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Official reprint from UpToDate
www.uptodate.com2013 UpToDate
Author
Sarah J Goodlin, MD, FACC,
FAAHPM
Section Editors
Sharon A Hunt, MD
R Sean Morrison, MD
Deputy Editor
Susan B Yeon, MD, JD, FACC
End of life considerations for heart failure patients
Disclosures
All topics are updated as new evidence becomes available and our peer review processis complete.
Literature review current through:Jul 2013. | This topic last updated:oct 12, 2012.
INTRODUCTION Heart failure (HF) is a common and frequently life-limiting illness with increasing
prevalence, particularly among the growing population of elderly persons. Nearly 300,000 persons in theUnited States die with HF annually, and HF was the primary cause of death for over 60,000 persons in
2006 in the United States. Hospitalization rates for decompensated HF are high and one-third or more of
HF patients die within a year of a hospitalization for HF [1]. The average life expectancy following
diagnosis of HF is under six years. However, the course of HF is variable, and some persons live 10
years or more years with good medication response and dietary and lifestyle management. (See
"Prognosis of heart failure"and "Predictors of survival in heart failure due to systolic dysfunction".)
Variability in the course of HF makes identifying the end of life in patients with HF challenging and limited
data are available to guide end of life care. Nonetheless, clinicians and researchers have called for
palliative care for advanced HF [2], and major cardiology society guidelines recognize the need for
palliative care for HF patients [3-5].
IDENTIFICATION OF END-STAGE HF Individuals with advanced or end-stage heart failure (HF)
have marked symptoms of dyspnea, fatigue or symptoms relating to end-organ hypoperfusion at rest or
with minimal exertion despite maximal medical therapy [2]. This description conforms to stage D and the
advanced phase of Stage C HF as defined in the American College of Cardiology/American Heart
Association (ACC/AHA) HF guidelines [4]. Persons with advanced HF typically have frequent admissions
to the hospital or emergency department with decompensation and volume overload. Patients with
advanced HF who comply with self-care management have rates of hospitalization and other events
comparable to less ill HF patients [6]. (See "Evaluation of the patient with heart failure or
cardiomyopathy", section on 'Definition and classification'.)
The challenge for a clinician evaluating a patient who appears to have advanced HF is whether there are
remediable interventions, adjustments to medications, or other therapies that might improve the patient's
function, or whether the patient truly has end-stage disease [2]. Heart failure patients may have dramatic
worsening of functional status and then impressive recovery to a plateau of reasonable function with
medical therapy and/or device or surgical interventions.
Clinicians should evaluate the HF patient with apparently refractory HF for high sodium intake,
noncompliance with HF treatments, sleep disordered breathing (SDB), occult ischemia, deleterious
medications, and other insults that may have contributed to the poor status. In addition, HF treatment
should be reevaluated to maximize evidence-based therapies. (See "Evaluation of acute
decompensated heart failure", section on 'Identification of precipitating factors'and "Cheyne-Stokes
breathing and obstructive sleep apnea in heart failure"and "Overview of the therapy of heart failure due
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to systolic dysfunction", section on 'Drugs to avoid'.)
Specialized strategies are considered for patients with refractory HF, including continuous intravenous
positive inotropic therapy, hemofiltration, cardiac transplantation, mechanical circulatory support, and
high risk revascularization [4]. (See "Management of refractory heart failure"and "Indications and
contraindications for cardiac transplantation"and "Intermediate- and long-term mechanical cardiac
support"and "Surgical management of heart failure".)
Estimation of prognosis Identifying patients likely to die soon from HF is challenging, even when
using predictive tools and models [7]. Even patients at high risk of dying in a six-month time frame may
live one to two years [8]. Three or more hospitalizations for HF and age over 85 years were associated
with one year or less survival in one retrospective analysis [9]. Models and tools are available to assist
clinicians with prognostic estimates [10,11], although at best these provide a range or likelihood of a
given life-expectancy. (See "Predictors of survival in heart failure due to systolic dysfunction"and
"Prognosis of heart failure"and "Treatment and prognosis of diastolic heart failure", section on
'Prognosis'.)
