Ethical Considerations in Pediatric Epilepsy Surgery

By Lauren R. Sankary, BA; Paul J. Ford, PhD; and Kathryn L. Weise, MD, MA

Pediatric epilepsy surgery may be considered after medications have failed to adequately control seizures to allow an infant, child or adolescent to achieve developmental milestones and/or mitigate negative side effects of multiple antiepileptic drugs. Surgical approaches involve removing areas of the brain that generate intractable seizures or severing connections that propagate seizures, yet surgery may leave the patient with new physical deficits such as some degree of hemiparesis or visual field defects. Because of the difficulty in balancing the benefits — better seizure control on fewer or no medications — against surgical risks and potential life-altering physical changes, evaluation of potential epilepsy surgery candidates at Cleveland Clinic integrates ethical considerations as part of patient management and educational practices.

Building ethicists into the epilepsy surgery team

Pediatric epilepsy surgical patients receive comprehensive care by a multidisciplinary team of epileptologists, surgeons and related specialists. Consultants within the Neuroethics Program provide expert ethical input during the decision-making process. At the Epilepsy Center’s request, ethics consultants regularly attend epilepsy surgery evaluation committee meetings and meet with families and patients as requested to ensure a balanced and ethically sound approach to decision-making.

While ethics consults are neither mandatory nor automatically initiated by formal triggers, ethics consultants become involved in approximately 10 percent of cases as part of an integrated approach and are called upon as specific needs arise. The embedded presence of ethics within the epilepsy team at Cleveland Clinic is distinctive among epilepsy centers across the country.

Applying core principles in an illustrative case

Some of the most challenging cases are those in which parents of young infants must make difficult decisions regarding whether to proceed with surgery for epilepsy. In one illustrative case, a young infant born with hemimegalencephaly developed refractory status epilepticus that could be controlled only by a medically induced coma. When other alternatives proved unsuccessful and the risks of prolonged intensive care measures mounted, the epilepsy team decided to offer hemispherectomy, acknowledging concerns that the patient’s small size and young age substantially increased the mortality risk associated with surgery.

The epilepsy team requested ethics involvement to help ensure parental and team consideration of the moral aspects of this kind of decision. In providing decisional support for the distressed parents of this newborn, the consulting ethicist sought to ensure decisions were supported by the following principles:

1. Transparency about the balance of benefits and burdens to respect deeply held values and commitments of all stakeholders. In this case, reasons to undergo surgery were complicated by uncertainty around the likelihood of a successful outcome and even how such an outcome would be defined for this patient and her family. In speaking with the parents, the consulting ethicist clarified expectations about the procedure and its potential outcomes to ensure the decision to proceed with surgery was consistent with this family’s values and goals of care. Involvement of the ethicist as an impartial party also supported the team’s goals of careful, unbiased consideration of risks, benefits and alternatives.
2. Promotion of trust and a therapeutic alliance. The ethics consultant supported understanding of the proposed surgery by clarifying that hemispherectomy is not an experimental surgery but also is not commonly performed on such small children. Clarifying this distinction between clinical care and research promoted trust and communication between the healthcare team and the infant’s parents.

A role in tailoring informed consent

Ethical evaluation ensures that informed consent practices are tailored to the complexity of the contemplated surgery and the potential vulnerability of surgical candidates. Concern about the balance of best interests and potential risks or burdens is heightened if the surgery is particularly innovative, when the risks of a standard surgery are unusually high or when few medical alternatives to surgery are available.

At whatever age the patient presents, the epilepsy team considers whether it is medically and ethically permissible to offer a high-risk surgery with known benefits and complications that impact many spheres of the patient’s social and physical functioning. Although parents generally have full authority to give permission for surgery, it is important to involve a child or adolescent in understanding the illness and promoting decision-making at a developmentally and cognitively appropriate level, while at the same time carefully addressing and protecting the interests of a patient who may lack capacity for complex decisions. Allowing higher-functioning adolescents the opportunity to understand and assent, or agree, to elective procedures demonstrates respect for them as persons and helps them develop decision-making skills they will need moving forward.

A realm where ethics loom especially large

Decisional support is particularly valuable in the context of pediatric epilepsy surgery due to the complex relationships among young patients, families and healthcare providers. Ethics consultants play an important role in supporting clinicians, patients and families facing complex decisions about whether to proceed with surgery in the treatment of epilepsy and other complex decisions in pediatric neurological care.

Ms. Sankary is a volunteer research assistant in the Cleveland Clinic Department of Bioethics and Neuroethics Program, where she is beginning a neuroethics fellowship in July 2017 following her graduation in May from the Case Western Reserve University (CWRU) School of Law and the Master’s Program in Bioethics at the CWRU School of Medicine.

Dr. Ford (fordp@ccf.org) is Interim Chair and a staff consultant in the Cleveland Clinic Department of Bioethics, Director of the Neuroethics Program and a staff member in Cleveland Clinic’s Epilepsy Center.