Advance Directives for Health Care and Research

Abstract

Patients suffering from Alzheimer disease and other types of dementia gradually lose their decision-making capacity. Advance directives have been widely promoted as a means to maintain some control over one's life in the event of decisional incompetence. This study used data from a recent postal survey conducted in Quebec, Canada to: 1) estimate the prevalence of formal and informal advance directives for health care and research among community-dwelling older adults presumed free of cognitive deficits; and 2) characterize those who have communicated their preferences regarding health care and research participation. Prevalence rates vary from 7.4% (formal advance directives for research) to 42.3% (informal advance directives for health care). Following multivariate logistic regressions, individuals who have communicated their wishes regarding future health care were found to be older, predominantly women, and to more often know someone with cognitive impairment. Those who have expressed their wishes regarding future research involvement were more inclined to participate in research. They were also more likely to have discussed or written advance directives for health care. The finding that only a small proportion of older adults have discussed future research participation with their families points to the need to find effective ways to promote advance directives for research in this population.

Advance directives and power of attorney for health care in the oldest-old – results of the AgeQualiDe study

“…Characteristics that were investigated more frequently and more consistently found to be associated with ADs completion are rather those that lacked association in our study including older age (e.g. [9, 34, 35, 38]), female gender (e.g. [21, 35, 38]), not living in the community (e.g.…”

“…Previous studies, for example, identified completion of ADs to be also positively associated with characteristics like higher income [34], having a regular source of care [34], preparation of other planning documents [5], knowing someone with cognitive impairment [38], and having not recently experienced the death of a relative or acquaintance [32, 35]. The impact of such characteristics, however, was investigated only in few or single studies.…”

“…[9, 34, 35, 38]), female gender (e.g. [21, 35, 38]), not living in the community (e.g. [35]), and declining health/experience a serious/chronic disease (e.g.…”

The ethics of informed consent in Alzheimer disease research

“…Although advance directives are mentioned in most policy discussions, the rates of completion of research advance directives are likely to remain low. 31,32 One study found that even among a highly motivated group of people—people already engaged in a clinical research study for first-degree relatives of patients with AD and most of whom expressed a willingness to complete advance directives—only 16% completed a research advance directive during the year following the survey. 32 …”

Promoting the use of enduring powers of attorney in older adults: A literature review

“…A diagnosis of dementia was likely to prompt planning, while a more acute diagnosis such as an illness likely to result in death within a short period of time was less likely to inspire future planning, with living for the moment being the focus instead [12]. Other research showed that seeing other people experience issues with their health or cognition did promote the establishment of future plans [13,14].…”