COURSE TO DEATH IN HF PATIENTS The course to death for HF patients varies with illness
severity [12,13] as well as the degree of adherence to evidence-based HF therapies [14-16]. Withmeticulous management in HF programs, patients with advanced disease may live five years or longer
[17]. (See "Prognosis of heart failure".)
Pulmonary edema or severe congestion is rare in dying HF patients receiving expert HF management,
thus these should be treated and not accepted as usual. Sudden cardiac death (SCD) predominates as
the cause of death for persons with less advanced or less symptomatic HF, where as progressive HF
with hypotension, end-organ hypoperfusion, or metabolic derangement is a more common cause of
death for persons with advanced HF managed in academic HF programs [17,18], although SCD also
occurs in advanced HF [19]. SCD in patients with advanced HF is often associated with severe
bradycardia or pulseless electrical activity not responsive to cardioversion or pacing [20].
Treatments such as beta blockers that block or reduce neurohormonal activation in HF reduce the
incidence of SCD. (See "Ventricular arrhythmias in heart failure and cardiomyopathy", section on 'Effect
of HF therapy on ventricular arrhythmia'.)
Heart failure patients often have severe functional compromise with limitations in activities of daily living
for a year or more prior to death [21]. Loss of ability to perform usual activities, social isolation, shortness
of breath, anxiety and having to cope with uncertainty were issues identified in a review of qualitative
studies of HF patients confronting the end of life [22]. In one study, many patients hospitalized with
NYHA Class IV HF were concerned about avoiding burdening their family, yet even more identified
avoiding life support if there was no hope of meaningful recovery and receiving honest information from
their doctor as important when considering the end of their lives [23].
COMMUNICATION WITH THE PATIENT AND FAMILY Discussions with the patient and family (or
caregiver) about quality of life and prognosis are recommended as part of HF management in a 2004
consensus statement [2], in the 2010 HFSA Heart Failure management guideline and in the 2009
ACC/AHA chronic heart failure guidelines [4,24]. Discussions with patients about their prognosis differ
depending on the phase of their illness and co-morbidities. However, an important component of the
conversation is acknowledgment that death comes earlier for HF patients than others.
To ease an ultimate discussion of "end of life," the life-limiting nature of HF should be acknowledged with
patients and families early in care, while simultaneously planning with patients to optimize therapy to
improve function and extend life as appropriate for their values and preferences [25]. Patients with HF
should have a plan for management of possible SCD at any point in their illness.
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Talking with a patient who is approaching the end of life about their poor prognosis is a "bad news"
conversation, and should be structured as such [25]. A majority of HF patients overestimate their life
expectancy [26]. Many patients are surprised to learn that they will die from HF, because they have not
perceived their illness as life-limiting.
A basic principle to guide communication is "Ask-Tell-Ask:"
Ask what the patient understands and what they want to knowTell the answers to their queries and correct misunderstandings
Tell information you feel is critical to decisions about care
Ask what questions they have and confirm their understanding.
The conversation should end by explaining a plan for the next steps. The uncertainty of the individual's
course and length of life should be acknowledged as should the clinicians' commitment to providing care
or continuity with other providers. Prognostic estimates should be presented as a range of time, with a
qualifying statement that some people live longer and some shorter than the range. (See "Prognosis of
heart failure", section on 'Predictive models'.)
Issues for HF patients and their families differ depending upon illness severity and comorbidities as well
as age and personal attitudes and beliefs. Thus, ongoing discussions with patients and families should
recur with new disease developments and changes in status. When possible, discussions regarding end
of life care should be initiated while the patient is still capable of participating in decision-making.
Planning care is critical, and can be framed as "hope for the best and prepare for the worst" [27]. The
scope of plans is broad and should include the following:
Identification of an approach to care (hospital versus home care or hospice, for example)
Identification of goals (continued interventions to maximize function or length of life versus
simplifying treatment and focusing on managing symptoms)
A plan to manage current interventions to achieve goals, including each medication and device
Assistance for family and care givers in delivering care
Resources for spiritual and emotional support for patient and family
Honest communication and decision making with patients and their families can smooth the path toward
the end of life. A clear approach to care should be chosen, and the patient and family should have
instructions for how to respond to clinical events such as pulmonary edema and SCD. Patient decisions
about treatment, including hospice, resuscitation, and implantable cardioverter defibrillator (ICD) use
(see 'ICD deactivation'below), should be re-addressed often because decisions may change over time
[24].
