Multidisciplinary Clinicians and the Relational Autonomy of Persons with Neurodegenerative Disorders and an Advance Care Plan: A Thematic Analysis

Abstract

People diagnosed with neurodegenerative disorders often grapple with threats to their agency, prompting some to engage in advance care planning. Advance care plans are intended to protect autonomy by helping patients receive goal-consistent healthcare. Accordingly, there is a need to better understand factors associated with hospital doctors' application of advance care plans to treatment decisions of this patient cohort. The purpose of this study was to explain the recommendations of multidisciplinary hospital-based clinicians about the benefits of advance care plans for people diagnosed with neurodegenerative disorders, and the elements that influence how doctors apply such plans. Using a constructivist grounded theory informed thematic analysis, semi-structured interviews were conducted with purposively and theoretical sampled hospital-based clinicians: 16 doctors, six registered nurses and 10 allied health clinicians who self-reported having experience delivering healthcare to people with neurodegenerative disorders and an advance care plan. Allied health and nurse data helped to inform questions posed to doctors. Data were inductively analysed using open and focused coding. Analysis revealed two main themes: recommending agency through advance care plans; and limiting agency through advance care plans. These themes formed the basis of the core category: patient agency. All clinicians held positive attitudes towards advance care plans as a means to preserve patient voices and alleviate family of responsibility. However, the extent to which doctors shared decisions with family revealed a tension between individualistic agency associated with advance care plans and relational autonomy perceived by doctors as appropriate. Although doctors expressed positive attitudes towards advance care plans, they typically practiced relational autonomy wherein they partner with family in contemporaneous healthcare decision on patients' behalf. Accordingly, the healthcare preferences of hospitalised, incompetent people with neurodegenerative disorders are balanced against judgements of both doctors and family.