Advance Care Plans and the Potentially Conflicting Interests of Bedside Patient Agents: A Thematic Analysis

AIM: People diagnosed with a neurodegenerative disorder often contend with a threat to independence and control, leading some to complete an advance care plan. Advance care plans are commonly associated with treatment limitations; however, key patient agents (such as doctors, allied health, nurses and family) may instead make temporal, best interests or good medical practice decisions on behalf of the patient. Accordingly, there is a need to better understand ancillary decision-maker’s perspectives, particularly of doctors. PURPOSE: To explain how the potentially conflicting interests of bedside patient agents operates as a factor which influences doctors’ application of advance care plans of people with a neurodegenerative disorder. PARTICIPANTS AND METHODS: Using a constructivist grounded theory informed thematic analysis, 38 semi-structured interviews were conducted with hospital-based doctors, allied health, nurses and family of people with a neurodegenerative disorder who had an advance care plan. Data were inductively analysed using open and focused coding. RESULTS: Analysis revealed two main themes: dynamics of discerning best interests; and avoiding conflict. Rather than applying advance care plans, doctors largely involved families to attempt best interests decision-making partnerships on patients’ behalf. Bedside agents demonstrated significant intra and interpersonal challenges associated with their roles as patient agents. Doctors appeared protective of families and patients with neurodegenerative disorder. CONCLUSION: Although bedside agents value advance care plans, doctors often favour temporal healthcare decisions in consultation with family. We suggest there are limitations to the effectiveness of advance care plans in practice, with application typically only occurring close to death. Despite the intentions of advance care planning, bedside agents may still experience considerable dissonance.