Some patients will prefer to try to live as long as possible. In this situation, clear goals can be set (eg,
"another visit with family") and the "hope for the best, plan for the worst" dichotomy should be followed to
allow the patient to attend to affairs and identify conditions under which the he or she would no longer
wish life to be prolonged (eg, "unable to communicate with family or friends"). Even while working with
the patient to prolong life, the conversation about dying should be framed to identify the patients and
familys preference for the location of and an approach to death (hospital, intensive care unit or home
with hospice care) for the future or if things do not go as hoped, rather than suggesting that death could
be prevented.
For some HF patients, a phase in which the patient is clearly nearing death may be characterized byprogressive somnolence and/or decreased oral intake, and treatments can be withdrawn, except those
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that seem to provide comfort. Most families and patients will benefit from connection to spiritual, social,
and bereavement services to negotiate the end of life. (See 'Emotional, spiritual, psychological, and
social support'below and "Ethical issues near the end of life".)
MANAGEMENT OF THE END OF LIFE Clinicians managing patients with advanced HF must first
optimize medical and other interventions for HF in an attempt to maximize function and well being.
Collaboration between clinicians, experts in HF care, and those experts in end of life care should be
ensured.
Cognitive impairment, including executive dysfunction in advanced HF, makes it difficult for the patients
to follow logical sequences of action. Thus, patients and their families benefit from very clear written
directions and/or regular telephone instructions, including specification of a weight above which they
should take additional diuretics.
Challenges to end of life care Knowledge of symptom management in HF lags behind knowledge of
how to impact other outcomes. In patients with New York Heart Association (NYHA) functional class
III-IV HF, the two major classes of drugs that improve mortality (angiotensin converting enzyme inhibitors
and/or angiotensin II receptor blockers, and beta blockers) also improve dyspnea, or a composite of HF
symptoms, and the requirement for diuretics. (See "Overview of the therapy of heart failure due tosystolic dysfunction", section on 'Pharmacologic therapy of HF'and "ACE inhibitors in heart failure due to
systolic dysfunction: Therapeutic use", section on 'Benefit of ace inhibitors'and "Angiotensin II receptor
blockers in heart failure due to systolic dysfunction: Therapeutic use", section on 'Symptomatic benefit'
and "Use of beta blockers in heart failure due to systolic dysfunction", section on 'Clinical benefit'.)
The impact of interventions on specific symptoms was not evaluated in most large trials for patients with
advanced HF. In addition, studies of palliative care interventions that included HF patients reported
limited data on patient characteristics and the interventions utilized. The lack of clearly identified
interventions for palliative care in HF, as well as variable end of life care provided in hospice for HF
patients [28], present significant barriers to initiating end of life care for HF patients.
Provision of palliative care at the end of life for HF patients is further challenged by limitations in clinician
expertise. Cardiologists and HF specialists with expertise in HF management may not have training in
palliative care, while generalists, geriatricians, and other clinicians with expertise in hospice and
palliative care often lack knowledge and expertise in HF management [29,30]. Cardiologists not versed
in options for palliative care in their community might best set goals and identify an approach to care
together with physicians with expertise palliative care.
Limitations in delivery of care may also lead to suboptimal adherence to evidence-based therapies that
could improve quality of life as well as survival. The majority of persons who care for HF patients are
primary care clinicians, yet as a group these providers provide less evidence-based care, and may thus
fail to optimally improve quality of life for patients with advanced HF, particularly elderly patients [31,32].
The effect of specialty care and disease management programs is discussed separately. (See
"Strategies to reduce hospitalizations in patients with heart failure".)
Withdrawal of evidenced-based therapies may be appropriate during end-stage care for certain patients
with persistent advanced HF, particularly those with hypotension or left ventricular systolic dysfunction
with progressive low-output and hypotension. When these treatments are discontinued, a plan to
manage symptoms should be enacted.
