David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
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)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
Kathy Charmaz (1993). [Book Review] Good Days, Bad Days, the Self in Chronic Illness and Time. [REVIEW] Hastings Center Report 23 (5):43.
Harold Bursztajn (ed.) (1981/1990). Medical Choices, Medical Chances: How Patients, Families, and Physicians Can Cope with Uncertainty. Routledge.
M. Cuttini (2001). The European Union Collaborative Project on Ethical Decision Making in Neonatal Intensive Care (EURONIC): Findings From 11 Countries. Journal of Clinical Ethics 12 (3):290.
J. D. Lantos, W. Meadow, S. H. Miles, E. Ekwo, J. Paton, Hageman Jr & M. Siegler (1992). Providing and Forgoing Resuscitative Therapy for Babies of Very Low Birth Weight. Journal of Clinical Ethics 3 (4):283.
Earl E. Shelp (1986). Born to Die? Deciding the Fate of Critically Ill Newborns. Monograph Collection (Matt - Pseudo).
Citations of this work BETA
No citations found.
Similar books and articles
Marie Berg & Helena Wigert (2011). Parents' Participation in the Care of Their Child in Neonatal Intensive Care. In Gill Thomson, Fiona Dykes & Soo Downe (eds.), Qualitative Research in Midwifery and Childbirth Phenomenological Approaches. Routledge
Amy Mullin (2006). Parents and Children: An Alternative to Selfless and Unconditional Love. Hypatia 21 (1):181-200.
Jennifer L. Rosato, Using Bioethics Discourse to Determine When Parents Should Make Health Care Decisions for Their Children: Is Deference Justified?
Mutsawashe Bwakura-Dangarembizi, Rosemary Musesengwa, Kusum Nathoo, Patrick Takaidza, Tawanda Mhute & Tichaona Vhembo (2012). Ethical and Legal Constraints to Children's Participation in Research in Zimbabwe: Experiences From the Multicenter Pediatric Hiv Arrow Trial. BMC Medical Ethics 13 (1):17-.
Michael Gill, Picu Prometheus: Ethical Issues in the Treatment of Very Sick Children in Paediatric Intensive Care.
H. U. I. Edwin, W. U. Dorian, Sau-ying Chiu & Suet-kam Shum (2011). Adolescent and Parental Perceptions of Medical Decision-Making in Hong Kong. Bioethics 25 (9):516-526.
Carson Strong (1984). Paternalism in the Neonatal Intensive Care Unit. Theoretical Medicine and Bioethics 5 (1).
H. U. I. Edwin (2011). Adolescent and Parental Perceptions of Medical Decision-Making in Hong Kong. Bioethics 25 (9):516-526.
Added to index2009-01-28
Total downloads24 ( #124,740 of 1,726,249 )
Recent downloads (6 months)4 ( #183,615 of 1,726,249 )
How can I increase my downloads?