INTRODUCTION — Despite advances in cardiac therapy, heart failure remains a progressive, highly symptomatic, and deadly disease that places great demands on patients, caregivers, clinicians, and health care systems (figure 1). 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 heart failure, starting early in the course of illness, intensifying in end-stage disease, and extending into caregiver bereavement (figure 2).
Indications, estimation of prognosis, and strategies for palliative care in patients with advanced heart failure will be reviewed here. Advanced care planning, symptom management, and psychosocial support for patients with advanced heart failure and the general management of heart failure with reduced ejection fraction and heart failure with preserved ejection fraction are discussed separately. (See "Palliative care for patients with advanced heart failure: Decision support and management of symptoms" and "Treatment and prognosis of heart failure with preserved ejection fraction" and "Overview of the management of heart failure with reduced ejection fraction in adults".)
OBJECTIVES AND COMPONENTS — Palliative care is an interdisciplinary approach to care that focuses on improving quality of life for patients and their families. Objectives of palliative care include relieving pain and other distressing symptoms; integration of medical, psychological, and spiritual aspects of care; and offering a support system to help families cope during illness and bereavement. Greater integration of palliative care in the management of heart failure has the potential to facilitate coping with symptoms and uncertainty, to promote patient-centered care that bridges silos of care for coordinated management of comorbidities, to improve communication, and to assist shared decision making regarding use of life-saving devices with complex trade-offs.
PALLIATIVE CARE TYPES AND INDICATIONS — Because heart failure is a symptomatic disease with complex decision making and a relatively high risk for death throughout its course, palliative care should be integrated early and often into the care of these patients. However, certain palliative care approaches may have greater applicability at different points in the disease and the overall intensity of palliative care needs tends to increase over time. Multiple practice guidelines and scientific statements recommend the use of palliative care in patients with heart failure [1-11].
Palliative care for patients with heart failure includes primary palliative care provided by a range of healthcare providers, as well as secondary palliative care provided by palliative care specialists. The term "hospice" is used to describe a specific model of subspecialty palliative care that is offered to patients with a terminal disease who are at the end of life.
Primary palliative care — Supportive, palliative-type services should be incorporated into the practices of all clinicians caring for patients with heart failure (table 1) . Some term this "primary" palliative care to distinguish it from "secondary" or "subspecialty" palliative care . Just as the majority of heart failure care is provided by non-heart failure specialists, the majority of palliative care in heart failure must be provided by non-palliative care specialists. There are not enough palliative care specialists in practice to provide such services , and many of the palliative therapies that patients need are better integrated into existing care rather than fragmented into specialty silos. Primary palliative care includes the following: strategies for addressing dyspnea, pain, and fatigue; approaches to depression and anxiety; discussions around prognosis, goals of care, and shared decision making; and execution of advanced care directives. Clinicians caring for these patients need to attain competence in providing comprehensive supportive care. (See 'Education and training' below and 'Team-based palliative care' below and "Primary palliative care".)
Secondary (specialty) palliative care — While physicians caring for patients with heart failure are able to manage many palliative care needs, consultation with a palliative care specialist may be beneficial in certain situations (table 1).
Indications — We suggest referral for secondary palliative care for patients with heart failure with one or more of the following conditions or circumstances: persistent New York Heart Association (NYHA) functional class IV, significant comorbidities (eg, renal failure, oxygen-dependent chronic lung disease, dementia, or metastatic cancer , or progressive frailty), when facing medical decisions on major interventions (eg, left ventricular assist devices), or when patient preferences are shifting the emphasis of care to quality of life. Formal guidelines for secondary palliative care referral have not been established. Criteria for palliative care assessment at the time of admission to the hospital have been proposed (table 2). (See 'Disease course and prognosis' below.)
Certain clinical milestones may also trigger palliative care consultation. Specifically, patients considering left ventricular assist device (LVAD) are at high risk of stroke, bleeding, infection, and other complications that contribute to an average survival after implantation of less than five years . In 2013, the United States Joint Commission mandated that all accredited destination therapy (DT) LVAD programs include a palliative care specialist as part of the team . In parallel, an update to the national coverage determination for bridge-to-transplant and DT-LVADs from the Centers for Medicare and Medicaid Services required the interdisciplinary team to include a palliative care specialist .