Symptom management Symptoms of fatigue, dyspnea, pain, sleep disturbance, cognitive
impairment, depression and anxiety, and anorexia or weight loss have been well documented in patients
with advanced HF [33-36]. Symptom burden accounts for much of worsened HF-related quality of life in
HF patients [37], and the spiritual well-being, depression symptoms and symptom burden scores ofadvanced HF patients parallels that of patients with advanced cancer [38].
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As in other chronic heart and serious illnesses, assessment of symptoms using a questionnaire or
standardized interview will yield more symptoms than waiting for patients to volunteer symptoms. A
general approach to symptom assessment at the end of life is discussed separately. (See "Overview of
comprehensive patient assessment in palliative care"and "Approach to symptom assessment in
palliative care".)
Management should be aimed at optimizing HF treatment as well as addressing specific symptoms.
Medications specifically targeting symptom relief, such as opioids for analgesia or relief of dyspnea are
endorsed in current guidelines [3]. Palliative therapies such as opioid medications may also improve
exercise capacity with increase in peak oxygen consumption.
Treatment of HF Optimization of HF therapy is a key component of advanced HF care, even after
the presence of advanced persistent HF has been established and the major goal is palliation of
symptoms. Some key components of HF treatment are highlighted here. Treatment of HF is discussed in
detail separately (see "Overview of the therapy of heart failure due to systolic dysfunction"and
"Management of refractory heart failure"and "Treatment of acute decompensated heart failure: General
considerations").
Fluid overload should be reduced with diuretics (including loop diuretics, thiazides, and aldosteroneantagonists, as indicated) and fluid and salt intake should be restricted, as tolerated. Modest stable
elevations in the blood urea nitrogen and serum creatinine may be accepted, if necessary, and moderate
hypotension may be allowed as tolerated to achieve the best possible reduction in congestion. Addition
of an aldosterone-blocking agent such as spironolactoneand aggressive treatment of sleep-disordered
breathing often help to achieve best possible volume status. Consultation from a clinician expert in HF
management is often beneficial.
Assessment of patient weight may be the most effective noninvasive method for documenting volume
status. Body weight can also be utilized to guide adjustment in medications by patients or their care
providers. This monitoring and medication adjustment, called self-management also helps patients and
their families maintain a sense of control over their illness even when HF is advanced. For accuratecomparisons, daily measurements should use the same scale and should be performed at the same
time, usually in the morning, prior to eating and after voiding. Weight comparisons may require
adjustment for variations in food intake, particularly since appetite may be diminished. (See 'Anorexia
and cachexia'below.)
Angiotensin inhibition, angiotensin receptor blocking, beta blockers, and aldosterone antagonists both
prolong survival and alleviate symptoms. (See "Overview of the therapy of heart failure due to systolic
dysfunction"and "ACE inhibitors in heart failure due to systolic dysfunction: Therapeutic use", section on
'Severity of HF'and "Use of beta blockers in heart failure due to systolic dysfunction", section on 'Class
IV HF'and "Use of aldosterone antagonists in heart failure".) Heart failure contrasts with other diseases
at the end of life in that these medications (initiated to prolong survival) palliate HF symptoms, and thusare not routinely abandoned in advanced disease.
However, patients with advanced HF may not tolerate their previous doses of these medications. When
patients become intolerant of HF medications due to hypotension, one strategy is to reduce the doses of
!-blockers and ACE inhibitors or ARBs to lower-tolerated doses. Another approach is to eliminate one
class of medication, while maintaining others. Research has not provided the evidence to suggest which
tactic is most effective or best tolerated, however HF experts generally agree that to provide palliation, it
is important to continue some agent to block the neurohormonal abnormalities of the HF syndrome.
Intravenous inotropes are effective palliative therapies for certain end-stage HF patients with systolic
dysfunction [39]. The ACC/AHA HF guidelines suggest that continuous intravenous infusion of a positive
inotropic agent may be considered for palliation of symptoms in patients with refractory end-stage HF [4].
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(See "Management of refractory heart failure"and "Inotropic agents in heart failure due to systolic
dysfunction".)
