title: Clarifying Values and Preferences for Care Near the End of Life: The Role of a New Lay Workforce.
abstract: Community health workers (CHWs) can engage elderly persons in advance care planning (ACP) conversations. We report how trained CHWs used Go Wish cards (GWRcards) to identify patients' highest priority preferences and evaluated whether engaging in ACP conversations was associated with subsequent health care utilization. A one-year long, pre-post longitudinal design was used to evaluate our educational intervention using mixed-methods. 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. 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. The CHWs received ACP training, practice with tools such as GWRcards, 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. Eighty-six patients' data indicated that they had engaged in a preferences-for-care process using GWRcards. The top-three card choices by patients was attending to spirituality and religious concerns, preparing for end of life, and maintaining personal wholeness. CHWs were able to effectively engage in ACP conversations with patients and GWRcards were a positive way to stimulate discussion of issues previously undiscussed.
authors.affiliation: Regenstrief Institute, Inc., 1101 West Tenth Street, Indianapolis, IN, 46202-4800, USA. dklitzel@iu.edu.|Department of Medicine, IU School of Medicine, Indianapolis, IN, USA. dklitzel@iu.edu.
authors.forename: Debra K
authors.initials: DK
authors.lastname: Litzelman
authors.affiliation: Regenstrief Institute, Inc., 1101 West Tenth Street, Indianapolis, IN, 46202-4800, USA.|Department of Medicine, IU School of Medicine, Indianapolis, IN, USA.
authors.forename: Thomas S
authors.initials: TS
authors.lastname: Inui
authors.affiliation: Regenstrief Institute, Inc., 1101 West Tenth Street, Indianapolis, IN, 46202-4800, USA.
authors.forename: Kathleen M
authors.initials: KM
authors.lastname: Schmitt-Wendholt
authors.affiliation: Indiana Clinical and Translational Sciences Institute, Indiana University Center for Healthcare Innovation and Implementation Science, Indianapolis, IN, USA.
authors.forename: Anthony
authors.initials: A
authors.lastname: Perkins
authors.affiliation: Indiana University Health, Indianapolis, IN, USA.
authors.forename: Wilma J
authors.initials: WJ
authors.lastname: Griffin
authors.affiliation: Department of Medicine, IU School of Medicine, Indianapolis, IN, USA.
authors.forename: Ann H
authors.initials: AH
authors.lastname: Cottingham
authors.affiliation: Indiana University Health, Indianapolis, IN, USA.|Charles Warren Fairbanks Center for Medical Ethics, Indianapolis, IN, USA.
authors.forename: Steven S
authors.initials: SS
authors.lastname: Ivy
mesh_terms: D032722:Advance Care Planning; D000368:Aged; D003150:Community Health Workers; D005260:Female; D006801:Humans; D008297:Male; D057240:Patient Preference; D011634:Public Health / Q000379:methods*; D013727:Terminal Care
keywords: Clarifying end-of-life goals; Community health worker; End-of-life conversations