assessment tools
to measure depression (see below) and
the fact that study participants are in
different stages of the disease and are
being cared for in a variety of settings.
For example,Thomas et al (2008)
showed that prevalence of depression
among outpatients was lower than for
inpatients, a finding resulting from the
different assessment methods used.
When diagnostic interviews are applied
(measurement of major depression
disorder as opposed to depressive
symptoms), prevalence of depression is
lower (Yohannes et al, 2010). Women
have been found to be 1.7 times more
likely than men to experience significant
depression during their lifetime (Kessler et
al, 2003). A systematic review by Konstam
et al (2005) found that anxiety was
experienced by 63% of patients with heart
failure. Major anxiety was a problem in
about 40% of patients.Therefore, anxiety
levels may be as high as, or higher than,
those for cancer patients. In the Regional
End of Life Journal, 2011, Vol 1, No 2

Study of Care for the Dying (AddingtonHall and McCarthy, 1995; McCarthy et
al, 1997), low mood and anxiety were
perceived as very distressing by 50% of
patients, indicating an associated poor
quality of life (Lewis and Stephens, 2005)
(Recommendation 1).

Aetiology and pathophysiology of emotional

distress in CHF
Psychosocial factors (especially depression
and anxiety) as aetiological and prognostic
factors in heart disease have been widely
studied (Roose, 2001; Sheps and Sheffield,
2001; MacMahon and Lip, 2002; Moser,
2002; Katon et al, 2007; Goldston and
Baillie, 2008; Jiang, 2008; Kent and Shapiro,
2009). Many epidemiological, cohort
studies have examined depression and
anxiety in populations with different stages/
types of heart diseases. In prospective
cohort studies, four aetiological factors
have been studied: type A/hostility,
depression and anxiety, psychosocial
work characteristics and social support
(Doerfler and Paraskos, 2004; McCann
et al, 2005). It has been suggested that
there are aetiological and prognostic links
between depression, anxiety and heart
disease (Goldston and Baillie, 2008). Both
depression and anxiety are contributing
factors in the development of heart
disease and can worsen the condition
(Hemingway and Marmot, 1999). An
overview of potential causal mechanisms is
provided in Figure 1.

Effects of emotional distress on CHF patients

Qualitative studies describing the
emotional distress and symptoms of
anxiety and depression in heart disease are
rare (Artinian, 2003). More often, studies

explore the general experience of patients

living with heart failure. Samples usually
comprise patients in the earlier stages of
disease. Only a few studies incorporate, or
deliberately look at, patients at the end of
life (Dekker et al, 2009).
Emotional distress is frequently
associated with the uncertain prognosis in
CHF (Zambroski, 2003).This uncertainty
has been described as being imprisoned
by the disease (Ekman et al, 2000). In
Brnnstrm et als (2006) study, patients
with advanced heart failure used the
term roller coaster life to describe the
frequent exacerbations and ups and
downs in the disease process. Welstand
et al (2009) undertook a systematic
review of qualitative studies (ranging
from 1985 to 2008) relating to patients
experience of living with heart failure.
They identified the following conceptual
categories: diagnosis and manifestations of
heart failure, perceptions of day-to-day life,
coping behaviours, role of others and the
concept of self, the latter being regarded
as an overarching theme influencing all the
other categories.The process of becoming
a patient with heart failure, from diagnosis
and treatment to progression of the
disease, appeared to lead patients to adopt
a new identity or a new self. Physical
symptoms were a major source of burden.
However, participants identified that it
was not just the severity of symptoms
that impacted on quality of life, but the
non-linearity and suddenness of onset of
symptoms (Welstand et al, 2009).
Murray et al (2002) aimed to compare
the illness trajectories, needs, and service
use of patients with cancer and those with
advanced, non-malignant disease.They
conducted 3-monthly qualitative interviews
for up to 1 year with 20 patients with

Recommendation 1

Level of evidence
and grade of
recommendation

1. Be aware of the high

prevalence of symptoms
indicating emotional
distress in the advanced
stages of heart failure
(especially depression
and anxiety)

2++
B

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Clinical REVIEW
advanced heart failure and 20 patients
with inoperable lung cancer and their
informal and professional carers.The illness
trajectory of patients with heart failure
was less predictable than that of patients
with lung cancer. Heart-failure patients
were provided with less information about
their condition and prognosis. Frustration,

progressive losses, social isolation and

the stress of balancing and monitoring a
complex medication regimen dominated
the lives of patients with heart failure.
Heart-failure patients received less health,
social, financial and palliative care services
than patients with lung cancer and care
was often poorly coordinated.

