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A new study analyzes some evidence-backed tools to help substitute decision-makers make choices to honor an individual’s medical, personal and end-of-life wishes. Instead of having separate resources, though, authors say the tools should be combined.

Substitute decision-makers are family members or friends of older adults who cannot speak for themselves (such as those with dementia). Data from the study, which was published on Saturday in Journal of the American Society of Geriatrics, was derived from 25 articles published between 2003 and 2022. The team identified 17 tools that providers can use during different points in the trajectory of dementia. There wasn’t a single tool that had all the domains of caregiver decision-making strategies. Instead, they were pieced together from multiple sources.

The resources, mostly websites and brochures, support various aspects of making important choices on behalf of another person who cannot. For example, The Palliative Approach for Advanced Dementia in LTC is a pamphlet that focuses on general care and outcomes of the medical condition or disease, encouraging people to discuss end-of-life choices. Other tools the researchers evaluated helped people weigh whether to go to the hospital, consider artificial hydration, choose long-term care communities and others. 

The team said most tools, 12 out of the 17, eased uncertainty by sharing details on the advantages and disadvantages of certain decisions. About half of the tools gave people some reassurance in their decision-making by sharing scenarios of each decision made, or by providing education on treatment options. Only six of the tools met more than half of the known facilitators for substitute decision-making. The techniques aren’t meant to be used on their own, but can be part of the overall process with a healthcare provider, the authors wrote.

Existing tools may not do enough to support a caregiver’s needs when faced with making important decisions. Putting multiple tools into a single toolkit, and then considering what’s relevant to the caregiver’s situation (and that of the patient) could address the gap in support, the authors noted.