US clinicians' perspectives on advance care planning for persons with dementia: A qualitative study

Abstract

Background: Although advance care planning (ACP) for persons with dementia (PWD) can promote patient-centered care by aligning future healthcare with patient values, few PWD have documented ACPs for reasons incompletely understood. The objective of this paper is to characterize the perceived value of, barriers to, and successful strategies for completing ACP for PWD as reported by frontline clinicians.

Methods: Qualitative study using semi-structured interviews (August 2018-December 2019) with clinicians (physicians, nurse practitioners, nurses, social workers) at 11 US health systems. Interviews asked clinicians about their approaches to ACP with PWDs, including how ACP was initiated, what was discussed, how carepartners were involved, how decision-making was approached, and how decision-making capacity was assessed.

Results: Of 75 participating generalist and specialty clinicians from across the United States, 61% reported conducting ACP with PWD, of whom 19% conducted ACP as early as possible with PWD. Three themes emerged: value of early ACP preserves PWD's autonomy in cases of differing PWD carepartner values, acute medical crises, and clinician paternalism; barriers to ACP with PWD including the dynamic and subjective assessment of patient decision-making capacity, inconsistent awareness of cognitive impairment by clinicians, and the need to balance patient and family carepartner involvement; and strategies to support ACP include clarifying clinicians' roles in ACP, standardizing clinicians' approach to PWD and their carepartners, and making time for ACP and decision-making assessments that allow PWD and carepartner involvement regardless of the patients' capacity.

Conclusions: Clinicians found early ACP for PWD valuable in promoting patient-centered care among an at-risk population. In sharing their perspectives on conducting ACP for PWD, clinicians described challenges that are amenable to changes in training, workflow, and material support for clinician time. Clinical practices need sustainable scheduling and financial support models.