Figure 1. Aetiology and pathophysiology

of emotional distress in chronic heart disease
Although causal mechanisms still need to be confirmed,
a number of biological and indirect pathways of
behavioural, lifestyle and social factors have been
identified in depression and anxiety in chronic heart
failure (CHF) (Guck et al, 2003; Pelle et al, 2008;
York et al, 2009).The most important biological
mechanism includes a dysregulation of the hypothalamicpituitary-adrenocortical (HPA) axis, resulting in an
overstimulation of the sympathetic nervous system
and an increase in catecholamines and serum cortisol.
This leads to an increase in blood pressure and
heart rate and, as a consequence, an increased risk of
atherosclerotic plaque rupture and the onset of a cardiac event (Thomas et al,
2008). Other aetiological mechanisms leading to heart disease are disturbances
in blood-clotting mechanisms (depression is linked to increased platelet
activation and hypercoagulability), sub-acute inflammatory immune responses
and alterations in vascular endothelial functions of the coronary arteries (Evans
et al, 2005). Consequently, depression as mental stress leads to a physical stress
response via the central nervous system, which ultimately leads to heart disease
(Thomas et al, 2008).Therefore, depression may be an aetiological factor leading
to onset of the disease.
Depression also increases mortality and morbidity after a myocardial
infarction, by means of disturbance in cardiac autonomic tone. Behavioural
mechanisms increase the risk of depressed patients developing heart disease.
Risk factors, which are augmented in depressed patients, are reduced physical
activity, decreased compliance with dietary recommendations and higher
smoking rates. Also, once patients suffer from CHF, depression affects adherence
to treatments. Social support plays a crucial role (Lainscak and Keber, 2003;
Johansson et al, 2006). Perceived social isolation and support and living alone
have been found to increase mortality and morbidity in heart-failure patients
(Goldston and Baillie, 2008). Although many epidemiological studies suggest a
strong link between depression and heart disease, there is not enough evidence
to support a true causal relationship. For example, a temporal association
for depressed patients without heart disease developing CHF has not been
demonstrated (Sheps and Sheffield, 2001).
The link between anxiety and heart disease has not been as thoroughly
researched as depression and heart disease. It has been suggested that anxiety
is a predictor of functional status and is associated with a higher incidence of
cardiac events or cardiac death (Konstam et al, 2005). However, results are
inconsistent and inconclusive.The diagnosis of heart disease often signifies a
sudden confrontation with mortality (McCann et al, 2005).Therefore, anxiety and
concern are within a normal spectrum of reactions to cardiac disease. Moreover,
in later stages, patients are confronted with the uncertainty of their prognosis
and serious disruptions in their daily lives due to high symptom burden.

