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Deep Brain Stimulation for Pediatric Dystonia: Clinicians' Perspectives on the Most Pressing Ethical Challenges
Kristin M Kostick-Quenet1, Lavina Kalwani1, Laura N Torgerson1
1Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.
Insights
Clinicians identify key ethical challenges in pediatric deep brain stimulation (pDBS), including decision-making uncertainty and limited regulatory support. Solutions like supported decision-making and data sharing are proposed for responsible pDBS use.
Area of Science:
- Neuroethics
- Pediatric Neurology
- Neurosurgery
Background:
- Pediatric deep brain stimulation (pDBS) is increasingly used for treatment-resistant dystonia in children.
- Limited empirical neuroethics research exists for responsible pDBS implementation in pediatric populations.
Purpose of the Study:
- To identify pressing ethical challenges and potential solutions for pediatric deep brain stimulation (pDBS) from clinician perspectives.
Main Methods:
- Semi-structured interviews were conducted with 29 clinicians caring for pediatric patients with treatment-resistant dystonia.
- Thematic content analysis was used to identify salient ethical concerns.
Main Results:
- Clinicians highlighted uncertainty regarding risks/benefits (72%) impacting informed decision-making.
- Ethical navigation of decision-making roles and integrating diverse stakeholder perspectives were key concerns (52%).
- Information scarcity affecting informed consent (52%) and narrow regulatory status/access (24%) were also identified.
Conclusions:
- Clinicians face ethical limitations due to a lack of informational, regulatory, and financial support.
- Supported decision-making and enhanced data sharing are proposed solutions to address these challenges.
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.
