The State of the Science on Integrating Palliative Care in Heart Failure

Background: Heart failure (HF) is a chronic progressive illness associated with physical and psychological burdens, high morbidity, mortality, and healthcare utilization. Palliative care is interdisciplinary care that aims to relieve suffering and improve quality of life for persons with serious illness and their families. It is offered simultaneously with disease-oriented care, unlike hospice or end-of-life care. Despite the demonstrated benefits of palliative care in other populations, evidence for palliative care in the HF population is limited. Objective: The objective of this article is to describe the current evidence and the gaps in the evidence that will need to be improved to demonstrate the benefits of integrating palliative care into the care of patients with advanced HF and their family caregivers. Methods: We reviewed the literature to examine the state of the science and to identify gaps in palliative care integration for persons with HF and their families. We then convened an interdisciplinary working group at an NIH/NPCRC sponsored workshop to review the evidence base and develop a research agenda to address these gaps. Results: We identified four key research priorities to improve palliative care for patients with HF and their families: (1) to better understand patients' uncontrolled symptoms, (2) to better characterize and address the needs of the caregivers of advanced HF patients, (3) to improve patient and family understanding of HF disease trajectory and the importance of advance care planning, and (4) to determine the best models of palliative care, including models for those who want to continue life-prolonging therapies. Conclusions: The goal of this research agenda is to motivate patient, provider, policy, and payor stakeholders, including funders, to identify the key research topics that have the potential to improve the quality of care for patients with HF and their families.