Preferences of people with advanced heart failure - a structured narrative literature review to inform decision making in the palliative care setting

Background and Approach: There is a growing emphasis on the need for high-quality and patient-centered palliative care for patients with heart failure (HF) near end of life. Accordingly, clinicians require adequate knowledge of patient values and preferences, but this topic has been underreported in the HF literature. In response, we conducted a structured narrative review of available evidence regarding patient preferences for HF care near end of life, focusing on circumstances of death, advance care planning, and preferences for specific HF therapies. Results: Patients had widely varying preferences for sudden (unaware) death versus a death that was anticipated (aware), which would allow time to make arrangements and time with family; preferences influenced their choice of HF therapies. Patients and physicians rarely discussed advance care planning; physicians were rarely aware of resuscitation preferences. Advance care planning discussions rarely included preferences for limiting implantable cardioverter defibrillator use, and patients were often uninformed of the option of implantable cardioverter defibrillator deactivation. A substantial minority of patients strongly preferred improved quality of life versus extended survival, but preferences of individuals could not be easily predicted. Conclusions: Current evidence regarding preferences of patients with HF near end of life suggests substantial opportunities for improvement of end-of-life HF care. Most notably, the wide distribution of patient preferences highlights the need to tailor approach to patient wishes, avoiding assumptions of patient wishes. A research agenda and implications for health care provider training are proposed.