Ethical Issues Around Pediatric Death: Navigating Consent, Assent, and Disagreement Regarding Life-Sustaining Medical Treatment

Silvana Barone; Yoram Unguru

doi:10.1016/j.chc.2018.05.009

Ethical Issues Around Pediatric Death: Navigating Consent, Assent, and Disagreement Regarding Life-Sustaining Medical Treatment

Child Adolesc Psychiatr Clin N Am. 2018 Oct;27(4):539-550. doi: 10.1016/j.chc.2018.05.009. Epub 2018 Jul 25.

Authors

Silvana Barone¹, Yoram Unguru²

Affiliations

¹ Division of General Pediatrics and Adolescent Medicine, The Johns Hopkins Hospital, Johns Hopkins University Berman Institute of Bioethics, 200 North Wolfe Street, Baltimore, MD 21287, USA.
² Division of Pediatric Hematology/Oncology, The Herman and Walter Samuelson Children's Hospital at Sinai, 2401 West Belvedere Avenue, Baltimore, MD 21215, USA; Johns Hopkins University Berman Institute of Bioethics, 1809 Ashland Avenue, Baltimore, MD 21205, USA. Electronic address: yunguru@lifebridgehealth.org.

PMID: 30219216
DOI: 10.1016/j.chc.2018.05.009

Abstract

Decisions regarding whether or not to pursue experimental therapies or life-sustaining medical treatment of children with life-limiting illness can be a significant source of distress and conflict for both families and health care providers. This article reviews the concepts of parental permission (consent), assent, and emerging capacity and how they relate to decision-making for minors with serious illness. Decision-making capacity for adolescents is discussed generally and in the context of emotionally charged situations pertaining to the end of life. Strategies for minimizing conflict in situations of disagreement between children and families are provided.

Keywords: Adolescents; Assent; Consent; Death; Decision-making; Life-sustaining medical treatment.

MeSH terms

Adolescent
Child
Clinical Decision-Making / ethics*
Decision Making / ethics*
Humans
Informed Consent / ethics*
Minors
Parent-Child Relations
Parents / psychology
Physicians / ethics