Educational tools developed for this study will assist healthcare providers in helping older adults to record their wishes in advance. Clients must be informed of the challenge of making substitute decisions and of the need to discuss the amount of leeway the proxy should have in interpreting expressed wishes.
BackgroundFamily members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of substitute decision-making and increasing the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making.Methods/DesignDyads (n = 240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled My Preferences that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about My Preferences. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the end of the intervention and 6 months later to assess improvement in predictive accuracy and cost savings, if any. Copies of completed guides are made at the time of these assessments.DiscussionThis study will determine whether the tested intervention guides proxies in making decisions that concur with those of older adults, motivates the latter to record their wishes in writing, and yields savings for the healthcare system.Trial RegistrationISRCTN89993391
challenging to organize. Results suggest that the assistance provided during the group information session was sufficient to motivate and guide participants in recording their preferences. Whether interacting with the facilitator better prepares proxies to make substitute decisions on behalf of an incompetent older adult should be investigated in the future, with attention paid to healthcare and research decisions. ADs completed in isolation have been found to provide little guidance to surrogates who are later called upon to make substitute decisions. 10 Timely access by surrogates to completed ADs is also known to be problematic. Older adults and proxies attended the group information session. Further research is needed to determine whether this feature of the intervention allows proxies to gain better insight into recorded wishes.
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