Palliative care on the heart failure care team: mapping patient and provider experiences and expectations

Palliative care addresses the physical, emotional and spiritual needs of patients and their families in situations where an advanced disease is going to end a patient's life. In Canada, heart disease is one of the leading causes of death. Although quality palliative care is a right of all Canadians, very few patients with advanced heart failure receive such care. To address this situation, national heart failure care guidelines now recommend that palliative care be provided alongside other medical care for patients with advanced heart failure. However, before such recommendations can become reality, we need to better understand the complex heart failure care team in which they would take place. This team includes patients, family caregivers, specialist doctors, family doctors, nurses, social workers, homecare workers, and others, many spread over different institutions with different roles, resources and routines. Our research asks: In particular patient situations, what expectations and experiences do these team members have of palliative care for advanced heart failure? What factors currently shape their interactions to provide palliative care? We will explore these questions through a qualitative study set in three Canadian centers. We will conduct interviews with patients and members of their care team. We will also collect and analyse documents that guide care activities, including policy documents and local practice documents used in clinics. Our results will add necessary team-centred insights to the recent literature, which focuses on individual knowledge and needs but does not explore how these play out in the complex system of the HF care team. Our results will inform the next phase of our research program: the development, implementation and assessment of a palliative care integration initiative that is responsive and resilient to the team conditions in which HF care is negotiated.