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Palliative care for patients with advanced heart failure: Decision support and management of symptoms

Palliative care for patients with advanced heart failure: Decision support and management of symptoms
Author:
Larry Allen, MD, MHS, FACC, FAHA, FHFSA
Section Editors:
Sharon A Hunt, MD
R Sean Morrison, MD
Deputy Editor:
Todd F Dardas, MD, MS
Literature review current through: Mar 2021. | This topic last updated: Dec 03, 2020.

INTRODUCTION — Despite advances in cardiac therapy, heart failure (HF) remains a progressive, highly symptomatic, and deadly disease that places great demands on patients, caregivers, clinicians, and health care systems. Palliative care is an interdisciplinary approach to care that focuses on improving quality of life for patients and families facing serious illness. Palliative care has a role across the stages of HF, starting early in the course of illness, intensifying in end-stage disease, and extending into caregiver bereavement.

Advance care planning, symptom management, and psychosocial support as components of palliative care for patients with advanced HF will be reviewed here. Estimation of prognosis and indications for palliative care are discussed separately (see "Palliative care for patients with advanced heart failure: Indications and systems of care"), as are general management of HF with reduced ejection fraction, HF with preserved ejection fraction, and HF with mid-range ejection fraction. (See "Overview of the management of heart failure with reduced ejection fraction in adults" and "Treatment and prognosis of heart failure with preserved ejection fraction" and "Treatment and prognosis of heart failure with mid-range ejection fraction".)

DECISION SUPPORT

Advance care directives and preparedness planning

Definitions and timing — Advance care planning for preference-sensitive decisions often arising at the end of life is an ongoing process in which patients, their families, and their health care providers discuss current and future health care choices in the context of what is medically reasonable [1]. The results of such discussions are typically recorded as an advance care directive, a document that appoints an agent and/or records the person's wishes about their medical treatment based on personal values and preferences, to be used at a future time if the individual is unable to speak for themselves. (See "Advance care planning and advance directives" and "Discussing goals of care".)

Given the somewhat unpredictable nature of HF, advance care planning should ideally begin early in the disease process. For patients with HF, advance care directives provide an avenue to express their wishes about a range of life-sustaining treatments, usually treatments to withhold or withdraw, in the event of a terminal condition [2]. For providers of HF care, advance care directives can help ensure medical decision making that aligns patient values with treatment choices, with improved quality of life and death. For patients, their families, and providers, regular discussions about prognosis can recalibrate expectations and ensure a proactive approach to the difficult decisions that invariably arise acutely in life-threatening situations. Patients tend to underestimate disease severity and may defer difficult discussions to the detriment of timely decision making [3]. In a longitudinal study of 608 United States HF patients, over half of the patients did not have an advance directive at the time of death [4]. A single-center study showed that involving a social worker who is charged with implementing the Serious Illness Care Program in the inpatient HF team increased the number of advance care directives and medical orders for life-sustaining preferences documented in the medical record, and improved patient-provider prognostic concordance [5].

Preparedness planning is a more comprehensive approach to end-stage illness, which includes earlier completion of advance care directives as one component. Advance care directives have traditionally focused on end-of-life care, while preparedness planning focuses on preparing for any adverse event. The focus of preparedness planning is specific to the individual patient's situation, and it focuses on respecting patients' beliefs and preferences [6]. Preparedness planning has been shown to improve attitudes and increase completion of advance care directives in patients with HF [7]. The concept of preparedness planning is often combined with a palliative care visit as the first step to the ultimate completion of advance care directives.

Although creation of advance care directives has sometimes been considered a one-time event, optimal advance care planning is iterative and is likely to evolve through the course of an undulating and progressive disease like HF. Choices regarding medical therapy made by patients with HF can and should change over time. As an example, a patient with progressive symptoms who initially requests all available therapy may later decide to forgo left ventricular assist device (LVAD) therapy and may later opt to avoid hospitalization while continuing to consent to less burdensome treatments.

A revisiting of advance care directives should occur at both regular intervals and major milestones or interventions (eg, prior to planned surgery). An "annual heart failure review" with the patient’s primary HF provider has been proposed [8]. The United States Centers for Medicare and Medicaid Services (CMS) updated the Medicare Physician Fee Schedule in 2016 to establish a separate payment for advance care planning services provided to Medicare beneficiaries by physicians and other practitioners [9]. The importance of revisiting advance care directives was highlighted by a study of 282 patients with New York Heart Association functional class III or IV HF who were interviewed every four months for up to two years to assess their preferences for end-of-life care [10]. Nearly two-thirds (64 percent) of patients changed their preferred type of end-of-life care at least once, and changes occurred in both directions (from aggressive to nonaggressive and from nonaggressive to aggressive).

Approach to discussions leading to advance care planning — The following are key steps for patients and clinicians to consider regarding advance care planning for patients with HF. These may occur as part of routine care (such as an annual visit) or prompted by major medical events [11,12]:

Characterize clinical status – Characterize functional ability, symptom burden, mental status, quality of life, and recent disease trajectory. Solicit perceptions from caregivers as well.

Estimate prognosis – Incorporate objective modeling data. Recognize uncertainty. (See "Palliative care for patients with advanced heart failure: Indications and systems of care", section on 'Estimating prognosis' and "Predictors of survival in heart failure with reduced ejection fraction", section on 'Predictive models'.)

Solicit patient values and beliefs – Identify major life goals. Elicit general care preferences. (See "Discussing goals of care".)

Review treatments – Evaluate which HF medications and devices are appropriate; review therapies for comorbidities, potential interactions, and side effects; and determine which preventive care is appropriate and which can be discontinued.

Consider options – Anticipate major treatment choices on the horizon.

Conduct preparedness planning – Document advance care directives, resuscitation preferences, preferences for and location of end-of-life care, and surrogate decision makers.

