Autonomy gone awry: a cross-cultural study of parents' experiences in neonatal intensive care units

• Published in: Theoretical medicine and bioethics Vol. 25; no. 4; pp. 329 - 365
• Main Authors: Orfali, Kristina, Gordon, Elisa J
• Format: Journal Article
• Language: English
• Published: Netherlands Springer Nature B.V 01-01-2004
• Subjects: Academic Medical Centers; Adaptation, Psychological - ethics; Adult; Attitude to Health - ethnology; Autonomy; Bioethics; Cross-Cultural Comparison; Decision making; Decision Making - ethics; Empathy; Female; France; Humans; Infant, Newborn; Intensive care; Intensive care units; Intensive Care Units, Neonatal - ethics; Intensive Care Units, Neonatal - legislation & jurisprudence; Intensive Care Units, Neonatal - standards; Mothers - psychology; Narration; Neonates; Parental Consent - ethics; Parental Consent - legislation & jurisprudence; Parental Consent - psychology; Physician's Role - psychology; Professional-Family Relations; Prognosis; Surveys and Questionnaires; Trust - psychology; United States; Withholding Treatment - ethics; Withholding Treatment - legislation & jurisprudence; France; United States; Empirical Approach; Death and Euthanasia; Health Care and Public Health; Professional Patient Relationship
• ISSN: 1386-7415; 1573-1200
• DOI: 10.1007/s11017-004-3135-9

This paper examines parents' experiences of medical decision-making and coping with having a critically ill baby in the Neonatal Intensive Care Unit (NICU) from a cross-cultural perspective (France vs. U.S.A.). Though parents' experiences in the NICU were very similar despite cultural and institutional differences, each system addresses their needs in a different way. Interviews with parents show that French parents expressed overall higher satisfaction with the care of their babies and were better able to cope with the loss of their child than American parents. Central to the French parents' perception of autonomy and their sense of satisfaction were the strong doctor-patient relationship, the emphasis on medical certainty in prognosis versus uncertainty in the American context, and the "sentimental work" provided by the team. The American setting, characterized by respect for parental autonomy, did not necessarily translate into full parental involvement in decision-making, and it limited the rapport between doctors and parents to the extent of parental isolation. This empirical comparative approach fosters a much-needed critique of philosophical principles by underscoring, from the parents' perspective, the lack of "emotional work" involved in the practice of autonomy in the American unit compared to the paternalistic European context. Beyond theoretical and ethical arguments, we must reconsider the practice of autonomy in particularly stressful situations by providing more specific means to cope, translating the impersonal language of "rights" and decision-making into trusting, caring relationships, and sharing the responsibility for making tragic choices.