Evidence — A growing body of evidence supports the inclusion of specialty palliative care into the management of patients diagnosed with a range of advanced diseases [18,19]. Palliative care needs in cardiovascular diseases are estimated to be the greatest of any disease. Some evidence is available on the impact of palliative care consultation services for patients with heart failure, as illustrated by the following examples:
The Palliative Care in Heart Failure (PAL-HF) trial was a randomized, controlled, unblinded, single-center study of an interdisciplinary palliative care intervention in 150 patients with advanced heart failure estimated to have a high likelihood of mortality or readmission. The six-month palliative care intervention focused on physical and psychosocial symptom relief, attention to spiritual concerns, and advanced care planning. Patients randomly assigned to palliative care plus usual care had significantly greater improvement in two quality-of-life measurements (the Kansas City Cardiomyopathy Questionnaire [KCCQ] difference = 9.49 points, 95% CI 0.94-18.05; the Functional Assessment of Chronic Illness Therapy-Palliative Care scale [FACIT-Pal] difference = 11.77 points, 95% CI 0.84-22.71) compared with the usual care alone group . The addition of palliative care also improved measures of depression, anxiety, and spiritual well-being compared with usual care alone.
The Social Worker-Aided Palliative Care Intervention in High-risk Patients With Heart Failure (SWAP-HF) trial randomized 50 patients to a focused, social worker-led palliative care intervention beginning in the hospital and continuing in the outpatient setting versus control . At six months, more patients in the intervention group had physician-level documentation of advanced care preferences in the electronic health record (65 versus 33 percent). Among the 31 who survived to six months, those allocated to intervention were more likely to revise their baseline estimate of prognosis in a direction consistent with the physician's assessment (94 versus 26 percent); there was no measured difference between groups in depression, anxiety, or quality-of-life scores.
Other studies of the impact of palliative care consultation not limited to patients with heart failure have yielded mixed results, as discussed separately. (See "Benefits, services, and models of subspecialty palliative care" and "Communication in the ICU: Holding a family meeting".)
These findings suggest that palliative care consultations likely need to be targeted and timely, inclusive of multiple components, and integrated into existing care in order to optimize benefit and minimize risk of harm.
Team-based palliative care — Palliative care for heart failure generally requires an interdisciplinary approach, including primary care, cardiology, and palliative care specialists, each represented by various providers (eg, physicians, advanced practitioners, nurses, case managers, pharmacists, and chaplains). While there is evidence suggesting that interdisciplinary care in heart failure can improve survival , integrating care across disciplines can be logistically challenging for providers and patients. A United Kingdom survey study found that just over half of palliative care physicians and nurses caring for heart failure patients reported some form of collaboration with cardiology providers . Lack of clear roles in the partnership between cardiology and palliative care can contribute to silos of care. Not surprisingly, both patients and family members report confusion over which providers are directly involved in a patient’s care.
Various specialties may take a more central role in coordination of patient care at different times in the disease span, often with transition of leadership from primary care to cardiology to palliative care. Shared ownership and collaboration around palliative care needs between primary care, cardiology, and palliative care can lead to improved communication and understanding of patients’ goals and better end-of-life experiences . In a United Kingdom survey, more than 80 percent of palliative care providers thought that goals of care were not discussed with patients by their cardiology providers before being referred for palliative care . One solution may be to appoint a member of the cardiology team to provide the link with palliative care. Several studies have reported effective collaborations involving a heart failure nurse, social worker, or case manager who liaises between the two teams [21,25-27].
Hospice — Hospice is a specific model of subspecialty palliative care that is offered to patients with a terminal disease who are at the end of life when curative or life-prolonging therapy is no longer the focus of treatment. The availability of palliative care and hospice services varies among countries. (See "Hospice: Philosophy of care and appropriate utilization in the United States" and "Palliative care and hospice outside of the United States".)
In the United States, hospice referral is largely determined by the Medicare hospice eligibility guidelines, which are divided into general and disease-specific types . Eligibility for hospice care typically requires that a physician estimate that life expectancy is six months or less, which can be problematic. (See 'Disease course and prognosis' below.) The Centers for Medicare & Medicaid Services guidance notes that a patient will be considered to be in a terminal stage of heart disease (life expectancy of six months or less) if they meet the following criteria (criteria 1 and 2 are required; factors from criterion 3 will serve as supporting documentation) (table 3) :
●At the time of initial certification or recertification for hospice, the patient has received optimum treatment for heart disease (ie, optimum treatment to the extent tolerated), the patient is not a candidate for surgical procedures, or the patient declines those procedures.