Fatigue Fatigue is clearly associated with both the psychological and physical condition of
patients with HF [40]. Fatigue may be due to decreased cardiac output, elevated neurohormones,
deconditioning, sleep impairment, and depression and/or anxiety.
Assessment and treatment of fatigue should be multifaceted:
Improving dietary compliance by restricting fluids and sodium intake results in reduced fatigue and
edema [41].
In HF patients with anemia, erythropoietin therapy may enhance exercise capacity [42]. (See
"Impact of anemia in patients with heart failure".)
Opioids and caffeine (and possibly other stimulants) may improve exertional fatigue [43,44].
In chronic HF, selective thigh muscle strengthening improves fatigue [45]
Approximately one-half of patients with advanced HF have sleep-disordered breathing (SDB). Both sleepapnea and Cheyne-Stokes respiration cause worsened exercise capacity. Optimization of medical
management of heart failure is the primary therapy for patients whose HF is complicated by SDB,
because it improves HF-related outcomes and may improve SDB. (See "Cheyne-Stokes breathing and
obstructive sleep apnea in heart failure".) For patients who have persistent SDB despite optimization of
HF therapy, treatment of SDB has not been shown to improve HF-related mortality or hospitalization
rates, although continuous positive airway pressure (CPAP) improves left ventricular function, daytime
alertness and exercise capacity [46] and nocturnal oxygen may improve exercise capacity and
neurohormonal status [47]. These issues are discussed separately. (See "Cheyne-Stokes breathing and
obstructive sleep apnea in heart failure", section on 'Treatment'.)
Dyspnea Dyspnea treatment has traditionally focused on reducing congestion with HF therapy,particularly loop diuretics. (See 'Treatment of HF'above.)
Nitrates also reduce left ventricular end diastolic pressure and are commonly prescribed to reduce
dyspnea and improve exercise tolerance in patients with and without ischemic etiology of HF [45]. Nitrate
therapy may reduce dyspnea at night and with exercise [4]. The combination of hydralazineand a nitrate
is reasonable in patients with persistent HF symptoms on an ACE inhibitor and beta blocker, while the
evidence is less well established in patients who cannot tolerate an ACE inhibitor or ARB [4]. (See
"Overview of the therapy of heart failure due to systolic dysfunction".)
Exercise training is recommended in patients with NYHA class II and III HF since it reduces dyspnea and
improves endurance and quality of life. However, the role of exercise in patients with class IV HF has not
yet been defined, although there is evidence that specific exercise to strengthen thigh muscles in
advanced HF patients improves dyspnea [48]. (See "Cardiac rehabilitation in patients with heart failure".)
Opioids reduce hypoxic ventilatory drive, act on opioid receptors in the lung, and may unload volume.
Morphine, dihydrocodeine, or diamorphine improve exercise tolerance and/or exercise-related dyspnea
in patients with HF [43,49,50]. The use of opioid medications for dyspnea is not a FDA-approved
indication.
Pain Pain prevalence ranges from 40 to 75 percent in persons with advanced HF [36,51,52], but
the etiology and location of such pain remains to be elucidated [35]. Clinicians should inquire about pain
and develop strategies for management.
Arthritis may be one of the main sources of pain in older persons with HF, but a major class of treatment
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for arthritis, the nonsteroidal antiinflammatory drugs (NSAIDs), are contraindicated in HF patients
because they impair renal function, cause sodium and fluid retention, worsen HF and increase the risk of
hospitalization. (See "Nonselective NSAIDs: Adverse cardiovascular effects", section on 'Patients with
heart failure'.)
Local treatments such as heat or cold therapy and physical therapy should be considered in a
multidisciplinary approach to pain management. Topical capsaicinand topical salicylatesmay also be
considered, although limited data are available on their use. (See "Nonpharmacologic therapy of
osteoarthritis"and "Investigational approaches to the pharmacologic therapy of osteoarthritis", section on
'Counter-irritants and rubefacients'.)
Low-dose opioids are effective in reducing pain without significant toxicity in older persons with arthritis
[53] and may be considered in patients with advanced HF when other therapies are not adequate.
