title: A delicate subject: The impact of cultural factors on neonatal and perinatal decision making.
abstract: The neonatal intensive care unit (NICU) is a high-stress environment for both families and health care providers that can sometimes make appropriate medical decisions challenging. We present a review article of non-medical barriers to effective decision making in the NICU, including: miscommunication, mixed messages, denial, comparative social and cultural influences, and the possible influence of perceived legal issues and family reliance on information from the Internet. As examples of these barriers, we describe and discuss two cases that occurred simultaneously in the same NICU where decisions were influenced by social and cultural differences that were misunderstood by both medical staff and patients' families. The resulting stress and emotional discomfort created an environment with sub-optimal relationships between patients' families and health care providers. We provide background on the sources of conflict in these particular cases. We also offer suggestions for possible amelioration of similar conflicts with the twin goals of facilitating compassionate decision making in NICU settings and promoting enhanced well-being of both families and providers.
authors.affiliation: The Center for Medical Humanities, Compassionate Care, & Bioethics, Department of Preventive Medicine, Stony Brook University School of Medicine, Stony Brook, NY, USA.
authors.forename: S
authors.initials: S
authors.lastname: Van McCrary
authors.affiliation: The Center for Medical Humanities, Compassionate Care, & Bioethics, Department of Preventive Medicine, Stony Brook University School of Medicine, Stony Brook, NY, USA.
authors.forename: H C
authors.initials: HC
authors.lastname: Green
authors.affiliation: Stony Brook University Medical Center, Stony Brook, NY, USA.
authors.forename: A
authors.initials: A
authors.lastname: Combs
authors.affiliation: Division of Neonatal-Perinatal Medicine, Department of Pediatrics, Stony Brook University School of Medicine, Stony Brook, NY, USA.
authors.forename: J P
authors.initials: JP
authors.lastname: Mintzer
authors.affiliation: Department of Obstetrics, Gynecology & Reproductive Medicine, Stony Brook University School of Medicine, Stony Brook, NY, USA.
authors.forename: J G
authors.initials: JG
authors.lastname: Quirk
mesh_terms: D000328:Adult; D003144:Communication Barriers; D003220:Conflict, Psychological; D000013:Congenital Abnormalities / Q000208:ethnology / Q000401:mortality / Q000523:psychology*; D003469:Culture; D003657:Decision Making; D003717:Denial, Psychological; D005066:Euthanasia, Passive; D005260:Female; D005817:Genetic Counseling; D006801:Humans; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal; D008297:Male; D016487:Parenting; D010290:Parents / Q000523:psychology*; D011247:Pregnancy; D011368:Professional-Family Relations; D011379:Prognosis; D013315:Stress, Psychological
keywords: African Americans; Ethics; consanguinity; decision making; institutional; medical; nursing; prenatal diagnosis