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Emotional Distress in Patients With Advanced Heart Failure: Review
Emotional Distress in Patients With Advanced Heart Failure: Review
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
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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).
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)
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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.
Table 3
Scottish Intercollegiate Guidelines Network level of evidence (www.sign.ac.uk)
1++
1+
1-
2++
2+
2-
Expert opinion
Table 4
Scottish Intercollegiate Guidelines Network grades of recommendation (www.sign.ac.uk)
Evidence level 3 or 4; or
Extrapolated evidence from studies rated as 2+
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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.
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).
Recommendation 1
Level of evidence
and grade of
recommendation
2++
B
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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,
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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
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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
Table 6
Counselling
Stress management
Psychotherapy
Cognitive behavioural therapy
Life review therapies, e.g. dignity
therapy
Supportive groups/networks
3
D
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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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)
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)
Recommendations 5 and 6
Level of evidence
and grade of
recommendation
1+
B
6. Refer patient to
a psychologist or
psychiatrist for further
assessment and therapy
in cases of strong
emotional distress
4
D
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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
References
Page 9 of 11
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the epidemiological evidence, explanatory
mechanisms and management approaches.
Clinical Psychology Review 28(2): 288306
Goodlin SJ, Hauptman PJ, Arnold R et al
(2004) Consensus statement: Palliative and
supportive care in advanced heart failure.
Journal of Cardiac Failure 10(3): 2009
Grant E, Murray SA, Kendall M, Boyd K,
Tilley S, Ryan D (2004) Spiritual issues
and needs: perspectives from patients with
advanced cancer and non-malignant disease. A
qualitative study. Palliative and Supportive Care
2(4): 3718
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failure: early diagnosis and treatment options.
International Journal of Cardiology 125(2):
22031
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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