Parental decisions regarding limitation of care and withdrawal of support in critically ill children

Kathleen L. Meert, Celia Thurston, Ashok P. Sarnaik

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1 Scopus citations

Abstract

Introduction: The death of a critically ill child often involves the decision to limit or withdraw supportive care. We evaluated parental perceptions of the decision making process and identified factors important to parents making end of life decisions for their children. Methods: Letters were sent to the parents of all children who died in the ICU between Jan. 1, 1995 and June 30, 1998 inviting them to participate in a telephone interview. Interviews consisted of 73 closed-ended and 6 open ended-questions. Parental decision making was evaluated with a subset of 35 questions. Results: Seventy-eight parents of 155 children agreed to be interviewed, 24 refused and 55 were unable to be contacted. Of those who agreed, 41 recalled discussing limitation or withdrawal of support with their child's physician. Nineteen of 41 (46%) parents met once, 14 (34%) met twice and 8 (20%) met ≥ 3 times with the physician. Parents satisfied with the number of meetings ranked physician communication skills higher than those who were dissatisfied (5 vs 3, medians, p<.001 by Mann-Whitney U, where 1 = very poor and 5 = excellent). Physicians made specific recommendations regarding life support in 22 (54%) cases, only 10 of which were initially agreed upon by the parents. Thiry-one (76%) parents felt they had enough authority to make decisions for their child, 8 (20%) felt they had too little, and one (2%) felt they had too much. Those satisfied with their authority had more trust in their physician than those who were not (5 vs 1, p<.001,1 = no trust and 5 = complete trust). The importance of various factors on parental decisions were graded (1 = no importance and 5 = extreme importance): physician recommendations (5), nurse recommendations (4), wishes of the child (4), diagnosis (5), duration of illness (3), expected neurologic recovery (5), degree of pain and suffering (5), family finances (1), religious committments (4), and the opinion of family and friends (1). Conclusions: Parents rely on physician recommendations when making end of life decisions for their children. Effective communication and the establishment of trust are crucial in guiding parents through the decision making process.

Original languageEnglish
Pages (from-to)A83
JournalCritical Care Medicine
Volume27
Issue number12 SUPPL.
DOIs
StatePublished - 1999

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