Advance Care Planning in Advanced Heart Failure: A Relational Exploration of Autonomy

Advance care planning (ACP) is the process of understanding and sharing personal values and goals to ensure people with serious illnesses receive healthcare and treatment that is consistent with their goals and preferences. With the increasing number of treatment options available to patients living with advanced heart failure (HF), ACP is regarded as a means of preserving individual autonomy throughout the illness trajectory. Despite significant public awareness campaigns, research and interventions developed to increase participation in ACP, this practice remains severely under-utilized by those who are chronically ill. This gap in practice highlights the need for further exploration of how patients, families and healthcare providers (HCP) engage with ACP as a practice that is intended to promote patient autonomy. Therefore, the aim of this research was to gain an understanding of how patients, families and healthcare providers (HCP) understand and express their autonomy within the process of ACP. Critical qualitative multiple case study methodology, guided feminist ethics and relational autonomy, was used. Patients with advanced HF were purposefully recruited from two sites; cases were constructed using data from 19 interviews with seven patients, eight caregivers, and nine HCPs. Constructions of autonomy were developed using within and across-case analysis, guided by relational conceptualizations of autonomy. There were three key findings that resulted from this study. First, ACP is understood as external to treatment decision making within the current biomedical landscape, with a specific focus on the power of the legal model. Second, the experience of autonomy in advanced HF is incongruent with the dominant individualistic approach and instead, is a relational experience that is based on relationships of trust. Finally, ACP is influenced by interpersonal relationships and responsibilities as well as interpersonal and social power dynamics. Although ACP is considered a practice that preserves individual autonomy, interpersonal, institutional and societal level relationships were all heavily influential in this practice. Future research and practice endeavors should consider the advancement of ACP (and the enactment of autonomy) using a relational framework that acknowledges autonomy is experienced within the context of institutional, social, and interpersonal relationships.Ph.D