Finally, certain therapeutic options may be considered unreasonable or become impossible for an individual patient, and therefore are deemed inappropriate independent of patient preferences. For example, cardiopulmonary resuscitation may not be appropriate in a patient with progressive cardiogenic shock without a clearly reversible cause, for whom durable LVAD or transplantation is not an option. However, situations of medical futility are relatively rare [13]. (See "Ethics in the intensive care unit: Responding to requests for potentially inappropriate therapies in adults" and "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit".)

Decision support

Framework for discussing medical therapies — Patients with HF often face major treatment decisions over time, all of which have associated benefits and burdens. The following is a framework for discussing and thinking through the types of medical decisions that arise in treating HF:

Cardiac surgery (ie, valve repair or coronary bypass), percutaneous catheter intervention, or cardiac resynchronization therapy that may reduce HF symptoms over time but involve short-term procedural risk of morbidity and mortality.

Implantable cardioverter-defibrillator (ICD) therapy that reduces the risk of sudden death but does not improve HF symptoms.

Supportive therapies such as intravenous inotropic therapy, hemodialysis, pleural drains, and feeding tubes that are often initiated during an acute decompensation and may lead to dependence for an unanticipated duration of time. (See "Inotropic agents in heart failure with reduced ejection fraction".)

Treatments such as heart transplantation or mechanical cardiac assist devices (such as an LVAD) that exchange one disease for another and set patients on different life trajectories. (See "Heart transplantation in adults: Indications and contraindications" and "Intermediate- and long-term mechanical circulatory support".)

Noncardiac procedures (eg, hip replacement) and preventive measures (eg, colonoscopy or statin), for which benefits and risks should be reviewed in the context of competing risks from HF.

Discussions should include a range of anticipated outcomes, including not only survival but also major adverse events, quality of life, symptom burden, functional limitations, loss of independence, and obligations for caregivers. Major interventions should be presented with a balanced description of alternative approaches. Referral for specialty palliative care may be helpful for many of these difficult decisions. (See "Palliative care for patients with advanced heart failure: Indications and systems of care", section on 'Secondary (specialty) palliative care'.)

Patient decision-support tools designed to facilitate shared decision making and patient participation in health care decisions can be very helpful to convey critical information, elicit patient preferences, and encourage deliberation [14]. They are not substitutes for conversations with health care providers, but are tools to help frame the discussions and inform patients of their options. Various forms of decision aids are available, including pamphlets, videos, interactive web-based platforms, and books that address common medical decisions in HF, including ICD and LVAD implantation [15-17]. In recognition of the importance of shared decision making for certain decisions, in the United States, Medicare's National Coverage Determinations for primary prevention ICD [18] and for left atrial appendage closure [19] require a formal shared decision-making interaction with the use of a patient decision aid prior to implantation. A systematic review of tools used to promote shared decision making in critically ill patients showed that the use of decision aids improved knowledge and awareness of treatment choices [20].

Examples of complex treatment modalities — Decision support is particularly important for aiding shared decision making regarding complex treatment modalities such as use of ICDs and LVADs.

Implantable cardioverter-defibrillators — Decisions on ICD implantation should be grounded in patients' beliefs and wishes around their goals of care. ICDs can prevent death from a lethal arrhythmia, but do not improve cardiac function or reduce HF symptoms (unless cardiac resynchronization therapy with biventricular pacing is also indicated) and can add burden, particularly if the ICD discharges inappropriately. An ICD may also increase the likelihood of a prolonged death from pump failure or the risk of hospital admission [21]. The variable use of and perceptions of patients considering ICD therapy highlight the need for improved care and communication around this process [22]. Discussion of key palliative care issues such as relief of suffering and quality of life may play an important role in clarifying expectations and patient beliefs around ICD therapy. Guided by palliative care principles, the 2017 American College of Cardiology/American Heart Association guideline recommendation for implantation of an ICD recommends that a discussion occur with each patient about the risks, benefits, and alternatives of ICD therapy, and this discussion should be documented [23]. Quality measures and payment are based on documentation of a formal shared decision-making interaction prior to implantation. (See "Primary prevention of sudden cardiac death in patients with cardiomyopathy and heart failure with reduced LVEF" and "Secondary prevention of sudden cardiac death in heart failure and cardiomyopathy".)

Decisions around deactivation of ICDs can be even more complex than the decision to implant them [24]. (See "Management of cardiac implantable electronic devices in patients receiving palliative care", section on 'Indications for discontinuing CIED therapy'.)

Left ventricular assist devices — Increasing numbers of carefully selected patients with advanced HF are receiving LVAD therapy as a bridge to cardiac transplantation or as "destination" (ie, permanent) therapy for patients who are not candidates for transplantation. Deciding whether to proceed with LVAD implantation involves a complex assessment of the severity of HF, comorbidities, frailty, caregiver burden, and lifestyle changes [24,25]. For patients implanted with an LVAD as destination therapy, eventual death with the LVAD in place is expected from the time of implantation and yet is often particularly traumatic due to general unfamiliarity with the process of death with an LVAD [26,27]. Therefore, a discussion about discontinuing LVAD support should be part of the consent process prior to implantation. The 2013 International Society for Heart and Lung Transplantation guidelines for mechanical circulatory support include a recommendation to consult palliative care; the society specifies that goals and preferences for end of life should be discussed as part of this consultation [28]. The Joint Commission and CMS require LVAD centers to include a palliative care provider in the interdisciplinary team [29]. (See "Heart transplantation in adults: Indications and contraindications" and "Intermediate- and long-term mechanical circulatory support".)

