Doctor of Social Work (DSW)
Lyle S. Hallman Faculty of Social Work
Discontinuation of intensive care treatment is a factor in most infant deaths occurring in the neonatal intensive care unit. Parents participate in and are affected by decisions to discontinue intensive care. Yet, few studies have been reported which examine parental views and experience. The purpose of this study was to explore parental involvement in the discontinuation of intensive care treatment from critically-ill infants. Using a qualitative methodology, decision-making in 28 sets of parents, 27 mothers and 17 fathers, was examined. The key themes reported by parents were personal process—individual feelings, thoughts, and reactions; the marital partnership—parents’ experiences and relationships with their partners; the medical partnership—communication and relationship with medical information and team members; and, finally, parental relationships and experiences with their infants. The focus of parents’ lives, marital relationships, and relationships with health professionals revolved around their infants. In a one year period, 81% of the NICU deaths involved discontinuation of life supports, most often removal of the ventilator. Parents viewed even the most basic limitations on life-support, removing a ventilator from a dying infant, for example, as constituting a major decision about whether or not to discontinue treatment. The longer an infant lived, the more complex and lengthy was the process of parental decision-making about treatment. In caring for and being responsible for infants who would not achieve meaningful survival, parents demonstrated attributes and priorities reflective of good parenting. The study demonstrated that an understanding of the parental vantage point contributes greatly to ethical analyses of the moral problems and conflicts which arise in response to the phenomenon of discontinuing intensive care. In conclusion, it is apparent that the vantage point of those most affected by and involved in ethical issues, has the potential to greatly advance our understanding of these issues.
Daniels, Carolyn, "The discontinuation of life-prolonging medical treatment from infants in the NICU: The parental perspective" (1995). Theses and Dissertations (Comprehensive). 197.