Palliative care, sometimes now referred to as supportive care, is specialized care that focuses on improving quality of life (QOL) through relief of stress and symptoms for patients with serious illness.¹ While most often associated with oncology, palliative care is appropriate for any patient in the advanced stages of illness, including patients with heart failure (HF). HF patients not only suffer from dyspnea and fatigue as a result of their disease process, but also have a high burden of somatic complaints, including pain, nausea, anxiety, and depression, leading to significant psychosocial distress for both patients and their caregivers.^2,3 Advance care planning and complex shared decision making become increasingly important as HF progresses, particularly when patients are faced with options such as transplant and mechanical circulatory support, which may not align well with their overall goals or preferences. Because of the unique role palliative care has in the management of all of these domains, several recent consensus statements and care guidelines have recommended the incorporation of palliative care into the care of patients with advanced HF.^4-8

Despite this growing recognition of the need for palliative care for patients with HF, many challenges exist to making effective palliative care interventions available. First, the palliative care evidence base is not as robust as it is in oncology. Little descriptive data exists on HF patients who receive palliative care, and there are only a handful of studies examining which palliative care interventions are effective in HF.^9-11 Unfortunately the data from these studies may be difficult to generalize to all patients with HF given the variety of clinical presentations and the wide range of patient populations, from young patients with acute cardiomyopathies to older patients with chronic cardiomyopathies, affected by HF. In addition, funding sources for palliative care HF research are limited because historically, most of the funding for palliative care research is focused on oncology. Lastly, while many HF leaders support palliative care, it often has a low profile at national cardiology meetings.

The management of physical and psychosocial distress is more challenging for patients with HF. Most traditional models for palliative care, including the Medicare hospice benefit, were designed for cancer patients, for whom prognostication has a stronger evidence base. In contrast to this, prognostication in end-stage HF is difficult.¹² While most patients with stage D disease will die within 6 to 12 months, some may have substantially longer survival, and thus, patients with HF can often benefit from palliative care for prolonged periods of time. In the traditional model of palliative care, there is also a clear distinction between curative therapies, such as chemotherapy, and palliative therapies. In HF, the line between curative and palliative therapies is blurred. Many therapies considered "curative" by payers may also be essential to maximizing palliation and promoting QOL, such as the use of inotropes. Despite this, these drugs may not be covered for long-term use in hospice (Table 1).

Table 1: Differences Between the Traditional Model of Palliative Care That Was Developed for Oncology Patients vs. the Optimal Model of Palliative Care for Patients With Advanced Heart Failure

	Traditional Model for Oncology/Hospice	Optimal Model for Advanced Heart Failure
Timing of Referral	When curative treatments have been exhausted, often during the last 6 months of life	When patient develops NYHA Class III or IV symptoms or ACC/AHA Stage D disease
Prognosis and Disease Trajectory	Onset of functional decline strongly correlated with 6-month prognosis, regardless of cancer type	Prognosis with advanced heart failure can be quite variable, with many patients living beyond one year and illness trajectory marked by exacerbations and remissions
Care Settings	Prognosis > 6 months Palliative care clinic Palliative home care Inpatient palliative care consults Prognosis < 6 months Hospice care after curative therapies have been stopped (most common setting)	Palliative care clinic, home care, and inpatient palliative care consults, as well as palliative care in skilled nursing facilities since many patients lose functional decline early and lose the ability to live at home Hospice care when patients decide to forego readmission; many patients live for longer than 6 months on hospice and need to be recertified
Medications and Therapies	Most curative treatments are discontinued when goals of care shift towards palliation because most cancer therapies are given with a curative intent, and side effects from these medications often adversely affect quality of life	Many therapies are continued throughout the course of illness as they continue to impact quality of life even if they no longer impact quantity of life
Role of Caregiver Burden and Psychosocial Stressors	Can be significant during the last 6 months of life, and caregiver and psychosocial support is often provided as a part of the hospice benefit	Patients require more caregiver support for a longer period of time due to early loss of functional status and inability to continue working, often well before patients and caregivers can benefit from the support provided by the hospice benefit Psychosocial support must be outside of the standard benefit structure in the form of innovative community-based programs funded by payers and providers

