Parental perspectives on end-of-life care in the pediatric intensive care unit

OBJECTIVETo identify priorities for quality end-of-life care from the parents’ perspective. DESIGNAnonymous, self-administered questionnaire. SETTINGThree pediatric intensive care units in Boston. PARTICIPANTSParents of children who had died after withdrawal of life support. MEASUREMENT AND MAIN RESULTSParents’ views of the adequacy of pain management, decision making, and social support during and after the death of their child were measured with the Parental Perspectives Questionnaire. Of 96 eligible households, 56 (58%) responded. In 90% of cases, physicians initiated discussion of withdrawal of life support, although nearly half of parents had considered it independently. Among decision-making factors, parents rated the quality of life, likelihood of improvement, and perception of their childʼs pain as most important. Twenty percent of parents disagreed that their children were comfortable in their final days. Fifty-five percent of parents felt that they had little to no control during their childʼs final days, and nearly a quarter reported that, if able, they would have made decisions differently. There were significant differences (p < .001) between the involvement of family, friends, and staff members at the time of death and greater agreement (p < .01) about the decision to withdraw support between parents and staff members than with other family members. CONCLUSIONSParents place the highest priorities on quality of life, likelihood of improvement, and perception of their childʼs pain when considering withdrawal of life support. Parents make such decisions and garner psychosocial support in the context of a social network that changes over time and includes healthcare professionals, family, and friends.