Opioids with active renal-excreted metabolites (such as morphine) should not be used chronically
because of the prevalence of renal dysfunction in advanced HF patients, although other opioids without
active metabolites (such as fentanyl) or with GI excretion (such as methadone) may be appropriate for
chronic use. (See "Pharmacologic therapy of osteoarthritis".)
Anorexia and cachexia Anorexia, weight loss, and protein malnutrition are common features ofadvanced HF and are related to the associated neurohormonal and cytokine abnormalities, and to the
skeletal myopathy that accompanies the HF syndrome. Anorexia may also result from volume overload,
particularly when intestinal edema and hepatic congestion are present. Treatment should include
optimizing HF medical management including volume status and ACE inhibitor therapy [54].
Since changes in weight may reflect changes in food intake and body size as well as fluid balance,
weight targets for diuretic use may require adjustment over time.
Issues related to stopping nutrition and hydration at the end of life are discussed separately. (See "End
of life care: Stopping nutrition and hydration".)
Emotional, spiritual, psychological, and social support The impact of HF on quality of life for bothpatient and family is complex and extends beyond physical symptoms [55]. The loss of physical and
social function is significant. HF patients are frightened of dying, worried about burdening families, and
experience hopelessness, isolation, disability and uncertainty regarding their course [56,57]. (See
"Psychosocial issues in advanced illness".)
Patients benefit from active-behavioral coping style including strategies to constructively control their HF
[58]. Approaches to spiritual issues and anticipatory grief, such as used in other advanced illnesses, are
appropriate in HF [55,59]. At minimum, clinicians should screen for spiritual concerns and sources of
support [60] and acknowledge patients' losses and sources of grief. (See "Religion, spirituality, and end
of life care".)
Depression in advanced HF is associated with poorer health status, more limitation in physical function,
breathlessness and fatigue [61]. Advanced HF patients should be screened for depression and treatment
should be initiated with supportive counseling [62]. Limited data are available on pharmacologic,
cognitive, and exercise therapy for depression in HF patients. A small controlled trial of paroxetinefor
patients with depression and HF resulted in improved depression and psychological aspects of quality of
life [63], yet a larger trial of sertralineat low doses did not benefit depressed HF patients [64]. Some
patients will benefit from pharmacological therapy with selective serotonin reuptake inhibitors (SSRIs),
psychostimulants such as methylphenidateor tricyclic antidepressants such as nortriptylineand
desipramine, which have less significant anticholinergic effects such as orthostatic hypotension than
other tricyclics [65]. Medication side effects to be monitored include QT prolongation with tricyclic
antidepressants and hyponatremia (particularly in older patients) with SSRIs [66]. (See "Assessment andmanagement of depression in palliative care"and "Initial treatment of depression in adults".)
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ICD deactivation Patients with end-stage HF who have implantable cardioverter defibrillators (ICDs)
should be provided with information concerning the potential benefits and burdens of ICD therapy to
enable an informed decision on whether to deactivate the device [2-4,24,67]. A 2010 Heart Rhythm
Society expert consensus statement discusses ethical and legal issues and management of ICDs and
other electrical devices in patients nearing the end of life [24]. A sample ICD deactivation policy including
ethical rationale, process of informed consent, and process for deactivation has been proposed [67].
Turning off the defibrillator function should be presented as a simple step which may be consistent withthe goal of preserving quality of life during the dying process. The ICD shocking function is deactivated
by reprogramming the device, which can be performed in a clinic, hospice, or home setting (see
"Implantable cardioverter-defibrillators: Patient follow-up", section on 'Discontinuation of ICD therapy'). A
decision to deactivate any accompanying pacemaker should be made separately as this involves
consideration of the indications for pacemaker therapy.
If the decision is made to leave an ICD active, emergent deactivation to stop repeated shocks can be
accomplished for most devices (depending upon the brand and model) by placing a magnet designed for
pacemakers over the ICD. While the magnet is in place, the ICD will not sense and will not deliver
treatments. For most devices, ICD therapy is suspended only while the magnet is in place but some
models are reprogrammed by the magnet.
