Negotiating participation in conversations about care planning between people living with mild neurocognitive disorders and their healthcare proxies: a single case analysis.

BACKGROUND AND OBJECTIVES: The time between diagnosis with a mild neurocognitive disorder (MND) and definitive loss of decisional capacity presents a window of opportunity to participate in advance care planning (ACP). To implement early planning, we need to know how to promote healthy relationships between people with MND and their healthcare proxies. Our objective is to examine how people with MND and their proxies discuss engagement in ACP and how proxies orient toward the ability and right of the person with MND to provide answers.

RESEARCH DESIGN AND METHODS: We undertake a conversation analysis of an interview related to ACP between a researcher, a person with MND and their proxy, recorded in Switzerland.

RESULTS: The way in which the proxy and the researcher orient to the person with MND changes throughout the interview. In the beginning, they recognize the person with MND as a knowledgeable and competent participant (facilitating answers or allowing her to speak first). Later, practices bypass the speakership primacy of the person with MND (correcting or describing her as dependent). The person with MND sometimes resists these stances, for example, by contradicting her proxy's answer.

DISCUSSION AND IMPLICATIONS: Our study contributes to understandings of how the epistemic rights of a person with MND to participate and provide information within interactions are constructed variably. This has implications for promoting the people with MND's individual and relational autonomy in interactions and decision-making and developing awareness-raising resources about how to improve the conditions of decisional autonomy of people with MND.