End of Life Journal, 2011, Vol 1, No 2

Loss of role functioning and hobbies

or work appears to have the greatest
impact on CHF patients life and wellbeing
(Pattenden et al, 2007). However, as
most qualitative studies recruit samples
of patients from NYHA stages I to III, the
views and experiences of more severely
affected patients might be different.The
special needs of older patients were
examined in a systematic review of
qualitative studies relating to how older
people live with CHF (Yu et al, 2008). It
was found that patients were burdened by
their uncertain prognosis and distressing
symptoms, which caused them to feel
powerless and hopeless. Negative
emotions arose from low functional status.
The ability to care for themselves was a
major source of distress for older patients.
Day-to-day life was severely altered after
diagnosis of heart failure and the condition
was perceived to disrupt normal life.
Horne and Payne (2004) undertook
interviews with a sample of 20 patients
(NYHA class IIIV) about their
experiences of severe heart failure.The
patients reported that they felt extremely
fatigued, were unable to carry out even
small tasks, had difficulties with walking, felt
breathless and needed to rely on others
(family, friends and neighbours) to perform
even the most basic daily activities. Patients
used words such as terrible, miserable,
shattered or rotten to describe the effect
that heart failure had on their lives.They
reported feelings of frustration, anxiety,
sleeplessness and loss of self-esteem.
They were able to cope with their disease
by relying on others. However, they
dreaded being a burden on their loved
ones. Pattenden et al (2007) explored
how patients with heart failure and their
family carers coped with their daily lives.
They interviewed 36 patients and 20
family caregivers. Eight of the patients were
in NYHA class IV. Participants reported
emotional distress. Living with heart failure
was perceived as frightening, restrictive and
distressing by both patients and caregivers.
Feelings of guilt and loss were associated
with having to give up social roles and
being unable to carry out household
chores. Men experienced depression
more than women. However, women
were more likely than men to report fear
and anxiety linked to acute episodes and
distressing symptoms. Sleep and nocturnal
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breathlessness were perceived as especially
upsetting. Anxiety and concerns were
expressed about the future.
Boyd et al (2004) aimed to understand
how patients with heart failure and their
carers viewed health and social care in
the last year of life.They interviewed 20
patients with NYHA class IV, their informal
carers, GPs and other professionals in a
series of qualitative interviews throughout
a 1-year period.The symptom burden,
especially breathlessness and fatigue, was
very high.The management of symptoms,
treatments and coping strategies played
a major role in patients and carers lives.
Themes such as information needs
about prognosis and end-of-life care and
increasing social isolation and carer stress
were also identified. Physical limitations
resulted in low self-esteem and social
isolation, leading to low mood and
anxiety. Patients reported that emotional
problems were just as prominent as
physical symptoms but less well recognised
by professionals. Moreover, the need for
assistance with daily tasks, such as bathing,
caused loss of dignity.The healthcare
system was perceived as being too
complex and people felt let down by it.
Also, although patients felt vulnerable
and had experienced deteriorations in
their condition, they did not perceive
themselves as dying.
Dekker et al (2009) conducted
qualitative interviews with 10 outpatients
with heart failure, seven of whom
had NYHA classes III or IV, to try and
understand their experience of living with
depressive symptoms. Depression was
recognised by patients through emotional
symptoms such as sadness, irritability and
anxiety. Patients also described somatic
symptoms such as lack of energy and
difficulty concentrating. Negative thinking
and cognitive distortions were also
experienced. Stressful situations (financial
issues, family problems, losses) worsened
their symptoms of depression. However,
patients in this study reported that
their depressive symptoms had existed
before their diagnosis of heart failure.
Bogner et al (2008) explored the views
of patients regarding possible reasons
for emotional distress in heart disease.
They asked 33 heart-failure patients with
symptoms of hopelessness, depression and
End of Life Journal, 2011, Vol 1, No 2

worthlessness about possible pathways

leading to depression.The patients thought
the relationship was two-sided: heart
disease could cause depression and viceversa. Heart disease and its implications
for daily life led to thoughts of doubt and
fear and feelings of loss of control and
depression.The inverse pathway started
with feelings of distress and negative
thoughts leading to the physical symptoms
of heart disease.The central role of
negative thoughts was apparent in both of
the pathways (Bogner et al, 2008).
Psychological and social decline appear
to mirror physical decline in patients with
advanced heart failure (Murray et al, 2007).
However, spiritual concerns arise more
often throughout the disease trajectory
(Murray et al, 2002, 2004, 2007).The term
spirituality is difficult to define because
it is very individual and means different
things to different people. In brief, it refers
to the search for existential meaning (the
meaning of existence) and the purpose of
and value in life. It is distinct from religion
but some patients will refer to a power
other than self, expressed as God or
nature (NICE, 2004).The search for lifes
meaning becomes important in advanced
stages of illness (Murray et al, 2004).
Murray et al (2004) explored the spiritual
needs of 20 people with inoperable lung
cancer and 20 people with end-stage
heart failure and their informal carers.
They conducted 3-monthly qualitative
interviews for up to one year. Common
themes in both groups were peace
of mind and spiritual wellbeing. It was
found that the more predictable disease
trajectory of cancer allowed patients with
lung cancer to plan for death and attain
a sense of spiritual wellbeing. However,
patients with heart failure experienced
episodes of acute deterioration and the
possibility of a sudden death.This appeared
to reduce their sense of spiritual wellbeing
and caused them to struggle to find lifes
meaning.They felt isolated and hopeless
and lacked confidence in themselves.
Regardless of religious beliefs, participants
expressed the need for love and wanting
to understand the meaning, purpose and
value of their lives. However, patients
reported that health professionals lacked
the necessary time and skills to carry
out spiritual care, which was defined as
helping people whose sense of meaning,

purpose and worth is challenged by

illness. Many patients with heart failure
felt abandoned by community health and
social care services, which undermined
their sense of identity and self-worth.
During acute hospital admissions, spiritual
and emotional needs were unrecognised
or ignored by staff. Participants greatly
valued professionals who were willing to
talk with them and ask them about their
spiritual and emotional needs.