Hospice care Hospice care may serve as a resource for end-of-life care for patients and their families
in the home, hospital setting, or special hospice unit. Hospice teams provide multidisciplinary
coordinated care for bereavement, spiritual, psychological and social issues in addition to medical and
nursing care. The principles and general use of hospice care are discussed separately. (See "Hospice:
Philosophy of care and appropriate utilization in the United States".)
The Medicare hospice benefit requires physicians to certify that patients have a life expectancy of six
months or less if the disease runs its likely course. Difficulties identifying when a HF patient meets this
criterion may limit hospice referrals. Current hospice referral guidelines for "end-stage cardiac disease"
include New York Heart Association (NYHA) Class IV (symptomatic at rest), or Class III (symptomatic
with activities of daily living) with other comorbidities, for whom "maximal" therapies were tried, not
tolerated or refused [68]. Relying on NYHA classification probably includes patients with longer than
six-month life expectancy, and prognosis needs to be individually assessed. (See "Evaluation of the
patient with heart failure or cardiomyopathy", section on 'Definition and classification'.)
Hospice use is substantially lower in HF patients than in those with advanced cancer [69]. However, use
of hospice among HF patients appears to be increasing. In a study of over 200,000 Medicare
beneficiaries with HF, hospice use in the last six months of life increased from 19 percent in 2000 to 40
percent in 2007 [70]. Referral to hospice after hospitalization for acute decompensated HF varies
geographically and by hospital characteristics [71]. Patients referred to hospice were less likely than
other HF patients to have received evidence-based therapies prior to discharge, although this difference
may reflect greater illness severity rather than differences in quality of care [71].
Clinicians and patients with advanced HF may misunderstand the role of hospice care because of
misconceptions about prognosis or about hospice (such as that it is limited to patients with cancer or that
it would require abandonment of appropriate HF therapy).
Hospices generally provide oral medications for HF and for symptom management. Few hospices
provide more complex treatments, such as intravenous inotrope and continuous positive airway pressure
(CPAP), or have staff education, specific care plans for HF care, or protocols for management of
implantable defibrillators and other devices [32]. Larger hospice agencies are more likely to provide
complex or expensive therapies.
Clinicians should continue to participate in patient management after the patient enrolls in hospice.
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Ongoing education of hospice staff about HF management is critical, and meticulous management of
fluid status should be continued to maximize quality of life as patients approach death. Clinicians caring
for HF patients likely to receive intravenous inotropes for palliative care should build relationships with
hospice agencies that are equipped to provide them.
INFORMATION FOR PATIENTS UpToDate offers two types of patient education materials, The
Basics and Beyond the Basics. The Basics patient education pieces are written in plain language, at
the 5th
to 6th
grade reading level, and they answer the four or five key questions a patient might have
about a given condition. These articles are best for patients who want a general overview and who prefer
short, easy-to-read materials. Beyond the Basics patient education pieces are longer, more
sophisticated, and more detailed. These articles are written at the 10th
to 12th
grade reading level and
are best for patients who want in-depth information and are comfortable with some medical jargon.
Here are the patient education articles that are relevant to this topic. We encourage you to print or e-mail
these topics to your patients. (You can also locate patient education articles on a variety of subjects by
searching on patient info and the keyword(s) of interest.)
Basics topics (see "Patient information: Medical care during advanced illness (The Basics)"and
"Patient information: Advance directives (The Basics)")
SUMMARY
Palliative care should be provided throughout the course of HF care, based upon patient and
family needs, rather than upon an estimate of prognosis.
Communication with HF patients and their families about their preferences for care and the
potential life-limiting nature of HF early in the course of illness will facilitate later conversations
when the patients disease status worsens or they approach the end of life. The majority of HF
patients prefer honest communication about their illness from doctors.
Meticulous management of HF and associated syndromes, such as sleep-disordered breathing,
are a critical component of palliation of symptoms in HF patients.
Palliative care that is multidisciplinary is indicated to address the broad physical and psychological
symptom burden in advanced HF. Some data support specific treatments for symptoms, although
extrapolation from chronic HF data is necessary because few data inform care for advanced HF
patients.
ACKNOWLEDGMENT The UpToDate editorial staff would like to thank Dr. Stephen S. Gottlieb for his
contributions as a Section Editor to previous versions of this topic review.
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