Palliative care provides symptom management, psychosocial support, and facilitation of shared decision-making. Patients with cardiovascular disease at end of life suffer high symptom burden and face complex medical decisions. In recognition of the needs of heart failure (HF) patients, statements and guidelines^1,2 recommend palliative care involvement, especially for patients with stage D HF. The Centers for Medicaid and Medicare Services have also mandated that palliative care specialists play a role in the care of patients considered for destination ventricular assist device (VAD) therapy. Nonetheless, few patients with HF receive formal palliative care. In a chart review of 1,320 patients admitted for HF, only 10% received palliative care consults. The mean time from palliative care consultation to death was 21 days.³ Only 19% of Medicare patients with HF accessed their hospice benefit before death.⁴

Challenges inherent in providing end-of-life care to the HF patient population include difficult prognostication and complexities in medical and device management.⁵ These aspects may serve as barriers to timely palliative care and prevent appropriate transfer to hospice, despite the life-limiting and highly symptomatic nature of end-stage cardiac disease.⁶

Difficulty in prognostication for HF patients has been well known since the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments SUPPORT trials over 25 years ago.^7,8 Despite the development of models that are accurate for populations, prognostication for individuals remains problematic.⁹ The unpredictable trajectory of HF complicates the ability to identify patients at end of life.⁵

Unlike cancer treatment where the distinction between curative and palliative treatment is important, cardiac medications and devices often provide the dual effect of symptom alleviation and life prolongation. Patients with HF may be offered an array of implanted device therapies including defibrillation, pacing, resynchronization, and ventricular support to prevent sudden cardiac death and to improve symptoms and quality of life. As patients approach end of life, withdrawal or modification of device therapies is appropriate according to patients' goals and preferences. Shocks in end of life are associated with pain, anxiety, poor quality of life, and increased mortality.¹⁰ On the other hand, withdrawal of pacing and resynchronization may result in worsening of symptoms and quality of life.¹¹ Depending on patients' preferences, it may be reasonable to continue these functions even when defibrillation is deactivated. Patients with VADs may endure complications such as infection, bleeding, thrombotic events, and pump failure at any time after implantation.¹⁵ In addition, they face loss of decision-making capacity in the setting of a stroke.¹²

However, many device patients have never considered how to address device deactivation at the end of their lives or discussed it with their clinicians.¹⁴ Many cardiologists lack comfort in addressing implantable cardiac defibrillator (ICD) deactivation in particular,¹⁵ despite scientific statements recommending that circumstances in which device therapy would not align with patients' goals should be discussed at the time of implant.¹⁶

In light of these barriers, palliative care specialist involvement should be considered early in the disease process, but especially as patients face difficult decisions related to shifting focus from curative therapy to palliation and hospice.

According to Medicare hospice guidelines, hospice may be considered for HF patients 1) optimally treated or not a candidate for surgery and 2) New York Heart Association (NYHA) IV with symptoms at rest despite medical therapy, preferably with angiotensin-converting enzyme (ACE) inhibitors or angiotensin receptor blockers (ARBs). Other supporting factors include presence of symptomatic arrhythmias, refractory ventricular arrhythmias, history of cardiac arrest, history of syncope, or history of stroke due to cardiac embolism.¹⁸ Notably, one observational study found that patients with HF who were enrolled in hospice had a mean survival of 29 days longer than those not in hospice.¹⁹ Longer length of stay in hospice is also associated with improved symptom control and increased family satisfaction.²⁰

Critical turning points in the course of a patient's illness often signal the need to address palliative care decisions and consider transition to hospice, including changes in symptoms, need for additional interventions, complications of therapies, and development of other life-limiting diseases such as dementia and cancer.²¹ Palliative care consultants assist with identifying these points and defining patient values, wishes, and goals, establishing the foundation for shared decision-making about foregoing and/or limiting interventions, and transitioning to hospice.²²

In sum, given the complex prognostication and nuances in management of cardiac medications and devices, early and iterative collaboration between primary care clinicians, cardiologists, and other specialists ensures comprehensive end-of-life care for HF patients, particularly aiding appropriate transition to hospice.