SYMPTOM MANAGEMENT — Symptom management is a key component of palliative care for patients with HF. Meticulous management of HF therapies is a critical component of symptom palliation. Palliative care approaches, including integration of therapies for multimorbidity, may ameliorate refractory HF symptoms of dyspnea, fatigue, and pain and reduce resource use [30], although evidence is limited and study results have been mixed [31].

Dyspnea, fatigue, decreased exercise capacity, pain, depression, anxiety, insomnia, and worsened cognitive function are all commonly seen in patients with HF [32-35]. Most patients describe at least one symptom as burdensome [36]. Among patients with HF, physical symptom burden is the strongest predictor of health-related quality of life [37-39]. When HF nears end stage, it has one of the largest effects on quality of life of any advanced disease [40]. In a United States study of 60 symptomatic HF patients and 30 advanced lung or pancreatic cancer patients, advanced HF patients reported greater symptom burden and depression as well as lower spiritual wellbeing than those with advanced cancer [41].

Quantifying symptom burden and quality of life — Several tools to quantify symptoms and health status have been validated for use in HF patients. These include HF symptom measures (eg, Edmonton Symptom Assessment Scale [ESAS] [42] and Memorial Symptom Assessment Scale [MSAS] [43]), disease-specific health status measures (eg, Kansas City Cardiomyopathy Questionnaire [KCCQ] [44] and Minnesota Living with HF [MLWHF] [45]), and general health status measures (eg, EuroQual 5-Dimension [EQ-5D] [46]). While these patient-derived measures (as opposed to a clinician-determined measure like New York Heart Association [NYHA] functional class) are well validated and provide important information about patients' health-related quality of life [37,47], they have rarely been captured systematically in routine care. However, with advances in information technology and patient interfaces, such capture is improving rapidly. 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".)

Optimizing HF management — HF therapies (including pharmacologic therapy and cardiac resynchronization therapy, but not ICD therapy) are key components of symptom management, even after the presence of advanced HF has been established and the major goal is palliation rather than life prolongation. Regardless of etiology, cardiac dysfunction tends to cause reduced cardiac output that then prompts retention of sodium and water, leading to congestion. Thus, symptoms associated with HF should be addressed foremost by controlling volume status, removing exacerbating factors, and optimizing therapies that improve cardiac performance [48-50]. Symptoms generally are more severe with volume overload; however, they often persist in euvolemic states. In end-stage disease, when hypotension or renal dysfunction begin to dominate, reduction or withdrawal of renin-angiotensin-aldosterone system inhibitors and beta blockade are often indicated; at the same time, providers should avoid abandoning potentially life-saving therapies too early and should recognize that permanent withdrawal heralds a transition to Stage D disease [51]. (See "Management of refractory heart failure with reduced ejection fraction" and "Treatment of acute decompensated heart failure: General considerations".)

Palliative care interventions to control symptoms — Even with expert HF management, symptom relief is rarely complete. Eventually, the disease may become increasingly refractory to cardiac-focused therapies [51]. Therefore, palliative care-specific approaches have an important role in symptomatic HF. The basic principles, general evidence-based management strategies, and expected benefits of palliative care approaches to symptoms may aid the highly symptomatic and functionally limited HF population. Furthermore, HF rarely occurs in isolation, so that integrated approaches to care, which consider symptoms arising from multiple comorbidities, are applicable to most patients with HF. A palliative care specialist is not needed to prescribe many of the interventions; most primary care or cardiology clinicians, particularly with some training, can provide these services. (See "Overview of managing common non-pain symptoms in palliative care" and "Palliative care for patients with advanced heart failure: Indications and systems of care", section on 'Palliative care types and indications'.)

Comprehensive palliative approaches to symptom management in HF have been proposed, although high-quality studies have shown mixed results. Systematic reviews of studies that were conducted in multiple countries that included patients with HF as well as cancer, chronic obstructive pulmonary disease, HIV, and multiple sclerosis have found that use of expert home palliative care teams improved symptom control, quality of life, and patient satisfaction, reduced health care utilization, and increased the odds of dying at home [52,53]. The CASA randomized trial found that an intervention to improve symptoms and quality of life by integrating palliative and psychosocial care into chronic HF care had mixed results, improving depression and fatigue but not HF-specific health status and other symptoms [54]. Thus, general principles and clinical experience are used to alleviate symptoms.

Dyspnea — Dyspnea is a central symptom of HF. The general assessment and management of dyspnea in palliative care are discussed separately. (See "Assessment and management of dyspnea in palliative care".)

Opioids – For patients with dyspnea refractory to hemodynamic interventions (diuretics, afterload reduction, inotropes), international guidelines recommend the use of opioids [55-57]. Morphine improves exercise tolerance and/or exercise-related dyspnea in patients with HF [58-60]. In several small studies, treatment with opioids resulted in reduced dyspnea in patients with chronic stable HF [58], as well as advanced HF [60], although not all studies have been positive [61]. Generally, low doses of opioids are sufficient to achieve relief of dyspnea. In one study, approximately 40 percent of the patients responded to 10 mg oral morphine and approximately 20 percent responded to 20 or 30 mg oral morphine. As the response may increase over the first week of treatment, only cautious dose increases should occur within one week [62]. Laxatives should be administered along with opioids to prevent constipation. Renal function is impaired in advanced HF, so oxycodone may be preferred to morphine, as renally excreted active metabolites of morphine can cause adverse effects. Clinicians report fear of adverse respiratory effects [63] and addiction [64] as important barriers towards opioids prescription, despite studies showing limited evidence for significant adverse effects [57,65-68].

Benzodiazepines – Anxiolytics have also been recommended to treat dyspnea [55]; however, literature is conflicting about the effectiveness of anxiolytics for palliative treatment of dyspnea [69-71], and thus opioids should generally be considered before benzodiazepines. On the other hand, when dyspnea is accompanied by anxiety, treatment with anxiolytics can be considered with careful evaluation of effects and adverse effects. (See "Overview of anxiety in palliative care", section on 'Treatment approach'.)

