Advance Care Planning Among Patients with Heart Failure: A Review of Challenges and Approaches to Better Communication

From the Rand Corporation and UCLA Fielding School of Public Health, Santa Monica, CA (Dr. Ahluwalia) and University of Southern California, Leonard Davis School of Gerontology, Los Angeles, CA (Dr. Enguidanos).

Abstract

• Objective: To review the relevance of advance care planning to heart failure management, describe key advance care planning challenges, and provide clinicians with actionable guidance for engaging in advance care planning conversations.
• Methods: Review of the literature.
• Results: Although most patients with heart failure prefer to receive thorough and honest information about their health condition and prognosis, the unpredictability of the heart failure trajectory coupled with physician barriers including discomfort with emotionally-laden topics and difficulty identifying the “right” time to engage in advance care planning, and systems barriers such as inadequate clinic time and limited reimbursement, impede timely engagement in advance care planning discussions. Approaches to effective advance care planning communication include using open-ended questions to stimulate patient engagement, evaluating how much information the patient wants to ensure patient-centeredness, and using empathic language to demonstrate support and understanding. While successful models of advance care planning communication have been identified, replication is limited due to the resource intense nature of these approaches.
• Conclusion: Challenges to advance care planning discussions among patients with heart failure may be mitigated through the establishment of communication quality standards as well as guidelines promoting early and ongoing advance care planning discussions, as well as reimbursement for outpatient discussions.

Heart failure, a leading cause of death, disability, and health care costs in the United States, is an incurable and life-limiting illness that is becoming increasingly prevalent due to an aging population and improved life expectancy. Approximately 5.3 million Americans are currently living with heart failure [1], with more than 550,000 new cases diagnosed each year [2]. Heart failure disproportionately affects older adults; about 80% of all cases occur in persons aged 65 years or older [3], and heart failure is the leading cause of hospital admissions among older adults [4]. The burden and impact of heart failure peaks near the end of life; 80% of Medicare beneficiaries with heart failure are hospitalized in the last 6 months of life [5].

The Trajectory of Heart Failure

Patients with heart failure experience a highly variable, nonlinear clinical trajectory marked by progressive deterioration and frequent exacerbations requiring hospitalization [6]. Their prognosis, though uncertain, is poor, with reported 1-year mortality rates following a hospitalization between 30% and 50% and 5-year mortality as high as 75% [7–11], a survival rate worse than that of some cancers [12]. Patients with heart failure caused by ischemic heart disease are at high risk for sudden cardiac death, particularly at earlier stages of the disease, which can confound the ability to appropriately plan for the future [13]. Those who survive to more advanced stages of heart failure face worsening quality of life [14–16], driven by a high prevalence of fatigue, breathlessness, pain, and depression [17–24]. Indeed, patients with heart failure have a similar symptom burden to patients with advanced cancer [25]. Older adults with heart failure also have a high comorbidity burden that further complicates both symptomology and disease trajectory with implications for decision-making about life-prolonging heart failure therapies [26,27].