●Patients with heart failure or angina have NYHA class IV functional status (eg, symptoms of heart failure or angina at rest and increased discomfort with any physical activity).
●Documentation of the following factors supports but is not required to establish eligibility for hospice care: treatment-resistant symptomatic supraventricular or ventricular arrhythmias, history of cardiac arrest or resuscitation, history of unexplained syncope, brain embolism of cardiac origin, or concomitant HIV disease.
Palliative care settings and location of death — Provision of secondary palliative care can occur in almost any setting, including private residences, assisted living facilities, rehabilitation, skilled and intermediate care facilities, acute and long-term care hospitals, clinics, hospice residences, correctional facilities, and homeless shelters . The majority of specialty palliative care consultations in the United States tend to occur in the hospital, but ambulatory palliative care is growing, either stand-alone or integrated into oncology and even cardiology clinics . Hospice care in the United States is most commonly provided in the home, with some variation in services by location . With these trends, in 2016, home passed hospital as the most common location of deaths from all natural causes in the United States . (See "Palliative care: The last hours and days of life", section on 'Place of death'.)
Centers for Disease Control data on location of death in the United States from 2003 to 2017 show that the proportion of cardiovascular deaths related to heart failure occurring in hospice facilities rose from 0.2 to 8.2 percent and the proportion at home rose from 20.6 to 30.7 percent, whereas the proportion of these deaths occurring in medical facilities decreased from 44.5 to 31.0 percent and in nursing homes decreased from 30.8 to 25.7 percent .
CHALLENGES IN PROVIDING PALLIATIVE CARE FOR HEART FAILURE
Evidence of underutilization — Despite the potential benefits of palliative care for people with heart failure, the application of palliative care to the heart failure patient population has been suboptimal [35,36]. A survey study from the United Kingdom reported that 47 percent of palliative care providers received less than 10 referrals for heart failure patients annually . In the United States, cancer has been the leading primary diagnosis for hospice referral, but in 2016, cardiac and circulatory diseases had grown to 18.7 percent of referrals, making it the second most common reason .
Barriers to palliative care — Barriers to provision of palliative care in patients with heart failure include limited evidence-based indications for palliative care, lack of provider and patient understanding about who can benefit from palliative care (eg, all patients with heart failure, not only those with terminal disease) and what palliative care can offer, uncertainty about patient prognosis, and limited provider education and training on how to discuss and implement palliative care.
A key cause of ineffective collaboration on palliative care is lack of knowledge. A qualitative survey study of 18 cardiology and primary care providers found that many did not know the differences between palliative care and hospice, including the eligibility criteria for these services . In a multisite survey of 95 cardiology and primary care physicians, nurse practitioners, and physician assistants, almost one-third reported a low or very low level of confidence in initiating prognosis or end-of-life discussions, enrolling patients in hospice, or providing end-of-life care . To help bridge this gap, there is a need for more education of providers and patients on the roles and functions of palliative care, which may promote greater general acceptance of palliative care. (See 'Education and training' below.)
DISEASE COURSE AND PROGNOSIS — Heart failure tends to be a disease with high symptom burden and periods of decompensation often requiring hospitalization, with high levels of prognostic uncertainty. Although survival in stable ambulatory patients is relatively good , once a person has been hospitalized with heart failure, the median life expectancy is less than five years .
Stages of heart failure — The American College of Cardiology/American Heart Association stages of heart failure describe a one-way continuum of disease : (See "Determining the etiology and severity of heart failure or cardiomyopathy".)
●Stage A (at risk) – At high risk for heart failure but currently without structural heart disease or symptoms of heart failure (eg, patients with hypertension or genetic predisposition).
●Stage B (asymptomatic) – Structural and functional manifestations of heart disease that can be detected but are not associated with any symptoms or limitation of physical activity.
●Stage C (symptomatic) – Structural heart disease with associated prior or current heart failure symptoms (most often dyspnea, fatigue, and edema). Symptom severity is most often graded by New York Heart Association (NYHA) functional status (with Stage C including class I through III) (table 4).
