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

Advance Care Planning in Heart Failure

The unpredictable nature of heart failure makes it difficult for patients and families to plan and prepare for their future, yet it is this very uncertainty that makes advance care planning (ACP) so critical for heart failure patients. Clear and honest patient-clinician communication about ACP, including an exploration of patient values and goals for care in the context of prognostic information, is essential to patient-centered treatment decision-making [28]. This is particularly relevant in heart failure, where a range of high-intensity, invasive, and costly interventions are increasingly being applied (eg, ventricular assist devices) without equivalent attention to quality of life and patients’ long-term goals for care.

Patients with heart failure and their families face multiple complex treatment decisions along the trajectory of their illness, such as discontinuation of beta blockers among patients with refractory fluid overload or angiotensin-converting enzyme inhibitors in end-stage patients with symptomatic hypotension [29,30]. In end-stage heart failure patients, deactivation of an implantable cardiac defibrillator might be considered to avoid the pain and distress associated with repeated shocks. In contrast, other interventions such as cardiac resynchronization therapy and continuous inotropic infusion have quality of life benefits; continuation of these therapies may be appropriate even when discontinuing other interventions. Such decisions should be guided by a thorough understanding of the patient’s expressed preferences and values, ideally assessed early in the trajectory of the disease and continuously re-evaluated as the diseases progresses.

The American Heart Association supports early and regular patient-provider ACP discussions to guide heart failure patients’ future decision-making [31], and recommends that such discussions be initiated in the outpatient setting, prior to and in anticipation of clinical decline. ACP communication plays a critical role in enhancing patients’ understanding of their diagnosis, treatment, prognosis, and choices in end-of-life care [31]. ACP communication also helps the clinician to better understand the context within which patients and their caregivers might make health care decisions, including their values and preferences for care. Patient-provider discussions about ACP focused on understanding patient values and initiated early in the trajectory of serious illness can support future in-the-moment decision-making, and is likely more effective than asking patients to make specific treatment decisions in advance [32]. A growing body of rigorous research has shown that ACP communication is associated with greater preference-concordant care and congruence in patient-surrogate understanding of patient preferences, lower costs, and less aggressive care at the end of life [33–37].

Patient Preferences for ACP Communication

Most patients with heart failure and their caregivers want honest disclosure regarding prognosis and to receive information about the expected trajectory of their disease [38–41] as early as possible [38] to help them plan and prepare for their future. Patients and their caregivers prefer to have these conversations with their physician [38] or other provider most familiar with the patient and family [39]. Patients also express a preference for support with dealing with the uncertainty inherent to heart failure [39]. Although most patients and caregivers desire to receive clear and honest communication about their disease, it is important to note that patients may vary in the extent of information they prefer to receive about their heart failure, with some individuals preferring not to talk about the end of life and future care needs at all [39,42–44].