Implications for clinical practice

Health professionals, including nurses, need
to be aware of the high prevalence of
emotional distress in advanced stages of
heart failure (Norra et al, 2008;Thomas
et al, 2008).They have the potential
to support patients. Loss of functional
dependence leads to a diminished sense
of dignity, which can result in depression,
hopelessness and anxiety (Chochinov et
al, 2002). By adopting coping behaviours
such as pacing techniques, and trying to
make sense of their situation, patients may
find it possible to reappraise their life and
learn to adapt to lower functional status.
However, despite adhering to lifestyle
changes, symptom burden can still increase,
leading to further loss of independence
and dignity (van Elderen et al, 1999;
Buetow et al, 2001;Vollman et al, 2007).
It has been reported that some
patients have had bad experiences
with health professionals as a result
of insensitive communication and lack
of time for psychological supportive
strategies (Zambroski, 2003; Murray et
al, 2004; Welstand et al, 2009). Many
nurses, for example, feel that they do not
have the necessary expertise to discuss
psychological concerns with patients
(Mohen et al, 2005). Feelings of inadequacy
when faced with emotional distress
cause nurses to adopt blocking tactics to
emotional concerns and concentrate only
on patients physical needs (McCaughan
and Parahoo, 2000; Mohen et al, 2005;
Dalgaard and Delmar, 2008). When
patients perceive that they are being
ignored, their emotional distress increases
(Murray et al, 2004; Dalgaard and Delmar,
2008). Patients need to feel that health
professionals are interested in them as this
enables them to come to terms with their
life and retain feelings of self-worth (Grant
et al, 2004).
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Clinical REVIEW
Psychological symptoms often
go unrecognised (NICE, 2004). NICE
(2004) has developed a four-level
model of psychological assessment and
intervention. For example, all health and
social professionals, including nurses,
are expected to be able to work at
level one.They therefore need to be
able to recognise patients psychological
concerns, provide information and general
psychological support, treat patients with
kindness, dignity and respect and establish
and maintain supportive relationships.

Recommendations 2 and 3
2. The increasing
burden in later stages of
heart disease and the
widespread implications
on daily life, such as
dependence on others,
lead to anxiety, fear,
depression and spiritual
distress. It is important
to ask about problems
in daily life, sleep
disturbance, burden and
feelings of hopelessness
and meaninglessness.
Information and
communication needs
of patients should
be assessed and
acknowledged. Ask
patients what they
know about the disease
and discuss prognosis
and uncertainty in a
sensitive way and where
appropriate. Address
what the patient can
expect and issues related
to end-of-life preferences
and how these might
change over time
3. It is also important
to ask about possible
spiritual distress as it
has been found to be
predictive of worsening
symptoms relating to
emotional distress at
the end of life

Level of evidence
and grade of
recommendation

3
D

Appropriate interventions at level 1

may prevent more severe psychological
problems developing and reduce the need
for patients to be referred to specialist
services (NICE, 2004). Patients need to
be asked about the problems they are
experiencing in their daily life, e.g. sleep
disturbances, feelings of hopelessness,
meaninglessness and being a burden
(Ryan, 2005; South East London Cancer
Network Palliative Care and End of Life
Care Coordinating Group, 2009). Patients
need to be helped to learn to live with
their condition and an uncertain prognosis
(Murray et al, 2002, 2004; Lewis and
Stephens, 2005b;Yu et al, 2008).

Table 6

et al, 2004). It is essential that health

professionals, including nurses, receive
appropriate training in psychological
and spiritual care supportive strategies
(NICE, 2004). If clinicians feel that the
patients concerns are outside their area
of competence, they need to refer the
patient to another professional (e.g.
psychiatrist, community psychiatric nurse,
GP, palliative care specialist or spiritual care
adviser) (NICE, 2004) (Recommendations
2 and 3). Psychotherapeutic interventions
have been advocated for the treatment of
feelings of powerlessness and hopelessness
(Yu et al, 2008). However, there is minimal
high-quality evidence relating to the
effectiveness of psychotherapies in the
treatment of CHF patients with emotional
distress, including depression and anxiety
(Lane et al, 2005). Nevertheless, therapies
such as those listed in Table 6 should be
considered, even at the end of life, as they
might be beneficial (Lane et al, 2005).
For example, psychotherapy will enable
patients to explore issues of dying and
existence (Akechi et al, 2008). Also, the
negative thought processes that have been
found in patients with heart failure (Boyd
et al, 2004) may respond to cognitivebehavioural therapy (Akechi et al, 2008).
Relaxation techniques, listening to music
(Bradt and Dileo, 2009) and massage/
aromatherapy may be helpful in relieving
stress and anxiety (South East London
Cancer Network Palliative Care and End
of Life Care Coordinating Group, 2009)
(Recommendation 4).

