Kavanaugh, K., Savage, T., Kilpatrick, S., Kimura, R., & Hershberger, P. (2005). Journal of Pediatric Nursing, 20(5), 347-359.
NICU nurses are routinely faced with the heart-wrenching emotional trauma of helping parents of extremely premature infants make decisions regarding life support. As technological advances have led to increasing numbers of prematures and the concomitant ethical dilemmas, this issue has become more prevalent. Decisions related to life support now involve parents and providers during pregnancy as well as delivery and postpartum. The American Academy of Pediatrics Committee on the Fetus and Newborn (2002) recommends that parents be counseled both prenatally and postnatally regarding infant outcomes and treatment options, but there has been relatively little research exploring how parents make these decisions. This study used a collective case study approach with structured open-ended interviews with high-risk perinatal parents and their physicians and nurses during the prenatal, postnatal, and postdeath periods.
Twenty-five tape-recorded interviews were conducted with a sample of six cases (six mothers, two fathers, six physicians, and two nurses). Hospital records were reviewed for the documentation of decisions made and support provided. The Ottawa Decision Support Framework (O'Connor et al., 1998) was used to support the study, because it addresses three determinants of decision making after a new diagnosis or condition that requires careful but value-laden deliberations: (a) assessment of client and practitioner determinants; (b) provision of decision-making support; and (c) evaluating quality and outcomes of the decision and decision-making process.
Findings indicated that providers perceived that parents were involved in treatment decisions to a greater extent than reported by parents. Parents reported responding to recommendations for treatment and end-of-life decisions rather than being involved in shared decision making.
Although most parents wanted to be involved in decision making, not all agreed. Parents who expressed greater interest in shared decision making wanted both information and recommendations from physicians. All desired more information during the prenatal period. These parents made several suggestions that can be facilitated by nurses easily. Hearing distressing news more than once, having family or another professional present when information is given, giving messages of hope tempered with reality, and using an honest approach were important to these parents. Although this study is limited by its small sample and lack of generalizability, it supports previous research and provides greater understanding of parents' preferences for shared decision making and a clear role of advocacy for the NICU nurse.
Judy Beal
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