Family Caregiver Perspectives on Advance Care Planning Discussions for Residents With Dementia Led by Trained Nursing Home Staff: Insights From the APPROACHES Project

Abstract

Objectives: Advance care planning (ACP) is essential in supporting family caregivers of nursing home residents with dementia, but nursing home (NH) staff often lack training to engage in proactive ACP discussions. An embedded pragmatic clinical trial was conducted to test a structured ACP training for NH staff called the ACP Specialist Program. This study explores family caregivers' experiences related to discussions with the ACP Specialist, as well as needs and challenges in making ACP decisions for NH residents living with dementia.

Design: Qualitative interviews.

Setting and participants: 28 family caregivers of NH residents with dementia who had engaged in an ACP discussion with the ACP Specialist in the prior 3-month period.

Methods: Interviews were conducted, transcribed, and then coded by the research team using qualitative descriptive methods.

Results: Thirteen original codes were distilled into 8 codes reflecting 2 broad themes. The first theme focuses on family caregiver experiences as the surrogate decision maker and includes the caregiver's understanding of the surrogate decision-maker role; comfort with the role; challenges related to the role; and involvement of other family members. The second theme focuses on caregiver perspectives of ACP Specialists and the ACP discussion. It includes descriptions of the types of decisions in ACP conversations; the experience of support from the ACP Specialist; the role of the ACP Specialist as part of the NH team; and the role of other NH staff and clinicians in ACP.

Conclusion and implications: Family caregiver experiences were positive overall because they believed that the resident's situation, preferences, and needs were known and acted on by the staff. Their reports of needs and challenges reinforce the importance of ACP training programs like the ACP Specialist that promote routine conversations in the NH to support family decision makers for persons living with dementia.

Keywords: Pragmatic clinical trial; advance directives; code status; ethics; primary palliative care; surrogate decision making.