●Stage D (end-stage) – Refractory heart failure requiring specialized therapy. Patients with stage D disease have NYHA functional class IV symptoms. In this stage, eventually dysfunction becomes severe enough that available therapies fail to provide stability and patients succumb to their disease or are candidates (in some cases) for advanced therapy with mechanical support or transplantation.
Once patients develop chronic symptomatic heart failure, the disease often dominates their overall health and medical care. Most contemporary data from developed nations indicate that the prevalence of symptomatic heart failure is increasing (in the United States, from 5.8 million in 2010 to more than 8 million by 2030)  despite a plateau in its incidence , suggesting that patients are living longer with symptomatic disease.
Importance of prognosis — Predicting future events and anticipating the transition to end-stage disease is important for planning and shared decision making. (See "Communication of prognosis in palliative care".) For example, hospice eligibility relies on a physician’s certification "that the patient’s life expectancy is six months or less" . Given the difficulty of predicting life expectancy, regulators have provided specific guidance based upon clinical criteria to satisfy the life expectancy requirement for hospice in various clinical settings, but these may not mirror individual patient outcomes. (See 'Hospice' above.)
Challenges to accurate prognostication — Challenges to accurate prognostication include variation in prognosis among patients with heart failure, the presence of comorbidities in addition to heart failure, undulation in heart failure disease course, and varied modes of death.
●Variation in prognosis – While the orderly heart failure stages A through D are helpful for conceptualizing the progression of disease, the actual trajectory of heart failure within individual patients is variable and characterized by considerable uncertainty. The median time from onset of symptomatic disease to death has a wide range. Nearly 10 percent of patients are dead within a month of a hospitalization, and yet some patients will live for decades .
●Comorbidity – The frequent co-occurrence of heart failure with advanced age, multiple comorbidities, and frailty impacts the variability of its course. Half of the more than one million patients hospitalized with heart failure in the United States are over 78 years of age , and the greatest increases in disease prevalence are projected to occur in those over 85 years of age . The average patient has four or more diagnoses in addition to heart failure . Multiple comorbidities amplify symptoms, complicate management, alter prognosis, and contribute to polypharmacy. The average patient with heart failure takes 6.8 prescription medications per day, resulting in 10.1 doses a day . Frailty is more prevalent in people with heart failure than in the general elderly population [48,49]. These overlaying factors have obvious implications for prognosis and palliative care needs.
●Undulating disease – For patients who appear to have advanced heart failure, the challenge is distinguishing when adjustments to medications, alternative treatments, or improved lifestyle might improve function versus when end-stage disease is truly present . Patients with heart failure may have dramatic worsening and then impressive recovery with medical therapy or surgical interventions. Conversely, even very late in the disease, patients often enjoy "good days" and interludes of apparent stability, which can complicate end-of-life medical decision making. This contrasts with the more linear decline of most patients with advanced metastatic cancer, which has traditionally been the model for decision making and palliative care in end-stage disease.
●Contrasting modes of death – Heart failure can cause both unexpected sudden death (ie, lethal arrhythmia) and lingering death with congestive symptoms (ie, progressive pump failure), which demand different considerations and planning. Fortunately, rates of sudden death have decreased; unfortunately, this means that most patients with symptomatic heart failure will die of progressive pump failure marked by episodes of acute decompensation with severe symptoms preceding death . For patients with heart failure and preserved ejection fraction, noncardiac causes of death are even more common [52,53].
When to assess prognosis — Assessment of prognosis should typically occur at least annually and following major clinical events or changes in therapy. (See "Predictors of survival in heart failure with reduced ejection fraction", section on 'Predictive models' and "Management of refractory heart failure with reduced ejection fraction".)
Although heart failure tends to be a progressive disease, its clinical course often includes critical changes and events. These "milestones" can herald an "inflection point" in the overall trajectory that warrants additional attention and a reappraisal of goals of care . Recurrent hospitalizations are key milestone events. Once the acute condition has been addressed, such events should trigger a reassessment of prognosis, treatment options, and patient preferences.