Supplemental oxygen – Oxygen should be reserved for patients with documented hypoxia. Noninvasive nocturnal positive airway pressure has not been shown in randomized trials of ambulatory patients with HF to provide benefit, and thus should not be prescribed based solely for HF [72,73] or cardiovascular indication [74]. (See "Sleep-disordered breathing in heart failure", section on 'Management'.)

Exercise – Cardiac rehabilitation and other exercise training can reduce dyspnea and improve endurance and quality of life in patients with NYHA functional class II and III HF. Preliminary evidence suggests that inspiratory muscle training may improve exercise capacity in patients with chronic HF. 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 [75]. (See "Cardiac rehabilitation in patients with heart failure".)

Other nonpharmacologic management – Breathing training, using a fan to provide cool air to the face, and anxiety management may help [56].

Fatigue — Fatigue is a common complaint in patients with HF. It is clearly associated with both the psychological and physical condition of patients with HF [76]. Fatigue may be due to decreased cardiac output, elevated neurohormones, deconditioning, sleep impairment, and depression and/or anxiety. In chronic HF, selective thigh muscle strengthening improves fatigue [77]. (See "Overview of fatigue, weakness, and asthenia in palliative care".)

Pain — Pain is a common symptom in patients with chronic HF, with prevalence rising to 40 to 75 percent among persons with advanced HF [34,35]. The most common site of pain in one study was legs below the knees; however, back, major joint, and chest pain are also common. Many patients have pain in more than one area of the body [33,35]. Clinicians should inquire about pain and develop strategies for management. Opioids can be used for pain as well as dyspnea (see 'Dyspnea' above). In the PAIN-HF study, opioids were the only class of medications to which patients reported reduced pain [35]. Arthritis may be one of the main sources of pain in older persons with HF, but a major class of treatment for arthritis, the nonsteroidal antiinflammatory drugs, are contraindicated in patients with significant HF because they can impair renal function and promote sodium and fluid retention, thus worsening symptoms of HF [78]. Local treatments such as heat or cold therapy and physical therapy should be considered in an interdisciplinary approach to pain management.

Nausea and cachexia — Nausea, anorexia, weight loss, and protein malnutrition are common features of advanced HF. In one study, almost one-half of patients with HF reported nausea during their last six months of life [79]. Causes include intestinal edema, hepatic congestion, acid-peptic disease, liver or kidney dysfunction, and medications (eg, digoxin) [80]. Treatment should include optimizing HF medical management. Antiemetics should be considered for vomiting. Lorazepam may be preferable in some HF patients, as most other antiemetics have the potential for prolongation of the QT interval; risks and benefits should be carefully weighed. Issues related to stopping nutrition and hydration at the end of life are discussed separately. (See "Assessment and management of nausea and vomiting in palliative care" and "Stopping nutrition and hydration at the end of life".)

PSYCHOSOCIAL SUPPORT — The impact of HF on quality of life for both the patient and family is complex and extends beyond physical symptoms [81]. Psychosocial issues are also important considerations in patients being considered for transplantation and long-term mechanical circulatory support [82]. (See "Psychosocial issues in advanced illness".)

Management of depression — Patients with HF are at high risk for depression, but limited data are available to guide therapy in this clinical setting. Depression in symptomatic HF has an estimated prevalence of 20 to 40 percent and is associated with worse clinical outcomes [83,84]. The first step is to identify depression and treat contributing factors, including pain and dyspnea. Unfortunately, limited data are available on pharmacologic, cognitive, and exercise therapy for depression in HF patients.

The SADHART-CHF trial of 469 patients found no significant difference in depression or cardiovascular status in those treated with sertraline compared with placebo [85]. The MOOD-HF trial comparing escitalopram with placebo in 372 patients was similarly negative [86].

In the Depression and Self-Care of Heart Failure trial of 158 HF patients, cognitive behavioral therapy plus usual care was compared with usual care alone. The primary outcome was the Beck Depression Inventory at six months and the Self-Care of HF Index Confidence and Maintenance subscales were coprimary outcomes. Cognitive behavioral therapy was administered by two masters-level and two doctoral-level therapists. Cognitive behavioral therapy was effective in the treatment of depression for patients with HF compared with usual care (mean [SD] Beck Depression Inventory score 12.8 [10.6] versus 17.3 [10.7]), but did not influence self-care [87].

Despite these negative data, many clinicians continue to try pharmacologic therapy with selective serotonin reuptake inhibitors (SSRIs), psychostimulants such as methylphenidate, or tricyclic antidepressants such as nortriptyline (which has less significant anticholinergic effects, such as orthostatic hypotension, than other tricyclics) [88]. Medication side effects to be monitored include QT prolongation with tricyclic antidepressants and hyponatremia (particularly in older patients) with SSRIs [89]. (See "Assessment and management of depression in palliative care" and "Unipolar major depression in adults: Choosing initial treatment".)

Psychological, spiritual, and social support — The loss of physical and social function is significant in patients with HF. Patients with HF may be frightened and worried about disability, burdening their families, and dying, and may experience hopelessness, isolation, and uncertainty regarding their course [90,91]. Approaches to spiritual issues and anticipatory grief, such as those used in other advanced illnesses, are appropriate in HF [81,92]. At minimum, clinicians should screen for spiritual concerns and sources of support [93] and acknowledge patients' losses and sources of grief. (See "Overview of spirituality in palliative care" and "Influence of spirituality and religiousness on outcomes in palliative care patients".)

