Communication of patients' and family members' ethical concerns to their healthcare providers.

BACKGROUND: Little is known about communication between patients, families, and healthcare providers regarding ethical concerns that patients and families experience in the course of illness and medical care. To address this gap in the literature, we surveyed patients and family members to learn about their ethical concerns and the extent to which they discussed them with their healthcare providers. METHODS: We surveyed adult, English-speaking patients and family members receiving inpatient care in five hospitals in the Washington DC-Baltimore metropolitan area from July 2017 to March 2020. Descriptive statistics were used to determine the frequency, comfortableness, and helpfulness of discussions regarding ethical concerns experienced when sick or receiving medical care. Univariable and multivariable stepwise logistic regression models were used to identify associations between healthcare provider and respondent characteristics and attitudes and (1) the likelihood of speaking to a healthcare provider about their ethical concern and (2) their level of comfort during these discussions. RESULTS: Of 468 respondents who experienced ethical issues, 299 (64%) reported discussing the situation with a member of their healthcare team; 74% (197/265) of respondents who had such a discussion found the discussion comfortable, and 77% (176/230) of respondents found the discussion helpful. To make discussions more comfortable and helpful, respondents proposed suggestions in open-ended responses involving (1) content and quality of communication; (2) positive healthcare provider qualities such as empathy, open-mindedness, knowledge, honesty, and trustworthiness; and (3) other contextual factors including having adequate time and available resources. CONCLUSIONS: Patients and families often have ethical concerns that they discuss with clinicians, and they want clinicians to be routinely receptive and attentive to such discussions.

Resource Limitation and "Forced Irremediability" in Physician-Assisted Deaths for Nonterminal Mental and Physical Conditions: A Survey of the US Public.

BACKGROUND: Physician-assisted death (PAD) for people with nonterminal illnesses (PAD-NT) is a controversial practice legal in some countries and increasingly debated in others, including the United States. A major concern about legalization of PAD-NT is that a lack of resources may drive some with mental illnesses or physical disabilities to seek PAD. OBJECTIVE: To assess US public opinion on PAD-NT under conditions of resource limitation. METHODS: The authors surveyed 2139 US adults matched to the US population in sex, age, race/ethnicity, education, political affiliation, and income. After giving their opinions regarding terminal PAD and PAD-NT in response to traditional PAD survey questions, respondents were randomly presented one of 4 scenarios of persons with nonterminal conditions requesting PAD-NT who lacked adequate resources to maintain their quality of life. The type of resources lacking (social or health care) and medical condition (mental or physical disability) were varied. Respondents' views regarding PAD-NT for the scenario specifically and legalization generally were then reassessed. RESULTS: At baseline, 55.4% of respondents supported legalizing terminal PAD, and 36.9% supported legalizing PAD-NT. After analyzing the scenarios, 28.2% (range 18.6%-39.7%) agreed/strongly agreed with legalizing PAD-NT generally and 23.7% (15.2%-33.7%) agreed/strongly agreed with PAD-NT for the instance depicted, with mental illness scenarios receiving much lower support; respondents' comments suggest devaluation of life with physical disability versus with mental illness. Being politically liberal, not religious, and assigned physical disability scenarios were associated with greater support for PAD-NT in multivariable analyses. CONCLUSIONS: A minority of the US public supports PAD-NT in the context of inadequate resources, with much lower support for PAD-NT for mental illness than for physical disability, suggesting that PAD-NT policy debates and future research should address the issue of whether sufficient resources must be available to potential requestors of PAD-NT.

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.