title: Using vignettes to explore how parents approach end-of-life decision making for terminally ill infants.
abstract: With the complexity of technologies in medical centers today, family members are frequently confronted with situations that require decision making on behalf of a loved one. Some researchers have studied the needs of decision makers directly; however, the reality of asking opinions at the bedside of a dying patient makes it a difficult issue to research directly. The vignette method has been used to extrapolate data by asking study participants how they would act under certain circumstances. This vignette-based study explores potential decision-making processes collected from volunteers about how family members might make decisions for a loved one. Ninety-four students were asked to read vignettes as if they were caregivers. Students were randomly assigned to one of three clinical scenarios describing a family member at a critical decision point. The age of the family member, relationship, and medical condition were manipulated in the three otherwise identical scenarios. The results indicated that the ranked responses to the categories were different in the three age-group scenarios. In the group simulating parent decision making for the terminally ill infant, the participants reported "quality of life" and "chance of survival" most frequently as to compared to "pain/comfort" or "family relationships" for older patients. When making decisions in the infant scenario, participants were twice as likely to express religious or spiritual criteria for their decisions and half as likely to express cost concerns. Among the three scenarios, participants simulating family decisions for infants indicated that different caregiving values may apply. They were even more likely than the others to choose mechanical ventilation as an option when the prognosis is extremely poor. All family members making decisions for a loved one, regardless of age or relationship, need supportive assistance from nurses; however, pediatric nurses who develop relationships with parents of terminally ill infants especially need to understand their values in making decisions.
authors.affiliation: George Mason University, Fairfax, VA, USA.
authors.forename: Marie P
authors.initials: MP
authors.lastname: Kodadek
authors.forename: Veronica D
authors.initials: VD
authors.lastname: Feeg
mesh_terms: D000328:Adult; D003657:Decision Making; D004989:Ethics; D006302:Health Services Research; D006801:Humans; D007223:Infant; D008875:Middle Aged; D010290:Parents; D011788:Quality of Life; D013727:Terminal Care; D019452:Terminally Ill