References

1. Hunt SA, Abraham WT, Chin MH, et al. ACC/AHA 2005 guideline update for the diagnosis and management of chronic heart failure in the adult: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Update the 2001 Guidelines for the Evaluation and Management of Heart Failure). Circulation 2005;112:e154-e235.
2. 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;21:519-534.
3. Bakitas M, Macmartin M, Trzepkowski K, et al.Palliative care consultations for heart failure patients: how many, when, and why? J Card Fail 2013;19:193-201.
4. Bakitas M, Bishop MF, Carson P, Stephens L. Developing successful models of cancer palliative care services. Semin Oncol Nurs 2010;26:266-84.
5. Goodlin SJ. Palliative care in congestive heart failure. JACC 2009;54:386-96.
6. RoseEA, Gelijns AC, Moskowitz AJ, et al. Long-term use of a left ventricular assist device for end-stage heart failure. NEJM 2001;345:1435-43.
7. Connors AF, Dawson NV, Desbiens NA, et al. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995;274:1591-8.
8. Krumholz HM, Chen J, Murillo JE, Cohen DJ, Radford MJ. Admission to hospitals with on-site cardiac catheterization facilities: impact on long-term costs and outcomes. Circulation 1998;98:2010-6.
9. Lewis EF. End of life care in advanced heart failure. Curr Treat Options Cardiovasc Med 2011;13:79-89.
10. Sobanski P, Jaarsma T, Krajnik M. End-of-life matters in chronic heart failure patients. Curr Opin Support Palliat Care 2014;8:364-70.
11. Cleland JG, Daubert JC, Erdmann E, et al. The effect of cardiac resynchronization on morbidity and mortality in heart failure. NEJM 2005;352:1539-49.
12. Kirklin JK, Naftel DC, Pagani FD, et al. Sixth INTERMACS Annual Report: A 10,000-patient Database. J Heart Lung Transplant 2014;33:555-64.
13. Swetz KM, Kamal AH, Matlock DD, et al. Preparedness planning before mechanical circulatory support: a 'how-to' guide for palliative medicine clinicians. J Pain Symptom Manage 2014;47:926-35.
14. Kirkpatrick JN, Gottlieb M, Sehgal P, Patel R, Verdino RJ. Deactivation of implantable cardioverter defibrillators in terminal illness and end of life care. Am J Cardiol 2012;109:91-94.
15. Mueller PS, Jenkins SM, Bramstedt A, Hayes DL. Deactivating implanted cardiac devices in terminally patients: practices and attitudes. Pacing Clin Electrophysiol 2008; 31:560-68.
16. Lampert R, Hayes DL, Annas GJ, et al. HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy. Heart Rhythm 2010;7:1008-26.
17. Goodlin SJ, Kutner JS, Connor SR, Ryndes T, Houser J, Hauptman PJ. Hospice care for heart failure patients. J Pain Symptom Manage 2005;29:525-8.
18. Centers for Medicare and Medicaid Services. Original Medicare (Part A and B) Eligibility and Enrollment. Available at: https://www.cms.gov/Medicare/Eligibility-andEnrollment/OrigMedicarePartABEligEnrol/. Accessed September 20, 2015.
19. Connor SR, Pyenson B, Fitch K, Spence C, Iwasaki K. Comparing hospice and nonhospice patient survival among patients who die within a three-year window. J Pain Symptom Manage 2007;33:238-46.
20. Temel JS, Greer JA, Muzikansky A, et al. Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer. NEJM 2010;363:733-42.
21. Goodlin SJ, Hauptman PJ, Arnold R, et al. Consensus statement: Palliative and supportive care in advanced heart failure. J Card Fail 2004;10:200-9.
22. Allen LA, Smoyer Tomic KE, Smith DM, Wilson KL, Agodoa I. Rates and predictors of 30-day readmission among commercially insured and Medicaid-enrolled patients hospitalized with systolic heart failure. Circ Heart Fail 2012;5:672-9.

Keywords: Geriatrics, Angiotensin Receptor Antagonists, Angiotensin-Converting Enzyme Inhibitors, Anxiety, Arrhythmias, Cardiac, Cooperative Behavior, Death, Sudden, Cardiac, Defibrillators, Dementia, Embolism, Heart Failure, Heart-Assist Devices, Hospice Care, Hospices, Length of Stay, Life Support Care, Medicaid, Medicare, Neoplasms, Pain, Palliative Care, Patient Preference, Personal Satisfaction, Primary Health Care, Prognosis, Quality of Life, Referral and Consultation, Stroke, Syncope, Terminal Care, ACC Scientific Session Newspaper

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