UTD-CP End of Life Heart Failure Patients

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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

End of life considerations for heart failure patients http://www.uptodate.com/contents/end-of-life-considerations...

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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.

Use of UpToDate is subject to the Subscription and License Agreement.

REFERENCES

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Goodlin SJ, Hauptman PJ, Arnold R, et al. Consensus statement: Palliative and supportive care in

advanced heart failure. J Card Fail 2004; 10:200.

2.

Heart Failure Society of America, Lindenfeld J, Albert NM, et al. HFSA 2010 Comprehensive Heart

Failure Practice Guideline. J Card Fail 2010; 16:e1.

3.


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Hunt SA, Abraham WT, Chin MH, et al. 2009 focused update incorporated into the ACC/AHA 2005

Guidelines for the Diagnosis and Management of Heart Failure in Adults: a report of the American

College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines:

developed in collaboration with the International Society for Heart and Lung Transplantation.

Circulation 2009; 119:e391.

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UTD-CP End of Life Heart Failure Patients