Theoretical Medicine and Bioethics 25 (4):329-365 (2004)
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.
|Keywords||autonomy cross-cultural experience France Neonatal Intensive Care Unit (NICU) parental decision-making paternalism U.S|
|Categories||categorize this paper)|
References found in this work BETA
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[Book Review] Good Days, Bad Days, the Self in Chronic Illness and Time. [REVIEW]Kathy Charmaz - 1993 - Hastings Center Report 23 (5):43.
The European Union Collaborative Project on Ethical Decision Making in Neonatal Intensive Care (EURONIC): Findings From 11 Countries.M. Cuttini - 2001 - Journal of Clinical Ethics 12 (3):290.
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Citations of this work BETA
Moral Dilemmas in Neonatology as Experienced by Health Care Practitioners: A Qualitative Approach. [REVIEW]Florence J. Van Zuuren & Eeke van Manen - 2006 - Medicine, Health Care and Philosophy 9 (3):339-347.
Moral Dilemmas in Neonatology as Experienced by Health Care Practitioners: A Qualitative Approach.J. van Zuuren Florence & van Manen Eeke - 2006 - Medicine, Health Care and Philosophy 9 (3):339-347.
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