Most patients with HF rely on the social support of family and friends for aid with various aspects of HF care (including symptom monitoring, diet, medication and device management, care coordination, transportation, communication with caregivers, and emotional decision support) and these caregivers are at risk for distress and low quality of life [8,94,95]. The role of social support is discussed separately. (See "Heart failure self-management", section on 'Social support' and "Office-based assessment of the older adult" and "Office-based assessment of the older adult", section on 'Social and environmental assessment'.)

Caregiver burden is discussed below. (See 'Caregiver burden and support for caregivers' below.)

MANAGEMENT OF THE END OF LIFE — End-of-life care refers to the processes of addressing the medical, social, emotional, and spiritual needs of patients who are nearing death. It may include a range of medical and social services, including hospice care [96]. Management of the end of life for patients with HF includes addressing and readdressing patient decisions about treatment (including intravenous inotropes, ICDs, and mechanical circulatory support), and making decisions about the location of death, home services, and hospice care.

Patient decisions about treatment, including hospitalization versus hospice, resuscitation, and ICD use (see 'Deactivation of ICD' below), should be readdressed throughout the course of care because decisions may change over time [97]. In the SUPPORT study, 23 percent of patients hospitalized with HF preferred not to be resuscitated, and 19 percent of patients changed their resuscitation preferences over a two-month period [98]. (See "Palliative care: The last hours and days of life" and "Palliative care and hospice outside of the United States" and "Hospice: Philosophy of care and appropriate utilization in the United States".)

Some patients will prefer to try to live as long as possible. In this situation, a "hope for the best, plan for the worst" dichotomy may be helpful to allow the patient to attend to affairs and identify conditions under which the patient 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 patient's and family's preference for the location of and approach to death (hospital, intensive care unit, or home with hospice care) for the future, or if things do not go as hoped.

Location of death, home services, and hospice — An important component of end-of-life care planning is to determine whether the patient and caregivers would be most comfortable spending their last days to weeks at home or in a hospital setting (see "Palliative care delivery in the home" and "Palliative care: Nursing home"). However, home care may not be an option for some patients who become reliant on therapies that can only be provided in the hospital setting (eg, high-dose inotropes, temporary mechanical circulatory support, continuous renal replacement therapy). Hospices generally provide appropriate oral medications for HF, including management of fluid status, to maximize quality of life as patients approach death. Fewer hospices provide more complex treatments, such as intravenous inotrope infusion [99]. Ideally, clinicians should continue to participate in patient management after the patient enrolls in hospice. Hospice use is substantially lower in HF patients than in those with advanced cancer [100]; however, use of hospice for HF 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 [101], and later data from the United States Centers for Disease Control and Prevention show that these trends have continued for patients with cardiovascular disease [102]. In 2016, home passed hospital as the most common location of death in the United States, although cardiovascular deaths had lower odds of home death compared with cancer deaths (odds ratio 0.73) [103].

DECISION MAKING REGARDING ADVANCED THERAPIES — At the end of life, decisions are made regarding the continued use or withdrawal of advanced therapies such as intravenous inotropes, ICDs, and mechanical circulatory support.

Use or withdrawal of intravenous inotropes — Continuous infusion of dobutamine or milrinone may provide palliation in a small subset of patients with end-stage HF with systolic dysfunction [104]. Beta blockers are typically withdrawn before inotropes are initiated [105]. (See "Management of refractory heart failure with reduced ejection fraction" and "Inotropic agents in heart failure with reduced ejection fraction".)

Generally, once initiated as a palliative therapy, continuous inotropes are continued through the end of life or until there is a major change in treatment approach. In a single-center study of 197 patients discharged on intravenous inotropic support (85 percent milrinone, 15 percent dobutamine) over a mean follow-up on inotrope of 3 to 12 months, 68 patients had died, 24 were weaned off inotropes, 23 were transplanted, 32 received left ventricular assist devices, and 50 remained on inotropes [106]. Seventeen percent experienced ICD shocks, highlighting that tachyarrhythmias may limit continuation in some patients, and discontinuation of ICD therapies should be considered in these patients. Conversion to hospice care may include discontinuation of inotropic support consistent with goals of care and due to financial considerations [107]. (See "Inotropic agents in heart failure with reduced ejection fraction" and "Management of refractory heart failure with reduced ejection fraction", section on 'Intravenous inotropes'.)

Deactivation of ICD — Decisions around deactivation of cardiac devices are often more complex than the decision to implant them [108]. Studies show that most patients with ICDs do not understand how they work or that there is an option to deactivate them [109]. Furthermore, providers rarely discuss ICD deactivation [110,111]. The result is that ICDs remain active until (and often during) death; disturbingly, this even happens to patients in hospice [112,113].

Turning off the defibrillator function should be presented as a simple step that may be consistent with the goal of preserving quality of life during the dying process. Except in the presence of recurrent ventricular tachycardia (ventricular tachycardia storm), deactivating the ICD shocking function does not cause any immediate noticeable change for the patient. The ICD shocking function is deactivated by reprogramming the device. A sample ICD deactivation policy including ethical rationale, process of informed consent, and process for deactivation has been proposed [112]. A palliative care consultation can help clarify the goals of care [114]. A decision to deactivate any accompanying pacemaker function should be made separately, as this involves consideration of the indications for pacemaker therapy. Emergency 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 antitachycardia pacing or shocks. (See "Management of cardiac implantable electronic devices in patients receiving palliative care".)

