Ethical Issues in Pediatric Epilepsy

Abstract

Medicine frequently comes up against ethical dilemmas, for which there are no clear “right” answers. This special issue aims to highlight some of those occurring in pediatric epileptology and raise awareness of potential frameworks to aid clinicians. What readers may recognize through the papers presented is that despite the contributors coming from a wide geographical range, there are recurrent themes that appear throughout 21-century clinical practice. A child who may benefit from surgical interventionmaybe living in theUnited States, Spain, Italy, Romania, and so on, and similar discussion may be required involving health care professionals (HCPs), the patient, and patient advocates. Similar questions arise regardless of country: How much weight should be given to patients’ requests? Who ultimately decides on current treatment? If the patient cannot make a contribution, who should be their representative? Howdowebalance the “pros and cons” of a particular therapeutic regime? Is it ethical to try pediatric patients on drugs that have not been licensed for use in children? Despite the cultural pluralities in the countries represented, the same dilemmas emerge. This suggests that there is a need for an overarching understanding of medical ethics in a way that can be practically employed by the HCPs wherever they work. It would be nice to have a flowchart telling HCPs which “morally correct” action should be taken in each situation, but this unfortunately is not possible.What is possible, however, is that practitioners are equipped with knowledge about moral theories and ethical approaches that enable them to make ethically sound (and justifiable) decisions, which take into account cultural, social, religious, and legal pluralities. These types of considerations are vital for developing ethically justifiable decisions. It is by learning various approaches to medical ethics that the practitioner can navigate their field. The practice of medicine was, at least initially, considered to be an art. Although science has helped medicine develop therapies, diagnostic tests, and classification of diseases (for example), the importance of medical ethics demonstrates that the clinician still needs an ability to practice their art. The hypothetical questions listed above are unsurprisingly present in the papers included in this issue. There are also particular themes that emerge (again, regardless of geographical region), showing that there is a need for HCPs to be fully ethically equipped for their role in pediatric epileptology. A quick check of medicine legislation in many countries highlights the separation of licensing drugs for pediatric use and adult use. In this issue, Rose et al’s contribution on clinical trials and use of various epilepsy treatments in pediatric patients go some way to examining whether this is simply a regulatory issue or whether children may be thought of as “little adults”with regard to pharmacokinetics and pharmacodynamics, asking whether pediatric clinical trials for some treatments may be unnecessary. A clash between the legal and physiological meaning of “child,” Rose et al argues, places medical treatment of children with epilepsy in a somewhat precarious position, balanced between pharmacology and legislation. Continuing on this theme, Vintan provides the relevant example of Dravet syndrome. Stiripentol has been previously shown to be effective for this condition, alongside valproate and clobazam. However, the Summary of Product Characteristics for Diacomit (the United Kingdom licensed stiripentol medicine) states that its use in younger children must be carefully monitored and that data are limited regarding the use of stiripentol in infants under 12 months of age. Clinicians are therefore expected to use their discretion when prescribing for very young children. At the end of the piece, Vintan highlights that parents of these childrenmust be kept informed of possible new treatments, efficacies, and adverse events. Informed consent has long been a cornerstone of medical ethics and is essential when guiding parents and patients. As Vintan points out, HCPs realize that desperation for symptom reduction may significantly affect the autonomy of decisions made.