Advance care planning with people living with dementia: ethical considerations of physicians in the United States and the Netherlands

Objectives Advance care planning (ACP) is important but complex with people living with dementia. This study aims to explore ethical considerations of physicians around ACP for dementia in two high-income countries (United States and the Netherlands). Methods In this qualitative study, semi-structured interviews were conducted with Dutch and American physicians from specialties that provide end-of-life care for people with living dementia. Their considerations regarding ACP for people living with dementia were solicited after short animation video vignettes on two approaches to ACP, one focused on concrete treatment orders, and the other on setting global care goals. Interview transcripts were analyzed using thematic analysis with elements of reflexive thematic analysis to identify ethical considerations. Results Interviews with 50 Dutch physicians and 47 American physicians and 3 nurse practitioners generated three themes of ethical considerations: 1) Respecting the autonomy of the person with dementia, 2) Rationality as the basis for decisions and subsequent actions, and 3) Minimizing burden and suffering. Discussion The complexity of ACP for people living with dementia is reflected in the challenges within each ethical consideration and the tensions between them, especially between autonomy and rationality. We recommend an approach to ACP that balances the ethical considerations, focusing on the values of the people living with dementia and allowing flexibility in future decision-making to take the current best interest of the person into account.