Although palliative care providers are increasingly caring for HF patients, there are few comprehensive palliative care programs available to those patients. Most palliative care is provided in the hospital, and there is a large unmet need for palliative care in the outpatient setting. Even when institutions have outpatient palliative care programs for HF, they are often targeted at specific populations like those being considered for mechanical circulatory support (MCS) or transcatheter aortic valve replacement. Outside of these settings, many cardiologists may not be familiar enough with palliative care to recognize when or why to make a referral or lack the training to provide primary palliative care to their own patients (Table 2).

Table 2: Indication for Referral to Palliative Care for Patients With Heart Failure

Symptoms NYHA class III/IV symptoms Frequent heart failure readmissions Recurrent ICD shocks Refractory angina Anxiety or depression adversely affecting patient's quality of life or ability to best manage illness Milestones Referral VAD Transplant TAVR Home inotropic therapy Caregiver distress

In recognition of the need to make palliative care available to both inpatients and outpatients with HF, we have developed a comprehensive specialty, heart failure palliative care program over the past 10 years. It has grown from an inpatient consult presence and one outpatient clinic session a week to daily outpatient clinic sessions within the HF clinic with routine visits for patients considered MCS or transplant. Beyond the outpatient HF clinics, our health system has developed models to provide supportive and palliative care for patients in the community who are not eligible for hospice care (Figure 1). We are also addressing the palliative care knowledge gap for cardiologists by introducing the first-ever structured communication training using skilled educators and standardized patients for cardiology attending physicians and fellows in 2014.¹³

Figure 1: Model for Referral Patterns Into Community Palliative Care Programs for Patients With Advanced Heart Failure

Thought leaders in the fields of both palliative care and HF have recognized the need to further develop palliative care for HF. In June 2015, thought leaders came together to explore opportunities for the advancement of palliative care for patients with HF. Through funding by several private foundations and academic medical centers, the IMPACT-HF group gathered for their initial symposium. Many avenues for improvement were identified. Some of these included combining shared experience and networking, leveraging research experience and connections to national organizations and funding entities. Because the existing research base is small, many unanswered questions are available for exploration (Table 3). Also, because the prevalence of HF will only increase as the US population ages, the impact of palliative care interventions has the potential to be great. Finally, the shift in reimbursement models from fee-for-service to quality-based payment, providers and payers will be incentivized to support innovative ways to care for patients with HF if we can demonstrate that quality palliative care improves patient-centered outcomes and provides care that is in alignment with patients' goals and values. IMPACT-HF seeks to inform the development of these types of programs while simultaneously defining clear metrics with which to measure quality of care.

Table 3: Unanswered Research Questions in the Field of Palliative Care for Patients With Heart Failure

Components of Palliative Care Interventions for HF	Symptom Management for Patients With HF	Communication and Advance Care Planning
What interventions should be a part of palliative care for HF (i.e., improved communication, psychosocial and spiritual support, advance care planning, symptom management, care coordination) How do we assess impact of these interventions? What are the appropriate outcome measures to use in the assessment of above?	Which symptoms are most prominent for patients with HF Symptoms directly related to HF (i.e., fatigue, dyspnea) that are refractory to standard HF therapies Symptoms related to co-morbid conditions (i.e., pain from osteoarthritis or diabetic neuropathy, anxiety and depression) What are effective methods for managing these symptoms?	What is the optimal timing of advance care planning for patients with HF? What are barriers to effective provider-patient conversations about goals of care and advance care planning? How effective is communication training for cardiologists in ensuring that the care HF patients receive is in alignment with their goals and values?

