Are Canadians Providing Advance Directives about Health Care and Research Participation in the Event of Decisional Incapacity?

Bravo, Gina; Dubois, Marie‐France; Cohen, Carole; Wildeman, Sheila; Graham, Janice E.; Painter, Karen; Bellemare, Suzanne

doi:10.1177/070674371105600404

Cited by 19 publications

(22 citation statements)

References 35 publications

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“…While information about this topic is scant and relatively outdated, studies examining these issues consistently show low prevalence rates ( 18 , 21 , 27 , 28 ), and three main correlates of ARD: previous research experience, health care directives and the level of risk or side effects involved in the research protocol. Finally, it should be noted that there is no knowledge at all regarding these issues either in Germany or in Israel.…”

Section: Introductionmentioning

confidence: 99%

Practical and Ethical Aspects of Advance Research Directives for Research on Healthy Aging: German and Israeli Professionals’ Perspectives

Werner

Schicktanz

2018

Front. Med.

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BackgroundHealthy aging is the development and maintenance of optimal cognitive, social and physical well-being, and function in older adults. Preventing or minimizing disease is one of the main ways of achieving healthy aging. Dementia is one of the most prevalent and life-changing diseases of old age. Thus, dementia prevention research is defined as one of the main priorities worldwide. However, conducting research with persons who lack the capacity to give consent is a major ethical issue.ObjectiveOur study attempts to explore if and how advance research directives (ARDs) may be used as a future tool to deal with the ethical and practical issues in dementia research.MethodWe conducted focus groups and in-depth interviews with German and Israeli professional stakeholders from the fields of gerontology, ethics, medical law, psychiatry, neurology and policy advice (n = 16), and analyzed the main topics discussed regarding cross-national similarities and controversies within the groups, as well as across the two national contexts.ResultsWhile both countries are in the midst of a developmental process and have recognized the importance and need for ARD as a tool for expanding healthy aging, Germany is in a more advanced stage than Israel because of the EU regulation process, which indicates the influence of international harmonization on these research-related ethical issues. Consensual themes within the qualitative material were identified: the need for a broader debate on ARD, the ethical importance of autonomy and risk–benefit assessment for ARD implementation, the role of the proxy and the need for the differentiation of types of dementia research. Controversies and dilemmas aroused around themes such as the current role of IRBs in each country, the need for limits, and how to guaranty safeguarding and control.DiscussionImplementing a new tool is a step-by-step procedure requiring a thorough understanding of the current state of knowledge as well as of the challenges and hurdles ahead. As long as improving quality of life and promoting autonomy continue to be core elements in the process of healthy aging, efforts to advance knowledge and solve dilemmas associated with the implementation of ARD is of the utmost importance.

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Section: Introductionmentioning

confidence: 99%

Practical and Ethical Aspects of Advance Research Directives for Research on Healthy Aging: German and Israeli Professionals’ Perspectives

Werner

Schicktanz

2018

Front. Med.

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“…Despite widespread professional and public endorsement of ADs for health care, still too few people actually execute them or even discuss future treatment wishes with loved ones or healthcare practitioners [2,18,22,24,25]. The most common reasons include trusting family members to make the right decision when the time comes, the tendency to defer end-of-life planning until facing a life-threatening illness, a lack of knowledge about ADs, and limited access to needed forms [11].…”

Section: Introductionmentioning

confidence: 99%

“…The most common reasons include trusting family members to make the right decision when the time comes, the tendency to defer end-of-life planning until facing a life-threatening illness, a lack of knowledge about ADs, and limited access to needed forms [11]. According to our own survey [25], even fewer have voiced their wishes in relation to research involvement. Interestingly, survey participants who had done so were more likely to have conveyed their preferences for care.…”

Section: Introductionmentioning

confidence: 99%

Promoting advance planning for health care and research among older adults: A randomized controlled trial

et al. 2012

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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

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“…As noted, many people do not give advance directive plans about their participation in research after their decision-making capacity is lost [48] Aaronson and Burman [44] Hall et al [1] Assess the quality and completeness of the charts that will be used for data collection *Note: Authors of three studies reported that, the quality of the charts was excellent [28,29,34]. However, the quality of charts should not always be assumed…”

Section: Keay Et Al [40]mentioning

confidence: 99%

Revisiting Retrospective Chart Review: An Evaluation of Nursing Home Palliative and End-of-Life Care Research

Wickson-Griffiths¹,

Kaasalainen

Ploeg³

et al. 2014

PMCOA

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Are Canadians Providing Advance Directives about Health Care and Research Participation in the Event of Decisional Incapacity?

Abstract: Advance planning has increased over the last 2 decades in Canada. Nonetheless, further efforts are needed to encourage Canadians to voice their health care and research preferences in the event of incapacity. Physicians are well situated to promote advance planning to Canadians.

Cited by 19 publications

References 35 publications

Practical and Ethical Aspects of Advance Research Directives for Research on Healthy Aging: German and Israeli Professionals’ Perspectives

Practical and Ethical Aspects of Advance Research Directives for Research on Healthy Aging: German and Israeli Professionals’ Perspectives

Promoting advance planning for health care and research among older adults: A randomized controlled trial

Revisiting Retrospective Chart Review: An Evaluation of Nursing Home Palliative and End-of-Life Care Research

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