Advance care planning for persons with ADRD: perspectives of family caregivers and trained nursing home staff
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PROJECT ABSTRACT: Advance care planning (ACP) is the process of engaging patients in conversation about their goals, values, and preferences. ACP is particularly important for vulnerable nursing home patients with Alzheimer’s Disease and related dementias (ADRD), who commonly experience complications that require decision-making about medical treatments. Family caregivers are asked to make urgent decisions on behalf of these patients, often with little preparation by poorly trained nursing home staff. There are multiple bioethical issues that arise in the context of ACP in this context including: determination of capacity to make decisions; surrogate decisional standards (best interest, substituted judgment, prior competent choice); surrogate burden; reconciling conflict between patient, family and staff; informed consent; and potential for pressure or coercion in recording preferences for medical treatments. The “Aligning Patient Preferences – a Role Offering Alzheimer’s patients, Caregivers, and Healthcare providers Education and Support (APPROACHES)” is a pragmatic cluster randomized controlled trial to test the effect of a structured advance care planning (ACP) intervention in 190 nursing homes in diverse settings. Facility staff are identified and trained to become ACP Specialists via on- line courses in ACP, with a focus on supporting patients with ADRD and their family surrogate decision- makers. Consistent with the spirit of a pragmatic trial, existing data sources are being used to evaluate the trial outcomes, including electronic health records, the Minimum Data Set 3.0, and Medicare Claims data. This Bioethics Supplement addresses a potential missed opportunity of this pragmatic trial through direct data collection with 20-30 family caregivers of vulnerable ADRD patients, through semi-structured interviews, to learn about their experiences with ACP in the setting of real-world implementation of a systematic program. Additionally, 10-15 ACP Specialists will also be interviewed regarding their experiences facilitating conversations with family caregivers. Findings will provide important information about ethical issues related to implementing ACP in the nursing home setting to guide future research, implementation, and policy, including the continued tailoring of APPROACHES in anticipation of full-scale implementation at the conclusion of the trial.