In summary, leaders in the field of HF agree that palliative care is beneficial to patients with HF and should be available to them. Despite this, many barriers exist to providing appropriate palliative care to these patients including lack of robust evidence base, variable clinical presentation, and limited funding for research. Traditionally, palliative care models have been designed for cancer patients and are not a good fit for HF, for which prognosis is more uncertain and the distinction between curative and palliative therapies is not clear. Despite this, clinical models of HF-focused palliative care are beginning to emerge. The experience from these programs and the formation of IMPACT-HF will hopefully allow for more widespread delivery of palliative care to the HF population.

References

1. Center to Advance Palliative Care (CAPC website). Available at: www.capc.org. Accessed 10/22/2015.
2. Blindermann CD, Homel P, Billings JA, Portenoy RK, Tennstedt SL. Symptom distress and quality of life in patients with advanced congestive heart failure. J Pain Symptom Manage 2008;35:594-603.
3. Bekelman DB, Hutt E, Masoudi FA, Kutner JS, Rumsfeld JS. Defining the role of palliative care in older adults with heart failure. Int J Cardiol 2008;125:183-90.
4. Pamboukian AV, Teuteberg JJ, Feldman D. The 2013 International Society for Heart and Lung Transplantation Guidelines for mechanical circulatory support: executive summary. J Heart Lung Transplant 2013;32:157-87.
5. Yancy CW, Jessup M, Bozkurt B. et al. 2013 ACCF/AHA guideline for the management of heart failure: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines. J Am Coll Cardiol 2013;128:e240-e327.
6. Allen LA, Stevenson LW, Grady KL, et al. Decision making in advanced heart failure: a scientific statement from the American Heart Association. Circulation 2012;125:1928-52.
7. Jurgens CY, Goodlin S, Dolansky M, et al. Heart failure management in skilled nursing facilities: a scientific statement from the American Heart Association and the Heart Failure Society of America. Circ Heart Fail 2015;8:655-87.
8. Fang JC, Ewald GA, Allen LA, et al. Advanced (stage D) heart failure: a statement from the Heart Failure Society of America Guidelines Committee. J Cardiac Fail 2015;21:519-34
9. Bakitas M, MacMartin M, Trezepkowski K, et al. Palliative care consultations for heart failure patients: how many, when, and why? J Cardiac Fail 2013;19:193-201.
10. Sidebottom AC, Jorgenson A, Richards H, et al. Inpatient palliative care for patients with acute heart failure: outcomes from a randomized trial. J Pall Med 2014;18:134-42.
11. Evangelista LS, Lombardo D, Malik S, et al. Examining the effects of an outpatient palliative care consultation on symptom burden, depression, and quality of life in patients with symptomatic heart failure. J Cardiac Fail 2012;18:894-99.
12. Haga K, Murray S, Reid J, et al. Identifying community based chronic heart failure patients in the last year of life: a comparison of the Gold Standards Framework Prognostic Indicator Guide and the Seattle Heart Failure Model. Heart 2012;98:579-83.
13. Berlacher K, Teuteberg W, Reitschuler-Cross E, Arnold RM. Oral Abstract: CardioTalk: The Future of Communication Training in Cardiovascular Medicine. San Diego: American College of Cardiology 65th Annual Scientific Session; March 2015.

Keywords: Academic Medical Centers, Advance Care Planning, Ambulatory Care, Ambulatory Care Facilities, Anxiety, Cardiomyopathies, Caregivers, Consensus, Defibrillators, Implantable, Depression, Diabetic Neuropathies, Dyspnea, Heart Failure, Heart-Assist Devices, Home Care Services, Hospice Care, Hospices, Inpatients, Medicare, Nausea, Osteoarthritis, Outcome Assessment, Health Care, Outpatients, Pain, Palliative Care, Patient Readmission, Pharmaceutical Preparations, Prevalence, Prognosis, Quality of Life, Skilled Nursing Facilities, Transcatheter Aortic Valve Replacement

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