Withdrawal of mechanical circulatory support — Discussions around discontinuation of mechanical circulatory support at end of life are especially complicated [108,115]. Although the legal construct of patient autonomy does not recognize different degrees of dependence on therapies to be withdrawn, individuals may have difficulty accepting discontinuation of therapy that leads to direct patient demise, and some providers view it as an act of euthanasia [116]. Iterative discussions around device deactivation, starting before implantation, are essential to decrease confusion for providers, patients, and their families. Device deactivation can be done in the hospital or at home, attended by a device-trained individual and others as requested (hospice nurse, chaplain, etc). Discontinuation of power to valveless continuous-flow devices typically results in an immediate and marked reduction in systemic blood flow, with deaths occurring in less than 20 minutes [117]. This clinical scenario has been likened to withdrawal of endotracheal intubation and ventilatory support, although patients on mechanical circulatory support are more likely to be fully awake and alert at the time of decision to discontinue support. Data are lacking on the best way to involve palliative care in the treatment of these patients, but an algorithm has been proposed [118], and palliative care specialists often play a key role at the time of deactivation [119].

CAREGIVER BURDEN AND SUPPORT FOR CAREGIVERS — Although most family and friends are appreciative of the opportunity to help their loved ones with HF, informal caregivers report schedule burden (ie, disruption of daily tasks), financial burden, and family burden [120]. The costs of informal caregiving for patients with cardiovascular disease were estimated to be USD $61 billion in 2015 and are projected to increase to USD $128 billion in 2035, representing an additional 11 percent of medical and productivity costs attributable to cardiovascular disease [121]. As patients approach the end of life, these burdens increase [122]. Health status and emotional well-being of family caregivers can be impaired [8,94,95,123]. (See "Heart failure self-management", section on 'Social support'.)

Limited data are available on interventions to support caregivers. The ENABLE CHF-PC trial randomly assigned 158 family caregivers to an intervention (four weekly psychosocial and problem-solving support telephonic sessions with a nurse coach plus monthly follow-up for 48 weeks) or usual care [124]. Most of the caregivers were not distressed at baseline. No improvement in caregiver quality of life, mood, or burden was observed with the intervention compared with usual care over 16 weeks. Issues for future research include the effects of interventions on distressed caregivers and associated patient outcomes.

High-quality palliative care also includes bereavement support. (See "Complicated grief in adults: Epidemiology, clinical features, assessment, and diagnosis", section on 'Clinical features' and "Palliative care delivery in the home", section on 'Burden of caregiving'.)

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care" and "Society guideline links: Heart failure in adults".)

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 education: Medical care during advanced illness (The Basics)" and "Patient education: Advance directives (The Basics)")

SUMMARY AND RECOMMENDATIONS

Advance care planning for preference-sensitive decisions is an ongoing process in which patients, their families, and their health care providers discuss current and future health care choices in the context of what is medically reasonable. Given the somewhat unpredictable nature of heart failure (HF), advance care planning should ideally begin early in the disease process. (See 'Definitions and timing' above.)

Discussion between patients and clinicians leading to preparedness planning should address clinical status, estimates of prognosis, patient values and beliefs, appropriate treatments, and anticipated treatment options. Preparedness planning includes documentation of advance care directives, resuscitation preferences, preferences for and location of end-of-life care, and surrogate decision makers. (See 'Approach to discussions leading to advance care planning' above.)

Patients with HF often face major treatment decisions over time and should be provided with support in thinking through the benefits and burdens of each treatment option. Decision-support tools can be very helpful to help frame discussions and inform patients of their options but are not substitutes for conversations with health care providers. (See 'Decision support' above.)

Decision support is particularly important for aiding shared decision making regarding complex treatment modalities such as use of implantable cardioverter-defibrillators (ICDs) and left ventricular assist devices. (See 'Examples of complex treatment modalities' above.)

Symptom management is a key component of palliative care for patients with HF. Meticulous management of HF therapies is a critical component of symptom palliation. Palliative care approaches, including integration of therapies for multiple comorbidities, may ameliorate refractory HF symptoms of dyspnea, fatigue, and pain, although study results have been mixed. (See 'Symptom management' above.)

Patients with HF are at high risk for depression, but limited data are available to guide therapy in this clinical setting. (See 'Management of depression' above.)

End-of-life care refers to the processes of addressing the medical, social, emotional, and spiritual needs of patients who are nearing death. Management of the end of life for patients with HF includes addressing and readdressing patient decisions about treatment (including intravenous inotropes, ICDs, and mechanical circulatory support), and making decisions about the location of death, home services, and hospice care. (See 'Management of the end of life' above.)

ACKNOWLEDGMENT — The UpToDate editorial staff would like to thank Sarah J Goodlin, MD, FACC, FAAHPM, who contributed to earlier versions of this topic review.

REFERENCES

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Topic 110747 Version 13.0

References

1 : A randomised controlled trial on the efficacy of advance care planning on the quality of end-of-life care and communication in patients with COPD: the research protocol.

2 : The evolution of health care advance planning law and policy.

3 : Palliative and end-of-life care for patients with severe COPD.

4 : Advance directives in community patients with heart failure.

5 : Social Worker-Aided Palliative Care Intervention in High-risk Patients With Heart Failure (SWAP-HF): A Pilot Randomized Clinical Trial.

6 : Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy.

7 : Does preparedness planning improve attitudes and completion of advance directives in patients with symptomatic heart failure?

8 : Decision making in advanced heart failure: a scientific statement from the American Heart Association.

9 : Decision making in advanced heart failure: a scientific statement from the American Heart Association.

10 : Instability in End-of-Life Care Preference Among Heart Failure Patients: Secondary Analysis of a Randomized Controlled Trial in Singapore.

11 : Burden of Transitions After Invasive Mechanical Ventilation for U.S. Individuals with Severe Chronic Obstructive Pulmonary Disease: Opportunity to Prepare for Preference-Congruent End-of-Life Care?

12 : Patients' perspectives on physician skill in end-of-life care: differences between patients with COPD, cancer, and AIDS.

13 : Defining Medical Futility and Improving Medical Care.

14 : Decision aids for people facing health treatment or screening decisions.

