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

Title

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

Creator

Meyer EC; Burns JP; Griffith JL; Truog RD

Publisher

Critical Care Medicine

Date

2002

Subject

Child; Female; Humans; Male; Intensive Care Units; Terminal Care; Adult; Withholding Treatment; Prognosis; Questionnaires; Boston; Pain; Quality of Health Care; quality of life; Pediatric; Empirical Approach; Death and Euthanasia; decision making; ICU Decision Making; Parents/psychology

Description

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.
2002

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

226-231

Issue

1

Volume

30

Citation

Meyer EC; Burns JP; Griffith JL; Truog RD, “Parental perspectives on end-of-life care in the pediatric intensive care unit,” Pediatric Palliative Care Library, accessed July 30, 2021, https://pedpalascnetlibrary.omeka.net/items/show/12836.

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