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.


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