15 : Effectiveness of an Intervention Supporting Shared Decision Making for Destination Therapy Left Ventricular Assist Device: The DECIDE-LVAD Randomized Clinical Trial.

16 : Effectiveness of an Intervention Supporting Shared Decision Making for Destination Therapy Left Ventricular Assist Device: The DECIDE-LVAD Randomized Clinical Trial.

17 : Effectiveness of an Intervention Supporting Shared Decision Making for Destination Therapy Left Ventricular Assist Device: The DECIDE-LVAD Randomized Clinical Trial.

18 : Effectiveness of an Intervention Supporting Shared Decision Making for Destination Therapy Left Ventricular Assist Device: The DECIDE-LVAD Randomized Clinical Trial.

19 : Effectiveness of an Intervention Supporting Shared Decision Making for Destination Therapy Left Ventricular Assist Device: The DECIDE-LVAD Randomized Clinical Trial.

20 : Tools to Promote Shared Decision Making in Serious Illness: A Systematic Review.

21 : Impact of implantable cardioverter defibrillators on survival and recurrent hospitalization in advanced heart failure.

22 : Patient and cardiologist perceptions on decision making for implantable cardioverter-defibrillators: a qualitative study.

23 : 2017 AHA/ACC/HRS Guideline for Management of Patients With Ventricular Arrhythmias and the Prevention of Sudden Cardiac Death: A Report of the American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines and the Heart Rhythm Society.

24 : Decision making for destination therapy left ventricular assist devices: "there was no choice" versus "I thought about it an awful lot".

25 : Decision-making for destination therapy left ventricular assist devices: implications for caregivers.

26 : Deactivation of Left Ventricular Assist Devices: Differing Perspectives of Cardiology and Hospice/Palliative Medicine Clinicians.

27 : Caregiver Perspectives on End-of-Life Experiences of Patients With Left Ventricular Assist Devices-Reply.

28 : The 2013 International Society for Heart and Lung Transplantation Guidelines for mechanical circulatory support: executive summary.

29 : The 2013 International Society for Heart and Lung Transplantation Guidelines for mechanical circulatory support: executive summary.

30 : Economics of Palliative Care for Hospitalized Adults With Serious Illness: A Meta-analysis.

31 : Palliative Care in Heart Failure: Rationale, Evidence, and Future Priorities.

32 : Quality of life in patients with advanced heart failure.

33 : Demographics and concomitant disorders in heart failure.

34 : The burden of symptoms among community-dwelling older persons with advanced chronic disease.

35 : Investigating pain in heart failure patients: the pain assessment, incidence, and nature in heart failure (PAIN-HF) study.

36 : Outpatient palliative care for chronic heart failure: a case series.

37 : Cardiovascular health: the importance of measuring patient-reported health status: a scientific statement from the American Heart Association.

38 : Predictors and effect of physical symptom status on health-related quality of life in patients with heart failure.

39 : Quality of life in patients with chronic heart failure and their carers: a 3-year follow-up study assessing hospitalization and mortality.

40 : Symptoms, depression, and quality of life in patients with heart failure.

41 : Symptom burden, depression, and spiritual well-being: a comparison of heart failure and advanced cancer patients.

42 : The correlation of standard heart failure assessment and palliative care questionnaires in a multidisciplinary heart failure clinic.

43 : Impact of symptom prevalence and symptom burden on quality of life in patients with heart failure.

44 : Development and evaluation of the Kansas City Cardiomyopathy Questionnaire: a new health status measure for heart failure.

45 : Assessment of patient outcome with the Minnesota Living with Heart Failure questionnaire: reliability and validity during a randomized, double-blind, placebo-controlled trial of pimobendan. Pimobendan Multicenter Research Group.

46 : EuroQol: the current state of play.

47 : Utility of Patient-Reported Outcome Instruments in Heart Failure.

48 : 2016 ACC/AHA/HFSA Focused Update on New Pharmacological Therapy for Heart Failure: An Update of the 2013 ACCF/AHA Guideline for the Management of Heart Failure: A Report of the American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines and the Heart Failure Society of America.

49 : 2016 ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure: The Task Force for the diagnosis and treatment of acute and chronic heart failure of the European Society of Cardiology (ESC). Developed with the special contribution of the Heart Failure Association (HFA) of the ESC.

50 : 2017 ACC Expert Consensus Decision Pathway for Optimization of Heart Failure Treatment: Answers to 10 Pivotal Issues About Heart Failure With Reduced Ejection Fraction: A Report of the American College of Cardiology Task Force on Expert Consensus Decision Pathways.

51 : Advanced (stage D) heart failure: a statement from the Heart Failure Society of America Guidelines Committee.

52 : Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers.

53 : Moving upstream: a review of the evidence of the impact of outpatient palliative care.

54 : Feasibility and acceptability of a collaborative care intervention to improve symptoms and quality of life in chronic heart failure: mixed methods pilot trial.

55 : Patient-clinician communication about end-of-life care topics: is anyone talking to patients with chronic obstructive pulmonary disease?

56 : Caring for a person in advanced illness and suffering from breathlessness at home: threats and resources.

57 : An official American Thoracic Society statement: update on the mechanisms, assessment, and management of dyspnea.

58 : Effects of dihydrocodeine on chemosensitivity and exercise tolerance in patients with chronic heart failure.

59 : Safety and potential benefits of low dose diamorphine during exercise in patients with chronic heart failure.

60 : Morphine for the relief of breathlessness in patients with chronic heart failure--a pilot study.

61 : Short-term opioids for breathlessness in stable chronic heart failure: a randomized controlled trial.

62 : Effects of opioids on breathlessness and exercise capacity in chronic obstructive pulmonary disease. A systematic review.

