Advanced Care Planning for Persons With Dementia in Primary Care: Attitudes and Barriers Among Health-Care Professionals

Abstract

Background: Advance care planning (ACP) provides clarity on goals and preferences for future health-care decisions, the timeliness of which is critical for persons with dementia. Aim: This study assessed Primary Care Collaborative Memory Clinic (PCCMC) health-care practitioners’ desire for more education on ACP, capacity for and attitudes toward ACP, and current ACP practices in their regular family practice and in their PCCMC. Methods: Primary Care Collaborative Memory Clinic health-care professionals completed a questionnaire in which they rated their interest in learning various ACP-related topics (5-point scale: not at all to very much so), attitudes toward ACP, and the importance of and perceived degree of responsibility for ACP (5-point scale: not at all to extremely). Respondents estimated ACP completion in regular family practice and PCCMC. Results: Two hundred and sixty one surveys were completed. Mean knowledge ratings were moderate (M = 3.0) and mean ratings of interest in ACP topics were all high (median ≥ 4). Despite the perception that ACP is very important (M = 4.9) and the responsibility of PCCMCs (M = 3.7), the majority of respondents estimated that 40% or fewer patients have had ACP. Ratings of willingness to conduct ACP (M = 3.7) and comfort level (M = 3.4) were moderate but significantly exceeded ratings of ability (M = 2.9), comfort (M = 3.5), and confidence (M = 2.8). Conclusion: There was a striking disconnect between perceptions of the importance of completing ACP for persons with dementia and actual ACP completion rates. Primary Care Collaborative Memory Clinics may be in an ideal position to support ACP discussions; however, there is a need to improve health-care professionals’ knowledge and attitudes toward ACP.

Enabling Advance Care Planning in Dementia Care: A Primary Care Approach

“…A study of 261 primary care practitioners found that less than one-third of patients with dementia have had ACP discussions. 11 This rate of ACP completion is not dissimilar to that other terminal illnesses, 38 though persons with cancer are more likely to have completed ACP discussions than PLWD. 39 As a consequence PLWD may receive suboptimal end-of-care.…”

“…A previous study we conducted on the barriers to conducting ACP 11 identified the need for more education on how to conduct ACP. In this study, ACP framework users were offered several opportunities for education on ACP.…”

“…6 When persons living with dementia (PLWD) and their caregivers/ substitute decision makers (SDM) have a shared understanding of future healthcare goals and preferences, it reduces the likelihood that the person will receive medical procedures that are unwanted and of limited benefit particularly near end of life and that could result in needless suffering and unneeded health care expenditures. [7][8][9] Despite its perceived importance by older adults, family members and health professionals, 10,11 most PLWD do not have ACP discussion with their primary care providers 12,13 and family members are often unaware of their care preferences. 4 A number of barriers to ACP have been identified in the literature including time constraints, 14,15 lack of training and preparedness for ACP conversations, 16,17 and limited integration of ACP into clinical practice work flow, including resources to support ACP and mechanisms for documentation.…”

“…15 A study we conducted with 261 primary care providers identified resource needs to facilitate ACP including forms and electronic medical record templates to guide ACP and to facilitate documentation, further training on conducting ACP, and organizational support to dedicate time to ACP. 11 To meet the need for ACP and support primary care providers in conducting ACP, we developed an ACP framework tool for PLWD and their SDMs that involves a series of discussions guided by family practice health professionals. The aim of this framework is to enable a shared understanding of personal goals and preferences for future healthcare decisions so as to help guide future healthcare decisions made by SDM on the person's behalf.…”

Protocol for a Cluster Randomized Trial Comparing Team-Based to Clinician-Focused Implementation of Advance Care Planning in Primary Care

“…5,15,16 However, they may not have the time, self-efficacy, skills, or confidence needed to engage patients in ACP. [17][18][19][20] Care for patients with complex disease is increasingly provided by interprofessional teams. Yet ACP is traditionally viewed as limited to an interaction between a clinician and patient.…”