The accuracy of proxies when they interpret advance directives or apply substituted decision-making criteria has been called into question. It therefore became important to know if the Andalusian Advance Directive Form (AADF) can help to increase the accuracy of proxies' predictions. The aim of this research was to compare the effect of the AADF on the accuracy of proxies' predictions about patients' preferences with that gained from informative and deliberative sessions about end-of-life decision making. A total of 171 pairs of (...) patients and their proxies were randomized to three groups. The control group's answers to the Life Sustaining Preferences Questionnaire (LSPQ) were compared with their proxies' answers to the same questionnaire. In one intervention group, the patients had already completed the AADF and given it to their proxies, who used it to guide their own answers to the LSPQ. In the second intervention (discussion) group, both patients and proxies attended two educative sessions guided by trained nurses and later filled in the LSPQ. Comparisons of accuracy and other variables showed a strong association with the discussion group. The findings show that promoting communication between patients and their proxies improves the accuracy of proxies' predictions much more than isolated use of the AADF form. (shrink)

Objective: To assess the knowledge of four groups of individuals regarding who is legally authorised to consent to health care or research involving older patients.Design: A provincewide postal survey.Setting: Province of Quebec, Canada.Participants: Three hundred older adults, 434 informal caregivers of cognitively impaired individuals, 98 researchers in aging and 136 members of research ethics boards .Measurements: Knowledge was assessed through a pretested postal questionnaire comprising five vignettes that describe hypothetical situations involving an older adult who requires medical care or is (...) solicited for research. The respondent had to identify the person who is legally authorised to provide consent.Results: Nearly 80% of all respondents provided the correct answer when the hypothetical scenario depicted a person who was competent to consent or incompetent but legally represented. Knowledge was worse for the scenario describing a research situation that involved an incompetent adult without a legal guardian.Conclusion: The observed lack of knowledge raises doubts about the ability of current legislation to truly protect the rights of older adults with diminished decision making capacity. It points to the need for educational programmes aimed at increasing public awareness of the legislation put in place for those requiring special protection. (shrink)

The accuracy of proxies when they interpret advance directives or apply substituted decision-making criteria has been called into question. It therefore became important to know if the Andalusian Advance Directive Form (AADF) can help to increase the accuracy of proxies' predictions. The aim of this research was to compare the effect of the AADF on the accuracy of proxies' predictions about patients' preferences with that gained from informative and deliberative sessions about end-of-life decision making. A total of 171 pairs of (...) patients and their proxies were randomized to three groups. The control group's answers to the Life Sustaining Preferences Questionnaire (LSPQ) were compared with their proxies' answers to the same questionnaire. In one intervention group, the patients had already completed the AADF and given it to their proxies, who used it to guide their own answers to the LSPQ. In the second intervention (discussion) group, both patients and proxies attended two educative sessions guided by trained nurses and later filled in the LSPQ. Comparisons of accuracy and other variables showed a strong association with the discussion group. The findings show that promoting communication between patients and their proxies improves the accuracy of proxies' predictions much more than isolated use of the AADF form. (shrink)

Older adults who are incapable of giving informed consent to participate in dementia research require special regulatory protection. We investigated the practices of Canadian research ethics boards regarding research protocols that may involve these individuals. We also explored the opinions of REB chairs on related issues, including research advance directives and longitudinal studies. The data were collected through telephone interviews with 46 chairs from four Canadian provinces. We observed great variability in practices and opinions, as well as some instances of (...) REBs not complying with prevailing ethical and legal norms. These findings reflect, at least in part, significant regulatory gaps and related uncertainties about the terms attached to the approval of research protocols that may involve decisionally incapacitated adults. We conclude that clearer and more comprehensive regulatory criteria are required for research with this population. (shrink)