Objective: To identify priorities for quality end-of-life care from the parents' perspective.
Design: Anonymous, self-administered questionnaire.
Setting: Three pediatric intensive care units in Boston.
Participants: Parents of children who had died after withdrawal of life support.
Measurement and main results: Parents' 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 child's 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 child's 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.
Conclusions: Parents place the highest priorities on quality of life, likelihood of improvement, and perception of their child's 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.