Advance Care Planning in Advanced Heart Failure: The Illusion of Individual Autonomy

Advance care planning involves understanding and sharing values and goals to ensure people with serious illnesses receive treatment that is consistent with their preferences. With the growing treatment options available to patients living with advanced heart failure, advance care planning is regarded as a means of preserving individual autonomy. Despite significant public awareness campaigns, research, and interventions to increase advance care planning, it remains under-utilized in heart failure care. The aim of this research was to gain an understanding of how patients with heart failure understand and express their autonomy through the process of advance care planning. Critical qualitative multiple-case study methodology was used. Cases were constructed using data from 19 interviews with seven patients, eight caregivers, and nine healthcare providers from across two institutions. Constructions of autonomy were developed using within- and across-case analysis guided by a relational conception of autonomy based in feminist ethics. There were three key findings: (1) advance care planning is understood as external to treatment decision-making within the current biomedical landscape; (2) the experience of autonomy in advanced heart failure is incongruent with the dominant individualistic approach; and (3) advance care planning is influenced by interpersonal relationships and responsibilities as well as interpersonal and social power dynamics. Although advance care planning is considered a practice that preserves individual autonomy, interpersonal, institutional, and societal level relationships were all heavily influential in this practice. Future research should consider the advancement of advance care planning, and the enactment of autonomy, using a relational framework that acknowledges autonomy is shaped by institutional, social, and interpersonal relationships.