Hostname: page-component-669899f699-cf6xr Total loading time: 0 Render date: 2025-04-25T02:28:10.962Z Has data issue: false hasContentIssue false
  • English
  • Français

Bioethics at the bedside: considering the adolescent voice in withdrawal of life-sustaining therapy

Published online by Cambridge University Press:  14 October 2024

Aine Lynch Open the ORCID record for Aine Lynch [Opens in a new window] ,
Andrew Helmers ,
Aamir Jeewa ,
Christoph Haller  and
Roxanne Kirsch
Aine Lynch*
Affiliation:
Division of Pediatric Cardiology, Columbia University Medical Center, New York Presbyterian Morgan Stanley Children’s Hospital, New York, USA
Andrew Helmers
Affiliation:
Department of Critical Care Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada Department of Bioethics, The Hospital for Sick Children, Toronto, Ontario, Canada
Aamir Jeewa
Affiliation:
Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada Division of Cardiology, Department of Pediatrics, The Hospital for Sick Children, Toronto, Ontario, Canada
Christoph Haller
Affiliation:
Division of Cardiovascular Surgery, The Hospital for Sick Children, Toronto, Ontario, Canada Department of Surgery, University of Toronto, Toronto, Ontario, Canada
Roxanne Kirsch
Affiliation:
Department of Critical Care Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada Department of Bioethics, The Hospital for Sick Children, Toronto, Ontario, Canada
*
Corresponding author: Aine Lynch; Email: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Durable mechanical circulatory devices are commonly used to support children and adolescents in end-stage heart failure. However, these patients remain at high risk of acute medical complications, which may lead to significant impairment in functional capacity, altered quality of life, or death. We explore the incorporation of adolescent directives into medical decision-making in this scenario through a clinical case vignette.

Keywords

Withdrawal of life-sustaining therapyadolescentdecision-making
Type
Bioethics Forum
Information
Cardiology in the Young , Volume 34 , Issue 12 , December 2024 , pp. 2716 - 2718
Check for updates
Copyright
© The Author(s), 2024. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Article purchase

Temporarily unavailable

References

Proulx, C, Floh, A, Jeewa, A et al. Successful Pediatric Mechanical Thrombectomy for HeartMate 3-related Intracranial Thromboembolism. World J Pediatr Congenit Heart Surg 2022; 13: 242–244. DOI: 10.1177/21501351221075840.CrossRefGoogle ScholarPubMed
Katz, AL, Webb, SA, Committee on bioethics. Informed consent in decision-making in pediatric practice. Pediatrics 2016; 138: e20161485. DOI: 10.1542/peds.2016-1485.CrossRefGoogle ScholarPubMed
Great Britain. England. Court of Appeal, Civil Division. Gillick v West Norfolk and Wisbech area health authority. All Engl Law Rep 1984; 1985: 533–559.Google Scholar
Sharko, M, Jameson, R, Ancker, JS, Krams, L, Webber, EC, Rosenbloom, ST. State-by-state variability in adolescent privacy laws. Pediatrics 2022; 149: e2021053458. DOI: 10.1542/peds.2021-053458.CrossRefGoogle ScholarPubMed
Sulmasy, LS, Bledsoe, TA, for the ACP Ethics, Professionalism and Human Rights Committee. American College of Physicians Ethics Manual. Ann Intern Med 2019; 170: S1–S32. DOI: 10.7326/M18-2160.Google ScholarPubMed
European Union Agency for Fundamental Rights. (2023). Consenting to medical treatment without parental consent. Available from: https://fra.europa.eu/en/publication/2017/mapping-minimum-age-requirements-concerning-rights-child-eu/consenting-medical-treatment-without-parental-consent. Accessed October 7, 2023.Google Scholar
Tsai, E, Canadian Paediatric Society (CPS) Bioethics Committee. Advance care planning for paediatric patients. Paediatr Child Health 2008; 13: 791–796.CrossRefGoogle Scholar
Sharko, M, Jameson, R, Ancker, JS, Krams, L, Webber, EC, Rosenbloom, ST. State-by-state variability in adolescent privacy laws. Pediatrics 2022; 149: e2021053458. DOI: 10.1542/peds.2021-053458.CrossRefGoogle Scholar
Mueller, PS. Ethical and legal concerns associated with withdrawing mechanical circulatory support: a U.S. perspective. Front Cardiovasc Med 2022; 9: 897955. DOI. 10.3389/fcvm.2022.897955.CrossRefGoogle Scholar
Kirsch, RE, Coronado, J, Roeleveld, PP, Tweddell, J, Mott, AM, Roth, SJ. The burdens of offering: ethical and practical considerations. World J Pediatr Congenit Heart Surg 2017; 8: 715–720. DOI: 10.1177/2150135117733940.CrossRefGoogle ScholarPubMed
Coughlin, KW, Canadian Pediatric Society Bioethics Comittee. Medical decision-making in paediatrics: Infancy to adolescence. Paed Child Healt-CAN 2018; 23: 138–146. DOI: 10.1093/pch/pxx127.CrossRefGoogle ScholarPubMed
Cousino, MK, Miller, VA, Smith, C et al. Medical and end-of-life decision-making preferences in adolescents and young adults with advanced heart disease and their parents. JAMA Netw Open 2023; 6: e2311957. DOI: 10.1001/jamanetworkopen.2023.CrossRefGoogle Scholar
Cousino, MK, Miller, VA, Smith, C et al. Medical and end-of-life decision making in adolescents’ pre-heart transplant: a descriptive pilot study. Palliat Med 2020; 34: 272–280. DOI: 10.1177/0269216319874689.CrossRefGoogle ScholarPubMed
Rosenberg, AR, Wolfe, J, Wiener, L, Lyon, M, Ethics, Feudtner C. Emotions, and the skills of talking about progressing disease with terminally ill adolescents: a review. JAMA Pediatr 2016; 170: 1216–1223. DOI: 10.1001/jamapediatrics.2016.2142.CrossRefGoogle ScholarPubMed