Center for Medical Ethics and Health Policy Staff Publications
Publication Date
1-1-2023
Journal
Stereotactic and Functional Neurosurgery
DOI
10.1159/000530694
PMID
37844562
PMCID
PMC10586720
PubMedCentral® Posted Date
10-19-2023
PubMedCentral® Full Text Version
Author MSS
Published Open-Access
yes
Keywords
Humans, Child, Dystonia, Deep Brain Stimulation, Quality of Life, Dystonic Disorders, Informed Consent, Deep brain stimulation, Dystonia, Children, Ethics, Safety, Parents
Abstract
Introduction: Pediatric deep brain stimulation (pDBS) is commonly used to manage treatment-resistant primary dystonias with favorable results and more frequently used for secondary dystonia to improve quality of life. There has been little systematic empirical neuroethics research to identify ethical challenges and potential solutions to ensure responsible use of DBS in pediatric populations.
Methods: Clinicians (n = 29) who care for minors with treatment-resistant dystonia were interviewed for their perspectives on the most pressing ethical issues in pDBS.
Results: Using thematic content analysis to explore salient themes, clinicians identified four pressing concerns: (1) uncertainty about risks and benefits of pDBS (22/29; 72%) that poses a challenge to informed decision-making; (2) ethically navigating decision-making roles (15/29; 52%), including how best to integrate perspectives from diverse stakeholders (patient, caregiver, clinician) and how to manage surrogate decisions on behalf of pediatric patients with limited capacity to make autonomous decisions; (3) information scarcity effects on informed consent and decision quality (15/29; 52%) in the context of patient and caregivers' expectations for treatment; and (4) narrow regulatory status and access (7/29; 24%) such as the lack of FDA-approved indications that contribute to decision-making uncertainty and liability and potentially limit access to DBS among patients who may benefit from it.
Conclusion: These results suggest that clinicians are primarily concerned about ethical limitations of making difficult decisions in the absence of informational, regulatory, and financial supports. We discuss two solutions already underway, including supported decision-making to address uncertainty and further data sharing to enhance clinical knowledge and discovery.
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