Assessing Public's Attitudes Towards Euthanasia and Assisted Suicide of Persons With Dementia Based on Their Advance Request: An Experimental Survey of US Public.

OBJECTIVE: Advance request euthanasia and/or assisted suicide (AR-EAS) in persons with dementia is highly controversial. Results of typical public opinion surveys may not reflect the ethical and practical issues involved in the practice. We tested the impact of incorporating such issues in the assessment of public attitudes toward legalization of AR-EAS. DESIGN: Online survey (April 27-30, 2020) of 1,711 adults recruited via CloudResearch PrimePanel, matched to U.S. population in age, sex, race and/or ethnicity, education, household income, and political affiliation. After assessing initial attitudes toward legalization of AR-EAS, respondents viewed one of six randomly assigned scenarios depicting an ethical or practical issue in AR-EAS; acceptability of EAS in each scenario as well as general attitudes toward AR-EAS legalization were then elicited. RESULTS: Approximately 54.4% initially agreed/strongly agreed with AR-EAS legalization; agreement was associated with lower dementia quality-of-life rating, younger age, not being religious, liberal politics, and $75,000-$99,999 income range. After viewing the scenarios, a minority in each scenario arm found the AR-EAS depicted acceptable (20.7%-39.1%; p<0.0001 for all six arms, in comparison with initial legalization question response). Support (agree/strongly agree) for AR-EAS legalization after reading specific scenarios was generally lower (range 36.5%-49.3%; p≤0.0002); change in support for legalization was associated with initial support for legalization, acceptability of AR-EAS in the scenarios, dementia quality-of-life ratings, and race. CONCLUSION: Informing the public of the ethical and practical complexities in AR-EAS may have significant effects on their attitudes toward legalization. Future surveys should ensure that the public's views reflect sufficient exposure to these complexities.

Sharing Ethics Consultation Notes With Patients Through Online Portals.

Many health systems have adopted online patient portals that allow patients to easily view their health records. As a result, notes written by health care professionals are increasingly read by both clinicians and patients, and clinicians in specialties that routinely involve sensitive information (eg, mental health care) have had to construct notes in a manner that respectfully promotes therapeutic relationships with patients. This article discusses whether ethics consultation services should share notes with patients through online portals and ways to handle practical implementation challenges. In support of sharing notes, this article appeals to an existing right that patients have to access their health record and suggests that sharing ethics consultation notes might help patients understand key clinical ethics concepts and practices.

Euthanasia and Assisted Suicide of Persons With Dementia in the Netherlands.

OBJECTIVE: To describe the characteristics of persons with dementia receiving euthanasia/assisted suicide (EAS) and how the practice is regulated in the Netherlands. DESIGNS: Qualitative directed content analysis of dementia EAS reports published by the Dutch euthanasia review committees between 2011 and October 5, 2018. RESULTS: Seventy-five cases were reviewed: 59 concurrent requests and 16 advance requests. Fifty-three percent (40/75) were women, and 48% (36/75) had Alzheimer disease. Advance request EAS patients were younger, had dementia longer, and more frequently had personal experience with dementia. Some concurrent request EAS patients were quite impaired: 15% (9/59) were deemed incompetent by at least one physician; in 24% (14/59), patients' previous statements or current body language were used to assess competence. In 39% (29/75), patients' own physicians declined to perform EAS; in 43% (32/75), the physician performing EAS was new to them. Physicians disagreed about patients' eligibility in 21% (16/75). All advance request and 14 (25%) concurrent request patients had an advance euthanasia directive but the conditions of applicability often lacked specificity. In 5 of 16 advance request EAS and 2 of 56 concurrent request EAS cases, EAS procedure was modified (e.g., premedication). Twenty-five percent (4/16) of advance request cases did not meet legal due care criteria, in particular the "unbearable suffering" criterion. CONCLUSIONS: Advance and concurrent request EAS cases differ in age, duration of illness, and past experience. Advance request EAS cases were complicated by ambiguous directives, patients being unaware of the EAS procedure, and physicians' difficulty assessing "unbearable suffering." Notably, some concurrent request patients were quite impaired yet deemed competent by appeals to previous statements.