Clarifying Values and Preferences for Care Near the End of Life: The Role of a New Lay Workforce

Abstract

Background Community health workers (CHWs) can engage elderly persons in advance care planning (ACP) conversations. Objective We report how trained CHWs used Go Wish cards (GWR cards) to identify patients’ highest priority preferences and evaluated whether engaging in ACP conversations was associated with subsequent health care utilization. Design A one-year long, pre-post longitudinal design was used to evaluate our educational intervention using mixed-methods. Patients 392 patients (mean of 73.3 years, 82% women, 48% African American, 43% Caucasian) enrolled in the Aging Brain Care (ABC) program and participated in ACP discussions with CHWs. Intervention We expanded the role of the ABC’s CHW, who work directly with individuals and caregivers during home visits to monitor bio-psycho-social needs, to include ACP conversations. Main Measures The CHWs received ACP training, practice with tools such as GW R cards, and support from an electronic health record (EHR) clinical decision support tool. Quantitative measures of patients’ ACP preferences and health care utilization were abstracted from the EHR. Qualitative data about patients’ perceptions of CHWs in facilitating ACP discussions was obtained through semi-structured interviews. Results Eighty-six patients’ data indicated that they had engaged in a preferences-for-care process using GWR cards. The top-three card choices by patients was attending to spirituality and religious concerns, preparing for end of life, and maintaining personal wholeness. Conclusion CHWs were able to effectively engage in ACP conversations with patients and GWR cards were a positive way to stimulate discussion of issues previously undiscussed.

Using Implementation Science to Further the Adoption and Implementation of Advance Care Planning in Rural Primary Care

“…It is unknown how this factor impacts their knowledge of ACP, or their ability or proficiency in executing the steps of ACP. Effective interventions exist to increase other healthcare providers’ knowledge and skills and their intent to engage in ACP (Litzelman, Inui, Schmitt‐Wendholt, et al, ). Whether these would be sufficient to meet all the barriers faced by rural primary care providers is unknown.…”

Exploring Community-Dwelling Older Adults’ Considerations About Values and Preferences for Future End-of-Life Care: A Study from Sweden

“…While individual consideration of future EoL issues is also likely to take place in Sweden, the lack of systematic practice motivates consideration of the Swedish context itself as ACP-naive on a collective level. Based on previous international research and adapted to the Swedish context, the approach to ACP in this research project: “Advance care planning in Sweden” (SweACP), is based on three cornerstones as it is (a) conversation-based ( Sudore & Fried, 2010 ; Vearrier, 2016 ), (b) initiated early ( Howard et al, 2015 ; Zwakman et al, 2018 ), and (c) community-based, that is, taking place outside the health and social care systems ( Litzelman et al, 2017 ; Somes et al, 2018 ).…”

Perceptions of trained laypersons in end-of-life or advance care planning conversations: a qualitative meta-synthesis

“…This study offers insight into the benefits and challenges of laypersons’ engagement in advance care planning conversations. While other research studies focus on advance directive documentation, this study describes how engaging with seriously ill patients or peers in advance care planning conversations can be a challenging yet rewarding experience from the layperson’s perspective [ 31 ]. A future analysis should also include perspectives of the peer/patient and family caregivers [ 32 ].…”

“…Future work should include grey literature as this literature may have insights from additional settings, making the results of a meta-synthesis more broadly applicable. Additionally, the scope of this study did not include quantitative outcomes related to advance care planning programs involving trained laypersons [ 31 ]. An additional limitation to the study is that there was no layperson on the research team contributing to the analysis of themes.…”