Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates

Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates

Schneider K; Roll S; Tissen-Diabate T; Buhrer C; Garten L

JAMA Network Open

2024

Infant Newborn; Decision Making; Germany; terminal care; adult; female; human; major clinical study; male; newborn; quality of life; aged; interview; physician; life sustaining treatment; shared decision making; cross-sectional study; medical ethics; middle aged; adolescent; parent; conference paper; decision making; euthanasia; treatment withdrawal; socioeconomics; attitude to health; sociodemographics; comprehension; German (language)

Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the general public have not yet been investigated. Objective: To assess (1) attitudes in the general public toward euthanasia and withdrawal of life-prolonging treatment in neonates with severe life-limiting conditions, (2) knowledge of current German recommendations, and (3) values in the German society regarding ethical issues and proxy decisions at the beginning of life. Design, setting, and participants: This cross-sectional study was performed in Germany and used an exploratory design to analyze responses to an interview conducted by an independent, established commissioned polling institute in March and April 2022. Participants were 16 years or older, with German language fluency and comprehension and living in Germany. Main outcomes and measures: Knowledge about recommendations for euthanasia and withdrawal of life-prolonging treatment as well as personal attitudes toward (1) euthanasia and withdrawal of life-prolonging treatment and (2) surrogate end-of-life decision-making for newborn infants were assessed. Results: The study included 2116 participants (1077 females [50.9%]; mean [SD] age 52.1 [18.7] years). Of the participants, 16.8% (311 of 1851) reported knowing the German recommendations for euthanasia and withdrawal of life-prolonging treatment for neonates. Euthanasia and withdrawal of life-prolonging treatment were supported by 64.7% (1369 of 2116) and 77.9% (1649 of 2116) of respondents, respectively. Shared decision-making between parents and physicians for neonates in end-of-life situations was supported by 65.6% of participants (1388). In situations where shared decision-making was not possible, 73.4% of respondents (1019 of 1388) put the ultimate decision to the parents. The magnitude of the associations was low between sociodemographic factors and views on ethical issues and customary practices involved in end-of-life decisions for neonates. Conclusions and relevance: Results of this cross-sectional study suggested that most respondents were not aware of the national German recommendations for euthanasia and withdrawal of life-prolonging treatment for sick and extremely preterm newborns. When counseling parents of periviable newborns, clinicians may need to exert more effort in explaining the legal and ethical framework; a highly individualized approach is warranted.

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