An Ethical Framework for Deep Brain Stimulation in Children

Benjamin Davidson, MD; Lior M. Elkaim; Nir Lipsman, MD, PhD; George M. Ibrahim, MD, PhD


Neurosurg Focus. 2018;45(3):e11 

In This Article

The Population: Ethical Challenges in Vulnerable Patients

The pediatric population being considered for DBS is complex and vulnerable, requiring a high level of case-specific ethical appraisal. Ethical criteria for DBS in vulnerable adult populations have been published:[24] 1) adequate discussion of patient selection, 2) provision of an evidence-based rationale that exceeds a standard of reasonableness, 3) demonstration of the disease burden, 4) transparency in informed consent, 5) multidisciplinary review of individual cases, 6) adequate oversight of all aspects of the research, and 7) routine scheduled evaluations focused on ethical aspects of the trial design.[24] While many of these principles apply to the conduct of DBS in children, several unique pediatric considerations should be recognized.

Children may not be able to articulate their wishes due to intellectual immaturity or neurocognitive disability, leaving caregivers to make difficult decisions. In cases in which the child has not yet declared their interests, decisions are based on the child's presumed best interest rather than their right to autonomy and self-determination.[1,20] Such decision-making spans not only the perioperative period, but also subsequent decision points such as device programming, further treatment, and potential revisions.[20] Depending on the child's age and abilities at initial intervention, he or she may begin assuming a greater role in subsequent decision-making, an evolution that all stakeholders within the circle of care must anticipate.

There is no accepted age at which children are deemed competent and capable of medical decision-making. Competence is more often associated with prior experience rather than a specific age.[2,20] Beginning at age 7 years, children with a prior surgical history are often asked to participate in decision-making.[1] In the case of DBS, there is usually no prior experience, and few such cases have been performed; therefore, advice and experience from family support groups with related experience are limited. Children with prior non-DBS surgical experience might participate better in consent discussions regarding general surgical risks, but would be unlikely to have added insight into the specifics of undergoing DBS.

In some cases, there is a dilemma between early versus delayed intervention to allow the child to better participate in decision-making. A delay in treatment may result in undue harm from disease sequelae, such as musculoskeletal deformity from spastic conditions,[6,28,29] worsening epilepsy, and so forth. Early intervention is most warranted for conditions with strong evidence such as primary DYT1 dystonia, but is less indicated where evidence is heterogeneous such as in secondary dystonia.[25] The concept of "double jeopardy" may apply: First, these children suffer as a result of their disabilities, and second, lower priority is given to treatments that may improve their quality of life.[18] A "relational" view of decision-making holds that treatment (and evidence for and against intervention) should be considered within the context of the child's subjective experience with the illness.[12,20,39] Consultation with medical bioethicists may be prudent to maintain the strictest standards for patient care.