Background: Family 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. (shrink)

ObjectivesTo investigate which of two sources of information about an older adult’s wishes—choices made in an advance directive or proxy’s opinion—provides better insight into the older adult’s preferences measured in hypothetical clinical situations involving decisional incapacity.MethodsSecondary analyses of data collected from 157 community-dwelling, decisionally competent adults aged 70 years and over who attended a group information session on advance directives with their proxy. Older adults were invited to complete a directive introduced during the session, designed to express healthcare preferences. An (...) average of 3 months later, older adults were asked during an interview whether they would want to receive each of four medical interventions and what their goals of care would be should they develop one of three sudden health events, assuming that they had severe dementia. Proxies were asked to guess the older adult’s answers in each of the seven scenarios.ResultsEighty per cent of the older adults completed the directive. Choices they made in the directive were more in line with the preferences they stated during the interview than were their proxies’ guesses at their answers. However, concordance was relatively low, with percentages of agreement ranging from 43% to 83% across scenarios.ConclusionsFindings suggest that a directive might provide better insight into a person’s wishes than the person’s proxy, although neither source is perfect. A multifaceted decision-making model that includes both sources of information might better serve the interests of older adults who have lost the capacity to make decisions on their own.Trial registration numberISRCTN89993391; Post-results. (shrink)

BackgroundHealthcare professionals and surrogate decision-makers often face the difficult decision of whether to initiate or withhold antibiotics from people with dementia who have developed a life-threatening infection after losing decisional capacity.MethodsWe conducted a vignette-based survey among 1050 Quebec stakeholders (senior citizens, family caregivers, nurses and physicians; response rate 49.4%) to (1) assess their attitudes toward withholding antibiotics from people with dementia lacking decisional capacity; (2) compare attitudes between dementia stages and stakeholder groups; and (3) investigate other correlates of attitudes, including (...) support for continuous deep sedation (CDS) and medical assistance in dying (MAID). The vignettes feature a woman moving along the dementia trajectory, who has refused in writing all life-prolonging interventions and explicitly requested that a doctor end her life when she no longer recognizes her loved ones. Two stages were considered after she had lost capacity: the advanced stage, where she likely has several more years to live, and the terminal stage, where she is close to death.ResultsSupport for withholding antibiotics ranged from 75% among seniors and caregivers at the advanced stage, to 98% among physicians at the terminal stage. Using the generalized estimating equation approach, we found stakeholder group, religiosity, and support for CDS and MAID, to be associated with attitudes toward antibiotics.ConclusionsFindings underscore the importance for healthcare professionals of discussing underlying values and treatment goals with people at an early stage of dementia and their relatives, to help them anticipate future care decisions and better prepare surrogates for their role. Findings also have implications for the scope of MAID laws, in particular in Canada where the extension of MAID to persons lacking decisional capacity is currently being considered. (shrink)

Introduction Families of patients with dementia may need support in difficult end-of-life decision making. Such guidance may be culturally sensitive. Methods To support families in Canada, a booklet was developed to aid decision making on palliative care issues. For reasons of cost effectiveness and promising effects, we prepared for its implementation in Italy, the Netherlands and Japan. Local teams translated and adapted the booklet to local ethical, legal and medical standards where needed, retaining guidance on palliative care. Using qualitative content (...) analyses, we grouped and compared adaptations to understand culturally sensitive aspects. Results Three themes emerged: (1) relationships among patient, physician and other professionals—the authority of the physician was more explicit in adapted versions; (2) patient rights and family position—adding detail about local regulations; and (3) typology of treatments and decisions. Considerations underlying palliative care decisions were detailed (Dutch and Italian versions), and the Japanese version frequently referred to professional and legal standards, and life-prolongation was a competing goal. Text on artificial feeding or fluids and euthanasia was revised extensively. Conclusions Providing artificial feeding and fluids and discussing euthanasia may be particularly sensitive topics, and guidance on these subjects needs careful consideration of ethical aspects and possible adaptations to local standards and practice. The findings may promote cross-national debate on sensitive, core issues regarding end-of-life care in dementia. (shrink)