Recommended use — We recommend the combined use of objective risk models (as recommended in guidelines ) with clinical gestalt. Clinicians can leverage objective risk models to minimize their own biases, while recognizing risk model limitations and uncertainties. For example, the Seattle Heart Failure Model (SHFM)  and Meta-Analysis Global Group in Chronic Heart Failure (MAGGIC) risk calculator  are well-validated, increasingly used, and available online (https://depts.washington.edu/shfm/ and http://www.heartfailurerisk.org). (See "Predictors of survival in heart failure with reduced ejection fraction" and "Predictors of survival in heart failure with reduced ejection fraction", section on 'Predictive models'.)
Evidence suggests that clinical estimates of risk of rehospitalization and death have limited accuracy and are subject to biases. For patients discharged from the hospital with advanced heart failure, both physicians and nurses had modest ability to discriminate those who subsequently died from those who lived (with nurses outperforming physicians), with absolute estimates generally over-estimating survival . In patients with chronic heart failure, patient self-predictions also tended to overestimate survival versus model-based predictions and actual survival, particularly for younger patients . We therefore recommend the use of objective risk models along with clinical gestalt.
Limitations — Yet, the application of population risk data to individual treatment decisions is problematic [58,59]:
●Population-based risk is not the same as individual risk – Risk prediction models represent averages, which are much more helpful for population management than for individual patient decisions. The probability that model prediction has a greater than twofold error remains near 50 percent for most survival models [60,61]. For example, if a patient died 12 months from the time a model was used to estimate survival time, the model would have predicted median survival of >24 months or <6 months more than half the time. It is therefore vital to acknowledge and incorporate uncertainty in discussions about future care.
As an example, a study of 10,930 ambulatory patients with heart failure examined differences between population-based and individual estimates of risk .
•In the year after study enrollment, 1661 patients died (15.9 percent by life-table analysis). At the population level, one-year predicted mortality was 9.7 percent for the SHFM (C statistic of 0.66) and 17.5 percent for the MAGGIC risk calculator (C statistic of 0.69).
•However, the SHFM and MAGGIC risk scores did not reliably predict one-year mortality at the individual level:
-The sensitivity of the models for predicting death within one year at the individual level was very low. The SHFM predicted a greater than 50 percent probability of dying in the next year for only 8 of the 1661 patients who died (sensitivity for one-year death was 0.5 percent) and for five patients who lived. Similarly, the MAGGIC risk calculator predicted a more than 50 percent probability of dying in the next year for 52 of the 1661 patients who died (sensitivity 3.1 percent) and for 63 patients who lived.
-Conversely, the SHFM estimated that 8496 patients (77.8 percent) had a less than 15 percent probability of dying at one year, yet nearly two-thirds of the deaths occurred among patients in this lower-risk score range (n = 997). Similarly, the MAGGIC risk calculator estimated a probability of dying of less than 25 percent for the majority of patients who died at one year (n = 914).
●Multiple relevant outcomes – Most prognostic models in heart failure focus on the singular outcome of mortality. However, other clinical outcomes (symptoms, limited functional capacity, loss of independence, reduced social functioning, decreased quality of life, and increased caregiver commitment) also rank high in importance to individual patients, particularly in advanced disease. Multiple studies have documented some patients’ willingness to sacrifice survival in exchange for symptom relief, a trade-off that varies between patients and within the same patient over time. Unfortunately, much less is known about risk prediction for nonsurvival outcomes such as health status. Even less is known about the relative impact of disease and therapies on caregiver burden and quality of life for family members.
STRATEGIES FOR PROVISION OF PALLIATIVE CARE
Education and training — Clinicians require education and training to understand and implement the roles and functions of palliative care. Educational programs, such as workshops, seminars, and integrated tracks at cardiology conferences can help providers who are unfamiliar or uncomfortable with palliative care principles (table 5).
Hospice and Palliative Medicine is recognized as a medical subspecialty by the American Board of Medical Specialties, and in other countries including Canada, England, Ireland, Australia, and New Zealand . Specialty certifications are also available for nurses, social workers, and chaplains. Master’s degree programs have also been developed for physicians, nurse practitioners, physician assistants, and nurses who are interested in becoming community palliative care specialists. In most jurisdictions, subspecialty palliative care is provided by an interdisciplinary team who work with a patient’s other clinicians to provide an "extra layer" of support. The availability of subspecialty palliative care services is variable and in overall shortage, such that provision of primary palliative care services by non-palliative care providers will always be an essential part of heart failure care. (See "Benefits, services, and models of subspecialty palliative care" and "Palliative care and hospice outside of the United States".)