63 : Differences in health care utilization at the end of life among patients with chronic obstructive pulmonary disease and patients with lung cancer.

64 : Reducing the Risks of Relief--The CDC Opioid-Prescribing Guideline.

65 : Attitudes toward opioids for refractory dyspnea in COPD among Dutch chest physicians.

66 : Symptomatic therapy of dyspnea with strong opioids and its effect on ventilation in palliative care patients.

67 : Effect of hydromorphone on ventilation in palliative care patients with dyspnea.

68 : Use of oxygen and opioids in the palliation of dyspnoea in hypoxic and non-hypoxic palliative care patients: a prospective study.

69 : Safety of benzodiazepines and opioids in very severe respiratory disease: national prospective study.

70 : Benzodiazepines for the relief of breathlessness in advanced malignant and non-malignant diseases in adults.

71 : Morphine versus midazolam as upfront therapy to control dyspnea perception in cancer patients while its underlying cause is sought or treated.

72 : Continuous positive airway pressure for central sleep apnea and heart failure.

73 : Adaptive Servo-Ventilation for Central Sleep Apnea in Systolic Heart Failure.

74 : CPAP for Prevention of Cardiovascular Events in Obstructive Sleep Apnea.

75 : Selective low-level leg muscle training alleviates dyspnea in patients with heart failure.

76 : Correlates of fatigue in patients with heart failure.

77 : Improvement of thigh muscles by neuromuscular electrical stimulation in patients with refractory heart failure: a single-blind, randomized, controlled trial.

78 : Non-steroidal anti-inflammatory drugs and risk of heart failure in four European countries: nested case-control study.

79 : Symptoms experienced in the last six months of life in patients with end-stage heart failure.

80 : Perceived medication adverse effects and coping strategies reported by chronic heart failure patients.

81 : Perceived medication adverse effects and coping strategies reported by chronic heart failure patients.

82 : The 2018 ISHLT/APM/AST/ICCAC/STSW recommendations for the psychosocial evaluation of adult cardiothoracic transplant candidates and candidates for long-term mechanical circulatory support.

83 : Depression and health status in patients with advanced heart failure: a prospective study in tertiary care.

84 : Clinical depression is common and significantly associated with reduced survival in patients with non-ischaemic heart failure.

85 : Safety and efficacy of sertraline for depression in patients with heart failure: results of the SADHART-CHF (Sertraline Against Depression and Heart Disease in Chronic Heart Failure) trial.

86 : Effect of Escitalopram on All-Cause Mortality and Hospitalization in Patients With Heart Failure and Depression: The MOOD-HF Randomized Clinical Trial.

87 : Cognitive Behavior Therapy for Depression and Self-Care in Heart Failure Patients: A Randomized Clinical Trial.

88 : Cognitive Behavior Therapy for Depression and Self-Care in Heart Failure Patients: A Randomized Clinical Trial.

89 : Hyponatraemia and selective serotonin re-uptake inhibitors in elderly patients.

90 : Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers.

91 : Removing the boundaries: palliative care for patients with heart failure.

92 : Removing the boundaries: palliative care for patients with heart failure.

93 : Taking a spiritual history allows clinicians to understand patients more fully.

94 : Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review.

95 : 'The importance of planning for the future': Burden and unmet needs of caregivers' in advanced heart failure: A mixed methods study.

96 : Policy brief: the Institute of Medicine report Dying in America: Improving quality and honoring individual preferences near the end of life.

97 : HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy.

98 : Resuscitation preferences among patients with severe congestive heart failure: results from the SUPPORT project. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.

99 : Hospice care for heart failure patients.

100 : Hospice, opiates, and acute care service use among the elderly before death from heart failure or cancer.

101 : Resource use in the last 6 months of life among medicare beneficiaries with heart failure, 2000-2007.

102 : How Medicine Has Changed the End of Life for Patients With Cardiovascular Disease.

103 : Changes in the Place of Death in the United States.

104 : Care processes and clinical outcomes of continuous outpatient support with inotropes (COSI) in patients with refractory endstage heart failure.

105 : Milrinone versus dobutamine in heart failure subjects treated chronically with carvedilol.

106 : Clinical Characteristics and Outcomes of Intravenous Inotropic Therapy in Advanced Heart Failure.

107 : Availability of Heart Failure Medications in Hospice Care.

108 : Life-saving devices reach the end of life with heart failure.

109 : Patients' perception of implantable cardioverter defibrillator deactivation at the end of life.

110 : Deactivation of implantable cardioverter defibrillators in terminal illness and end of life care.

111 : Implantable cardioverter defibrillator (ICD) deactivation discussions: Reality versus recommendations.

112 : Brief communication: Management of implantable cardioverter-defibrillators in hospice: A nationwide survey.

113 : Implantable cardioverter defibrillator deactivation: a hospice quality improvement initiative.

114 : Palliative Care Consultation and Associated End-of-Life Care After Pacemaker or Implantable Cardioverter-Defibrillator Deactivation.

115 : How Should Physicians Respond to Requests for LVAD Removal?

116 : Clinicians' attitudes regarding withdrawal of left ventricular assist devices in patients approaching the end of life.

117 : End-of-life decision making and implementation in recipients of a destination left ventricular assist device.

118 : An interdisciplinary checklist for left ventricular assist device deactivation.

119 : Team-based Palliative and End-of-life Care for Heart Failure.

120 : Family Caregiving for Individuals With Heart Failure: A Scientific Statement From the American Heart Association.

121 : Projected Costs of Informal Caregiving for Cardiovascular Disease: 2015 to 2035: A Policy Statement From the American Heart Association.

122 : Burden in caregivers of older adults with advanced illness.

123 : Family caregiving in advanced chronic organ failure.

124 : Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure: The ENABLE CHF-PC Randomized Clinical Trial.