Background and aim Decisions whether or not to perform high-risk surgery in preterm infants depend on prognosis and preferences/values of society as well as parents and healthcare workers. We aimed to assess differences in preferences between these groups to life-saving surgery in critically ill infants.
Methods Paediatric doctors and nurses, parents of preterm infants (PPs) and term infants (PTs) were recruited. A scenario with a critically ill preterm infant with necrotising enterocolitis requiring surgery was presented. Surgery would result in gastrointestinal complications and one of five possible disability health-states (HS1 mild cognitive, severe physical; HS2 moderate respiratory; HS3 severe cognitive and mild physical; HS4 otherwise uncomplicated; HS5 moderate cognitive and mild respiratory complications). Without surgery, the infant would die. Subjects (i) ranked death and the health-states according to perceived severity and (ii) decided for each health-state whether or not to proceed with surgery “at all costs”.
Results 55 doctors, 102 nurses, 178 PPs and 201 PTs were recruited. (i) Nurses more likely ranked states with predominant cognitive disability (HS3 and HS5) as worse than death compared with other groups. (ii) In less adverse health-states (HS1 and HS4) there were no differences between groups. Again, nurses were least likely to decide to save-at-all-costs in HS3 and HS5 and PPs were more likely to decide to save-at-all-costs than healthcare workers in a poor outcome (HS5).
Conclusions Nurses were least tolerant to adverse health-states. We show that health state preferences vary between doctors, nurses and parents. Parental counselling should account for these differences.