The effect of a family-centered advance care planning intervention for persons with cognitive impairment and their family caregivers on end-of-life care discussions and decisions

Abstract

Advanced care planning (ACP) includes advance directives (AD), which can specify provisions for palliative care and types of life-sustaining treatments for an individual requiring end-of-life (EoL) care. ACP for persons in the early stages of cognitive decline can decrease anxiety and conflict for family members needing to make decisions about EoL-care, which is especially critical for family caregivers (FCGs) if they play a role as a surrogate regarding healthcare decisions. However, ACP for persons with cognitive impairment (PWCIs) is often overlooked. This study explored the effects of a family-centered ACP intervention on decisions about EoL-care, life-sustaining treatment decisions, and discussions of related topics among PWCIs and FCGs. The study was conducted in outpatient clinics of regional teaching hospitals in northern Taiwan. Participants were dyads consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. The family-centered ACP intervention was provided by an ACP-trained senior registered nurse. A one-group, pretest–posttest design was used to evaluate the effect of the intervention on 44 dyads. Four structured questionnaires collected data regarding familiarity with ACP, intention to engage in ACP, participation in personal discussions between the dyads about ACP, and consistency between PWCIs and FCGs for decisions about life-sustaining treatments at EoL. Paired t, Kappa, and McNemar tests were used to compare differences between pre-intervention data (pretest) and post-intervention data (posttest). There were significant increases in familiarity with ACP, components of ACP, and the number of topics PWCIs and FCGs personally discussed surrounding EoL-care decisions. There was no change for either group in wanting to have a formal ACP consultation and only modest increases in consistency between PWCIs and FCGs for life-sustaining treatment decisions after completion of the family-centered ACP intervention. Clinicians caring for PWCIs should incorporate family-centered ACP interventions and support ongoing discussions about life-sustaining medical treatments to ensure their preferences regarding EoL-care are respected. The accessibility and availability of consultations about ACP should also be provided.