Cultural acceptance of end-of-life planning is key to improving the availability and quality of palliative care. If death is consistently viewed as failure rather than an important chapter of life, patients and families are destined to be ill prepared when heart failure becomes unresponsive to therapies.
Requirements and incentives — In the United States, the Accreditation Council for Graduate Medical Education (for residency training) includes "interpersonal and communication skills" as one of its six core competencies [64,65]. The Joint Commission has introduced performance measures for advanced heart failure certification in the United States that include discussions of advance care planning and advance directive documentation; however, most hospitals have chosen not to participate in such certification . The United States Centers for Medicare and Medicaid Services plan to reimburse physicians for engaging patients in advance care planning discussions should provide some financial backing , although payment alone is unlikely to improve end-of-life care . Increasing mandates for shared decision making for difficult cardiac device decisions as part of payment may help (eg, Medicare requirements for palliative care to be part of LVAD teams ), although defining what constitutes a high-quality, shared-decision discussion is only now being worked out by organizations like the National Quality Forum .
Enhancing communication — Effective communication with patients and their families about their preferences for care and the potential effects of heart failure on morbidity and mortality early in the course of illness may facilitate later conversations when the patients' disease status worsens. End-of-life discussions are inherently sensitive, often times consuming, and require navigating the complex needs of patients and families. Most patients and families desire open, honest, and accurate information [71-74], but there are cultural differences and individual preferences that need to be assessed and respected. (See "Communication of prognosis in palliative care" and "Discussing serious news".)
The role of decision aids in facilitating communication is discussed separately. (See "Palliative care for patients with advanced heart failure: Decision support and management of symptoms", section on 'Decision support'.)
Introducing palliative care — It can be helpful to introduce palliative care as "supportive care" and explain that it focuses on symptom management and team communication about the patient’s care goals and treatment wishes. A study found that patients and caregivers better understood the meaning of supportive care than palliative care, which is often misperceived as only end-of-life care . It is important to emphasize that palliative care is most often provided in addition to a patient’s current treatment plan. (See "Discussing goals of care".)
Discussion of prognosis and care options
Rationale — Patient-centered care and shared decision making are central to palliative care for patients with heart failure. A shared decision making model involves a bidirectional exchange of information between clinicians and patients enabling collaborative deliberation in choosing the best courses of action; information about prognosis is a key component of this discussion. Patient satisfaction scores, integration of inpatient and outpatient settings, and patient-reported outcomes are particularly applicable to the intersection of heart failure and palliative care . Shared decision making recognizes that there are often complex trade-offs when taking medical decisions and it fulfills the ethical and legal mandate to fully inform patients of all risks and benefits of a treatment. This is particularly true in heart failure, where several medical decisions (eg, choosing whether or not to proceed with destination therapy LVAD or with implantable cardioverter-defibrillator implantation in a frail older patient) are preference-sensitive, owing to their high-risk, high-reward nature, as well as their impact on the mode of death. (See "Communication of prognosis in palliative care", section on 'Rationale for discussing prognosis'.)
When and how to discuss prognosis — Talking with a patient who is approaching the end of life about their poor prognosis is a "bad news" conversation, so the clinician should prepare in advance for the conversation . Discussions regarding end-of-life care should ideally be initiated while the patient is still capable of participating in decision making and the patient should have the option to be accompanied by a caregiver for support and aid in processing the information. The discussion should be patient-centered, balancing hope and reality with sensitivity. These issues are discussed in detail separately. (See "Communication of prognosis in palliative care" and "Discussing serious news".)
Briefly summarized, the strategy for discussion should include "Ask-Tell-Ask" (see "Communication of prognosis in palliative care", section on 'How to discuss prognosis'):
●Explain to the patient and family the importance of understanding prognosis in making health care decisions and life choices
●Ask what the patient understands about prognosis
●Negotiate the content of the prognostic discussion (eg, qualitative versus quantitative estimates)
●Answer their queries and correct misunderstandings
●Provide information you feel is critical to decisions about care
●Ask what questions they have and confirm their understanding of the answers
●Respond to emotion (see 'Attending to emotion and its impact on cognition' below)
●Agree on a plan for the next steps
In planning for next steps, the uncertainty of the individual's course and length of life should be acknowledged , as should the clinician’s commitment to providing care or continuity with other providers. Planning care is critical, and can be framed as "hope for the best and prepare for the worst" . (See "Palliative care for patients with advanced heart failure: Decision support and management of symptoms", section on 'Advance care directives and preparedness planning'.)
