title: Parent decision making for life support for extremely premature infants: from the prenatal through end-of-life period.
abstract: Most deaths of extremely premature infants occur in the perinatal period. Yet, little is known about how parents make life support decisions in such a short period of time. In the paper, how parents make life support decisions for extremely premature infants from the prenatal period through death from the perspectives of parents, nurses, and physicians is described. Five cases, comprised of five mothers, four neonatologists, three nurses, and one neonatal nurse practitioner, are drawn from a larger collective case study. Prenatal, postnatal and end-of-life interviews were conducted, and medical record data were obtained. In an analysis by two research team members, mothers were found to exhibit these characteristics: desire for and actual involvement in life support decisions, weighing pain, suffering and hope in decision making, and wanting everything done for their infants. All mothers received decision making help and support from partners and family, but relationships with providers were also important. Finally, external resources impacted parental decision making in several of the cases. By understanding what factors contribute to parents' decision making, providers may be better equipped to prepare and assist parents when making life support decisions for their extremely premature infants.
authors.affiliation: University of Illinois at Chicago, Department of Women, Children, and Family Health Science (MC802), College of Nursing, 845 S. Damen Avenue, Room 843, Chicago, IL 60612-7350, USA. tmoro@uic.edu
authors.forename: Teresa T
authors.initials: TT
authors.lastname: Moro
authors.forename: Karen
authors.initials: K
authors.lastname: Kavanaugh
authors.forename: Teresa A
authors.initials: TA
authors.lastname: Savage
authors.forename: Maria R
authors.initials: MR
authors.lastname: Reyes
authors.forename: Robert E
authors.initials: RE
authors.lastname: Kimura
authors.forename: Rama
authors.initials: R
authors.lastname: Bhat
mesh_terms: D000328:Adult; D001293:Attitude to Death; D003657:Decision Making; D005260:Female; D006801:Humans; D052577:Infant, Extremely Low Birth Weight / Q000523:psychology*; D007231:Infant, Newborn; D008016:Life Change Events; D008020:Life Support Care / Q000523:psychology*; D008297:Male; D009035:Mothers / Q000523:psychology; D017283:Neonatal Nursing / Q000379:methods; D015404:Nursing Methodology Research; D010290:Parents / Q000193:education / Q000523:psychology*; D011247:Pregnancy; D047928:Premature Birth / Q000451:nursing / Q000523:psychology*; D011795:Surveys and Questionnaires; D014342:Truth Disclosure; D028761:Withholding Treatment; D055815:Young Adult