Parental perspectives on end-of-life care in the pediatric intensive care unit.
OBJECTIVE
To identify priorities for quality end-of-life care from the parents' perspective.


METHODS
Anonymous, self-administered questionnaire.


METHODS
Three pediatric intensive care units in Boston.


METHODS
Parents of children who had died after withdrawal of life support.


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.
Meyer
Elaine C
EC
Department of Psychiatry, Harvard Medical School, Children's Hospital, Boston, MA 02115-5724 , USA. elaine.meyer@tch.Harvard.edu
Burns
Jeffrey P
JP
Griffith
John L
JL
Truog
Robert D
RD
D000328:Adult; D001900:Boston; D002648:Child; D003657:Decision Making; D005260:Female; D006801:Humans; D015278:Intensive Care Units, Pediatric; D008297:Male; D010146:Pain; D010290:Parents / Q000523:psychology*; D011379:Prognosis; D011787:Quality of Health Care; D011788:Quality of Life; D011795:Surveys and Questionnaires; D013727:Terminal Care; D028761:Withholding Treatment