Patients' Perceptions of the Role of Palliative Care in Late-Stage Heart Failure

University Of Rochester, Rochester NY

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Abstract

Cardiovascular (CV) disease is the leading cause of death in the US, with heart failure (HF) accounting for the majority of deaths from CV disease. Heart failure, which affects more than 5 million people in the US, is a life-limiting condition associated with markedly decreased function and quality of life and high mortality rates. The National Institutes of Health have indicated that a more thorough understanding of the experiences of people confronting life-limiting conditions, including those with non-cancer diagnoses, is warranted. There is consensus that communication with health care providers, specifically about prognosis and treatment decisions, is not well managed in late-stage HF, and this is associated with adverse consequences. Many clinicians and researchers have recently been advocating for an increased role of palliative care (PC) consultation in HF and there has been a subsequent trend toward increased referrals to PC services for patients with HF, for goals of care discussions. Despite this trend, the perspectives of HF patients and their family members of PC remain unknown. We do not know what patients and families expect from PC consultations, what their experience of these consultations is, and their perceptions of whether and how PC goals of care discussions affect their treatment planning and decision-making. The proposed qualitative descriptive study will describe the perspectives of 25 HF patient- family member dyads. The specific aims include: 1) To describe the experience of patients with later stage HF and their family members referred to an acute care based PC consultation service for goals of care;and 2) To articulate patients'and family members'perceptions of the role of PC in the care of the patient's disease. Increasing our understanding of the experiences of HF patients and their family members referred for PC consultations would add substantively to the existing body of knowledge in PC and inform the development of future interventions.