Examples of psychotherapies that may

be beneficial in chronic heart failure

Discussion of the diagnostic features

of depression is outside the remit of

It is also important to acknowledge

the spiritual dimension in the lives of
patients with CHF (Murray et al, 2004).
Professionals tend to avoid discussions
about spiritual needs because of time
constraints, inadequate training and poor
understanding of spirituality (Murray
et al, 2004). Signs of spiritual distress in
patients include fear, doubt or despair
and feeling isolated, lacking in control and
that life is not worthwhile. Patients may
ask, Where do I fit in? and What have I
done to deserve this? (Murray et al, 2004).
Patients with spiritual wellbeing, on the
other hand, tend to express hope, feel
valued and that they have dignity, are able
to maintain relationships and a social life
and feel that their life has meaning (Murray

Counselling
Stress management
Psychotherapy
Cognitive behavioural therapy
Life review therapies, e.g. dignity
therapy
Supportive groups/networks

3
D

End of Life Journal, 2011, Vol 1, No 2

Sources: Heart Failure Society of America

(2006), Akechi et al (2008), Bradt
and Dileo (2009), NICE (2009), South
East London Cancer Network Palliative
Care and End of Life Care Coordinating
Group (2009)

Recommendation 4

Level of evidence
and grade of
recommendation

4. Psychotherapeutic
interventions at the
end of life might be
beneficial. However, this
recommendation is based
on incomplete evidence.
The randomised
controlled trials that have
been carried out have
small samples with limited
internal and external
validity

1B

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Clinical REVIEW
this article. However, all healthcare
professionals, including nurses, should be
able to recognise key characteristics of
depression (Table 7). Symptoms usually
have to be present for at least 2 weeks

Table 7
Key characteristics of depression
Loss of interest and enjoyment in
ordinary experiences (anhedonia)
Low mood
Fatigue
Sleep disturbances
Preoccupation with thoughts
and feelings of worthlessness
Inappropriate guilt or regret
Low self-worth
Withdrawal from social situations
and activities
Functional decline
Agitation or lethargy
Anger and irritability
Alterations in appetite and weight
Suicidal thoughts and desire
for hastened death
Sources: American Psychiatric Association
(1994), World Health Organization
(2007), NICE (2010b)

and not be in the context of bereavement

(American Psychiatric Association, 1994;
World Health Organization, 2007). All
patients with CHF should be screened
regularly for depression using validated
tools (SIGN, 2007). Wasteson et al (2009)
reviewed assessment and classification
systems for measurement of depression
in palliative care cancer patients.They
identified a spectrum of assessment
instruments (Table 8). All the tools
conceptualise and define depression
differently.There is a need for universal
agreement on the various instruments
diagnostic scores for depression in
advanced stages of disease (Hotopf et
al, 2002; Wasteson et al, 2009). However,
the definition of distress at the end of
life involves more than just psychiatric
definitions of depression and anxiety.
Vodermaier et al (2009) systematically
reviewed screening instruments for
emotional distress in cancer patients
according to psychometric criteria
(reliability, validation, generalisability) and
performance (sensitivity and specificity).
Although they examined the use of these
instruments in palliative cancer patients,
some of their recommended instruments
could also be used in palliative heart-failure
patients.Their categorisation of measures
into ultra-short, short and long measures
is useful. As an ultra-short measure, the
combined depression questions (Are
you depressed? and Have you lost
interest?) performed best.The Centre for
Epidemiologic Studies Depression Scale
(Radloff, 1977) and the Hospital Anxiety

Table 8
Assessment instruments for depression in palliative care patients
= Structured and unstructured diagnostic interviews, such as interviews based
on the Diagnostic and Statistical Manual of Mental Disorders-IV-TR (American
Psychiatric Association, 1994)
= Questionnaires such as the Beck Depression Inventory (Beck et al, 1961),
the Hamilton Depression Rating Scale (Hamilton, 1967) and the Hospital Anxiety
and Depression Scale (Zigmond and Snaith, 1983)
= General questionnaires such as health-related quality-of-life questionnaires that
include items on emotional distress, e.g. the Edmonton Symptom Assessment
System (ESAS) (Bruera et al, 1991)
= Simple single-item questions, e.g. Are you depressed? and Have you lost interest?
(Chochinov et al, 1997; NICE, 2010b)

