Goals of Care Conversations and Subsequent Advance Care Planning Outcomes for People with Dementia

Abstract

Background: Advance care planning has been shown to improve end of life decision-making for people with dementia. However, the impact of goals of care conversations between people with dementia and their caregivers has not been characterized. Objective: In this study, we evaluate the association between goals of care conversations and advance care planning outcomes. Methods: Retrospective advance care planning measures were collected via a questionnaire administered to 166 caregivers after the death of the person with dementia for whom they provided care. Results: At time of death, the majority of decedents with dementia had advance directives, health care agents, and previous goals of care conversations with their caregiver. Goals of care conversations were significantly associated with the perceived usefulness of advance directives, the perceived adherence to advance directives, and decedent dying at their desired place of death, but not with disagreements around end-of-life care. Conclusion: Our findings suggest that goals of care conversations are an important component of advance care planning. These findings support the development of interventions that facilitate such conversations between people with dementia and their caregivers.

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

“…The problem with this approach is that carepartner wishes may differ from those of the PWD. 14,35 Further, not all clinicians are equally equipped with the appropriate skillset to engage with and assess cognition in PWD. Hence the benefit of ACP in early-stage dementia, when communication ability is largely still preserved.…”

“…Time constraints can be one reason why clinicians may default to carepartners in ACP 28,34 and overlook direct engagement with PWD. The problem with this approach is that carepartner wishes may differ from those of the PWD 14,35 …”

“…12 To address this challenge, guidance emerged to promote ACP for PWD. 3,6,7,[13][14][15][16] However, documented ACP among PWD remains low 17 for reasons incompletely understood. 18 Further, how to optimize ACP with PWDs is insufficiently characterized and existing recommendations for conducting ACP in persons with early-stage dementia are sparse and based on small studies with limited evidence.…”

“…To address this challenge, guidance emerged to promote ACP for PWD 3,6,7,13–16 . However, documented ACP among PWD remains low 17 for reasons incompletely understood 18 .…”

Development of an Advance Care Planning Portal-Based Tool for Community-Dwelling Persons Living With Cognitive Impairment: The ACPVoice Tool

“…ACP provides patients and their care partners the opportunity to discuss their goals, values, and priorities for healthcare while also gaining a better understanding of their underlying serious illness and prognosis. [32][33][34] A recent scoping review and systematic review of high-quality ACP interventions have shown benefits regarding improving patient-physician communication, increasing patient-surrogate congruence in preferences, and decreasing anxiety, grief, posttraumatic stress, and burden for surrogate decision-makers; which are primary motivators for patients to engage in ACP. [35][36][37][38][39][40][41][42][43][44][45] Multiple barriers have been identified that hinder ACP discussions amongst PLWD and those with MCI.…”