Identification and Synthesis of End-of-Life Decision-making Measures: A Scoping Review

Patricia Bucko¹Miriam Novack^1*Emily Ho¹Berivan Ece¹Evan Burleigh²Molly Mather³Tatiana Karpouzian-Rogers⁴Elizabeth M. Dworak¹Sarah Pila¹Zahra Hosseinian¹S. Duke Han⁵Peter A Lichtenberg⁶Richard C Gershon¹Sandra Weintraub⁷

• ¹Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, United States
• ²Department of Psychology, Northwestern University, Evanston, Illinois, United States
• ³Mesulam Center for Cognitive Neurology and Alzheimer’s Disease, Department of Psychiatry and Behavioral Sciences, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, United States
• ⁴Department of Psychiatry and Behavioral Sciences, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, United States
• ⁵Department of Psychology, University of Southern California, Los Angeles, California, United States
• ⁶Institute of Gerontology, Wayne State University, Detroit, Michigan, United States
• ⁷Department of Medical Social Sciences, Department of Psychiatry and Behavioral Sciences, Mesulam Center for Cognitive Neurology and Alzheimer’s Disease, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, United States

Background: Cognitive impairment (CI) as well as related conditions are known to affect decisionmaking (DM), particularly in older adult populations. The intersection of CI and DM ability is crucial in end-of-life (EoL) care, where there is a confluence of heterogenous preferences and values often across different constituents (e.g., health care providers, family members, proxies). Standardized questionnaires are necessary to characterize patients' EoL decisions, preferences, and readiness, but the extent of available measures is widely unknown. Objective: This scoping review aims to summarize the current state of the literature regarding EoL decision-making measures. This effort supports the development of the Advancing Reliable Measurement in Cognitive Aging and Decision-making Ability (ARMCADA) research initiative which seeks to develop a decision-making battery for use in older adults. Methods: Following the O'Malley and Arksey (2005) framework, we conducted a scoping review for multiple domains of DM in studies published between January 2018 and November 2023. Any paper that assessed or characterized DM in participants 45 years and older was extracted for DM domain, population characteristics, and DM measures.Results: An initial search identified 16,286 articles, of which 705 were classified as assessing DM. Of those, 34 articles included measures of the EoL domain, and 28 unique measures were identified. The MacArthur Competence Assessment Tool for Treatment (MacCAT-T), the Decisional Conflict Scale (DCS), and the Decision Regret Scale (DRS) were the only assessments used more than once in the scoping review. Many papers assessed clinical populations including those with CI/dementia (12%), cancer (24%), and chronic conditions (16%). Findings show that measures used at end-of-life emphasize decisional preferences, efficacy, and conflict.Overall, this review highlights the lack of DM ability measures that can assess older adults' capacity to make decisions regarding EoL specific issues (e.g. life-sustaining treatment, pain management).