End of Life Journal, 2011, Vol 1, No 2

and Depression Scale (Zigmond and

Snaith, 1983) were also recommended,
as were the Beck Depression Inventory
(Beck et al, 1961) and the General Health
Questionnaire-28 (Goldberg and Williams,
1978).These findings have been supported
elsewhere (Lloyd-Williams et al, 2003;
Evans et al, 2005; Delville and McDougall,
2008;Thekkumpurath et al, 2008; Ketterer
and Knysz, 2009).
If clincians feel unsure about using
tools such as the Hospital Anxiety and
Depression Scale (Zigmond and Snaith,
1983), which require a small amount of
training, the two ultra-short standard
questions (see above) have been found to
be effective in ascertaining the possibility
that depression may be present (SIGN,
2007; NICE, 2010b). In general day-to-day
assessments, it is important that clincians
ask patients about their mood, not just
physical symptoms. Symptom burden
in CHF is high in the later stages of the
condition and symptoms of depression
can mimic those of advanced disease, e.g.
anorexia, fatigue and weight loss (Reich,
2008). If it is suspected that a patient
with CFH may be depressed, the person
should be referred to a psychologist
or psychiatrist for further assessment
(Jaarsma, 2005; SIGN, 2007; NICE, 2010b)
(Recommendations 5 and 6).

Recommendations 5 and 6

Level of evidence
and grade of
recommendation

5. Assess depression and

anxiety with validated
tools. Ultra-short
questions (e.g. Are you
depressed? and Have you
lost interest?) or short
and long questionnaires
are suitable. It is
important to ask about
mood, not about somatic
complaints, as symptom
burden is high

1+
B

6. Refer patient to
a psychologist or
psychiatrist for further
assessment and therapy
in cases of strong
emotional distress

4
D

Page 8 of 11

Clinical REVIEW
Recommendations for future research
8 The most effective psychological
interventions to alleviate emotional
distress in patients with heart failure
need to be researched in randomised
controlled trials, with large samples.
8 The focus of the research needs to be
on patients with more moderate to
severe symptoms of emotional distress
and patients with advanced heart
failure.
8 The potential harms and risks of
the treatment strategies need to be
assessed for both the patient and
family/carers.

Conclusion
CHF has a rising prevalence and is
a leading cause of death in the UK.
Patients with CHF often present with
co-morbidities and experience problems
associated with frailty and ageing. Symptom
burden in heart failure is high, particularly
in the advanced stages of disease.The
quality of life of patients with heart failure
is as low as, or worse than, that of patients
with cancer. Barriers to end-of-life care
of heart-failure patients relate to the
uncertain disease trajectory and the need
for staff training in communication and
symptom management. Patients with heart
failure have a high prevalence of emotional
distress, including depression and anxiety.
Symptoms of depression and anxiety
increase in later stages of heart failure.
Evidence-based recommendations for
the management of psychological distress,
such as depression and anxiety, are scarce.
Evidence is mainly derived from qualitative
studies about the lived experience in
heart-failure patients. Overall, qualitative
studies have shown that heart-failure
patients experience a multitude of changes
in their daily lives that are associated with
loss of roles and relationships. Physical
symptoms are particularly burdensome.
However, emotional problems are just as
prevalent, although less frequently elicited
by healthcare professionals. In the later
stages of the disease, symptom-related
distress increases. NYHA class IV patients
are uncertain about prognosis and require
information and support. Not having
enough information about the prognosis
and disease trajectory has been found
to be an exacerbating factor for anxiety.
Family support and caregiving can both
ameliorate anxiety and depression or
End of Life Journal, 2011, Vol 1, No 2

enhance them, through the guilt associated

with feeling a burden on loved ones. EOLJ

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Key Points
8 The quality of life of patients with
heart failure is as low as (or worse
than) that for patients with cancer.
8 Patients with end-stage heart failure
experience a high burden
of physical, psychological, spiritual
and social symptoms.
8 Emotional distress among patients
with heart failure is very common.
8 Depression and anxiety are risk
factors for mortality in heart failure.
8 Barriers to end-of-life care
of heart-failure patients relate
to the uncertain disease trajectory
and the need for staff training
in communication and symptom
management.

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