Family Factors Affect Clinician Attitudes in Pediatric End-of-Life Decision Making: A Randomized Vignette Study

Abstract

ContextConflicts between families and clinicians in pediatric end-of-life (EOL) care cause distress for providers, dissatisfaction for patients' families, and potential suffering for terminally ill children. ObjectivesWe hypothesized that family factors might influence clinician decision making in these circumstances. MethodsWe presented vignettes concerning difficult EOL decision making, randomized for religious objection to therapy withdrawal and perceived level of family involvement, to clinicians working in three Children's Hospital intensive care units. Additionally, attitudes about EOL care were assessed. ResultsThree hundred sixty-four respondents completed the questionnaire, for an overall response rate of 54%. Respondents receiving the “involved family” vignette were more likely to agree to continue medical care indefinitely (P<0.0005). Respondents were marginally more likely to pursue a court-appointed guardian for those patients whose families had nonreligious objections to withdrawal (P=0.05). Respondents who thought that a fear of being sued affected decisions were less likely to pursue unilateral withdrawal (odds ratio 0.8, 95% CI=0.6–0.9). Those who felt personal distress as a result of difficult EOL decision making, thought they often provided “futile” care, or those who felt EOL care was effectively addressed at the institution were less likely to want to defer to the parents' wishes (range of odds ratios 0.7–1). ConclusionIn this randomized vignette study, we have shown that family factors, particularly how involved a family seems to be in a child's life, affect what clinicians think is ethically appropriate in challenging EOL cases. Knowledge of how a family's degree of involvement may affect clinicians should be helpful to the clinical ethics consultants and offer some degree of insight to the clinicians themselves.