Attending to emotion and its impact on cognition — Decision theory suggests that cognitive and emotional aspects of decision-making occur simultaneously . Decision-making for heart failure care often occurs while the patient’s condition is deteriorating with high risk of imminent death. At such a time, patients and their families often have strong emotions and concerns about death . Until such emotions are addressed, people have difficulty engaging in the more cognitive aspects of medical decision making. This can be done by using explicit language normalizing such emotions. The NURSE statements are a helpful tool for guiding discussion of emotion (table 6) . Studies have shown that patients with end-stage illness find it helpful to discuss death and fear of death, and retrospectively many prefer direct and honest communication . (See "Communication of prognosis in palliative care".)
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.)
SUMMARY AND RECOMMENDATIONS
●Palliative care is an interdisciplinary approach to care that focuses on improving quality of life for patients and their families through communication, clarification of goals of care, shared decision making, coordination of care and advance care planning; it prioritizes relief from symptoms, integrates psychological and spiritual aspects of care, and offers a support system to help families cope during illness and bereavement. Palliative care has a role across the stages of heart failure, starting early in the course of illness, intensifying in end-stage disease, and extending into caregiver bereavement. (See 'Objectives and components' above and 'Palliative care types and indications' above.)
●Palliative care for patients with heart failure includes primary palliative care provided by non-palliative care clinicians as well as secondary palliative care provided by palliative care specialists.
●Supportive, palliative-type services should be incorporated into the practices of all clinicians caring for patients with heart failure. Primary palliative care includes the following: strategies for addressing dyspnea, pain, and fatigue; approaches to depression and anxiety; discussions around prognosis, goals of care, and shared decision making; and execution of advanced care directives. (See 'Primary palliative care' above.)
●We suggest referral for secondary (specialty) palliative care for persistent New York Heart Association functional class IV, multiple comorbidities (eg, heart failure with renal failure, oxygen-dependent chronic lung disease, dementia, or metastatic cancer ), progressive frailty, consideration of major interventions (eg, left ventricular assist devices), or when patient preferences shift the emphasis of care to quality of life. (See 'Secondary (specialty) palliative care' above.)
●Barriers to provision of palliative care in patients with heart failure include lack of evidence-based indications for palliative care, lack of provider and patient understanding about who can benefit from palliative care (eg, all patients with heart failure, not only those with terminal disease) and what palliative care can offer, uncertainty about patient prognosis, and limited provider education and training on how to discuss and implement palliative care. (See 'Barriers to palliative care' above.)
●Estimating prognosis in patients with heart failure is important for planning and shared decision-making. However, accurate prognostication is challenging given wide variation in prognosis among individual patients, the frequent co-occurrence of comorbidities, undulating disease course, and contrasting modes of death. (See 'Disease course and prognosis' above.)
●We recommend the combined use of objective risk models with clinical gestalt. Validated risk scores to estimate mortality risk in patients with heart failure include the Seattle Heart Failure Model (SHFM) and the Meta-Analysis Global Group in Chronic Heart Failure (MAGGIC) risk calculator. Clinicians can leverage objective risk models to minimize their own biases, while recognizing risk model limitations and uncertainties. (See 'Risk models' above and "Predictors of survival in heart failure with reduced ejection fraction", section on 'Predictive models'.)
●Communication with patients and their families about their preferences for care and the potential effects of heart failure on morbidity and mortality early in the course of illness may facilitate later conversations when the patients' disease status worsens. The majority of patients with heart failure prefer open and honest communication about their illness with healthcare providers. (See 'Enhancing communication' above.)
●A shared decision making model involves a bidirectional exchange of information between clinicians and patients enabling collaborative deliberation in choosing the best courses of action; information about prognosis is a key component of this discussion. (See 'Discussion of prognosis and care options' above.)
ACKNOWLEDGMENT — The UpToDate editorial staff would like to thank Dr. Sarah J. Goodlin for her past contributions as an author to prior versions of this topic review.