Advance Care Planning for Patients with Heart Failure: An Exploration of Relational Autonomy in the Context of Future Care Decision Making (TH311B)

Abstract

•Describe the background of advance care planning in heart failure management.•Outline the design of a critical qualitative multiple case study approach and the role of relational autonomy.•Compare the conceptualization of advance care planning in clinical practice compared with the experience of heart failure patients, caregivers, and healthcare providers. Advance care planning (ACP) is the process of understanding and sharing personal values and goals to ensure people with serious illnesses receive medical care that is consistent with their preferences. With the increasing complexity of medical options available to patients, ACP is regarded as a means of preserving individual autonomy. Despite significant public awareness and interventions developed to increase ACP participation, this practice remains under-utilized by those with chronic illnesses. This gap in practice highlights the need for further understanding of how people understand their autonomy in relation to ACP. This study aimed to develop an understanding of how patients, families and healthcare providers (HCP) understand, experience and express their autonomy through the process of ACP. Qualitative multiple case study design. Patients with advanced heart failure were purposefully recruited from two study sites; cases were constructed using data from 19 semi-structured interviews with seven patients, eight caregivers, and nine HCP, as well as 25 hours of observational data, field notes and document analysis. Constructions of autonomy were developed using within and across-case analysis. Patients often equated ACP with palliative care and understood it as occurring only after every treatment option had been explored. ACP was also equated with code status documentation by both patients and HCPs, a reality constructed through policies and laws surrounding documentation and consent. Treatment decision making was viewed as external to individual agency: clinical guidelines and candidacy criteria dictated which decisions were relevant. HCPs', patients' and family members' experiences of decision making did not always align with traditional individualistic autonomy. Interpersonal, institutional and societal level relationships were all heavily influential in supporting ACP in the context of advanced illness.