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Pediatrics. 2019 Jul;144(1). pii: e20183714. doi: 10.1542/peds.2018-3714. Epub 2019 Jun 5.

Allowing Adolescents to Weigh Benefits and Burdens of High-stakes Therapies.

Author information

1
Lillie Frank Abercrombie Section of Cardiology, Department of Pediatrics, Baylor College of Medicine and Texas Children's Hospital, Houston, Texas; kriti.puri@bcm.edu.
2
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas.
3
Lillie Frank Abercrombie Section of Cardiology, Department of Pediatrics, Baylor College of Medicine and Texas Children's Hospital, Houston, Texas.
4
Department of Pediatrics, School of Medicine, University of Missouri-Kansas City and Children's Mercy Hospital, Kansas City, Missouri; and.
5
Section of Hematology-Oncology, Department of Pediatrics, Center for Medical Ethics and Health Policy, Baylor College of Medicine and Texas Children's Cancer and Hematology Centers, Houston, Texas.

Abstract

We present the case of a girl aged 17 years and 10 months who has a strong family history of long QT syndrome and genetic testing confirming the diagnosis of long QT syndrome in the patient also. She was initially medically treated with β-blocker therapy; however, after suffering 1 episode of syncope during exertion, she underwent placement of an implantable cardioverter defibrillator. Since then, she has never had syncope. However, during the few months before this presentation, she experienced shocks on multiple occasions without any underlying arrhythmias. These shocks are disconcerting for her, and she is having significant anxiety about them. She requests the defibrillator to be inactivated. However, her mother, who also shares the diagnosis of long QT syndrome, disagrees and wants the defibrillator to remain active. The ethics team is consulted in this setting of disagreement between an adolescent, who is 2 months shy of the age of maturity and medical decision-making, and her mother, who is currently responsible for her medical decisions. The question for the consultation is whether it would be ethically permissible for the doctors to comply with the patient's request to turn off the defibrillator or whether the doctors should follow the mother's wishes until the patient is 18 years of age.

PMID:
31167936
DOI:
10.1542/peds.2018-3714

Conflict of interest statement

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

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