Seizing Hope: High Tech Journeys in Pediatric Epilepsy

Please join us for the world premiere of Seizing Hope: High Tech Journeys in Pediatric Epilepsy!

5:00 PM – 6:15 PM PDT
Wednesday, July 6, 2022
VIFF Centre, 1181 Seymour St., Vancouver, BC V6B 3M7
RSVP to the event here: https://seizinghopefilmvan.eventbrite.ca

Can new technology bring hope to children who have drug-resistant epilepsy?

More than 500,000 children in Canada and the USA have epilepsy. About a third of those children continue to have seizures despite taking anti-seizure medications, also known as pediatric drug resistant epilepsy (DRE). Surgery may be one option for them, but what if there is another option that is less invasive or more effective? What if new technology can bring hope to children who have DRE?

EVENT TIMELINE
4:15PM Doors open
5:00PM Screening starts
5:45PM Panel and Audience Q&A
6:15PM Public event ends

MODERATOR:
Judy Illes, CM, PhD, FRSC, FCAHS
Professor and UBC Distinguished Scholar in Neuroethics
Director, Neuroethics Canada
University of British Columbia

PANELISTS:
Patrick J. McDonald MD, MHSc, FRCSC
Associate Professor and Head, Section of Neurosurgery
Section Head, Neurosurgery, Shared Health Manitoba
Department of Surgery
University of Manitoba

Johann Roduit, PhD
Science Communicator, Producer, and Founding Partner of Conexkt

Please note that seating is general admission and is first-come, first-served. Tickets obtained through registration at Eventbrite do not guarantee guests a seat at the theatre. Theatre is overbooked to ensure a full house.

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ABOUT SEIZING HOPE
Families with children suffering from pediatric drug resistant epilepsy (DRE) face complex realities. In a world guided by the promises of technology, the goal of Seizing Hope is to raise awareness about the options offered by different technologies specifically for the brain in complement or as an alternative to treatment with medication. As the directors and producers of this mini-documentary, we want to empower and improve decision-making by exploring values and priorities through the lens of the families and doctors who care for them. We compiled the stories of four families with children who have pediatric DRE to shed light on their hope, trust, and empowerment journey.

The views and research presented in this documentary represent a multi-year neuroethics project funded by the National Institute of Mental Health of the USA National Institutes of Health, BRAIN Initiative.

CREDITS
Neuroethics Canada UBC, with funding from the NIH/NIMH BRAIN Initiative (#RF1MH117805-01) in association with Conexkt Innovation Studio And Cassiar Film CO. present Seizing Hope.
Featuring the Bagg, Chartrand, Thompson, and Cowin families.
Executive Producers Dr. Judy Illes and Dr. Patrick J. McDonald.
Produced by Dr. Johann Roduit. Directed by Adam Wormald.

Learn more at https://www.seizinghopefilm.com/

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A Two-Component Ethics Approach for Triage to Epilepsy Monitoring Units

Jason Randhawa, MD
Neuroethics Canada Blog

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Electroencephalographic (EEG) monitoring provides critical diagnostic and management information about patients with epilepsy and seizure mimics. Admission to an epilepsy monitoring unit (EMU) is the gold standard for such monitoring in major medical facilities worldwide. In many countries, however, access is challenged by limited resources compared to need. Triaging EMU admission in these circumstances is generally approached by unwritten protocols that vary by institution. In the absence of explicit guidance, decisions can be ethically taxing and are easy to dispute.

Drawing upon the limited triage literature from neurology and then moreso from various areas of medicine more broadly, my mentors and I developed an ethically-grounded two-component approach to EMU triage (Randhawa et al., under revision, 2021). The strategic component identifies three targets to guide improvements in EMU wait list infrastructure at the institutional level: (1) accountability to patients and public to foster transparency, (2) engagement of clinicians and administrators to achieve process improvements, and (3) empowerment of waitlist managers to promote active waitlist management strategies (see Figure).

The principled component applies an essential balance of three key moral philosophies to triage at the patient level. First, prioritarianism promotes the needs of the most ill, defined by seizure frequency and severity; however, it may also include subjective measures such as suffering. Second, utilitarianism maximizes the overall utility of resources, promoting the greatest benefits for the most people. If patients are having frequent seizures, they are more likely to benefit from EMU evaluation (utility) and are considered sicker (priority); therefore, these first two ethics principles work together. The principle of justice promotes equality by considering other relevant contextual factors such as patient’s ability to self-advocate and length of wait. This principle provides further refinement to the triage process. For example, patients who are disabled by frequent seizures may be unable to advocate for themselves to obtain a sooner admission despite the high utility and priority. As such, justice provides further impetus for accelerated admission.

These principles will be weighted differently depending on several contextual factors, such as the availability of adequate resources: high-resource settings favor prioritarianism; low-resource settings favor utilitarianism. Other factors affecting the use of these principles include patient and public values, clinician preferences, and objective metrics available to guide these decisions.

The approach we propose can inform site-specific process improvements and further revisions based on data generated at individual institutions. While much work remains to be done to explore and test implementation of the model, it provides a starting point in transforming implicit thinking about ethically-fraught circumstances related to EMUs into explicitly principled ones.

Acknowledgements to my research mentors Drs. Chantelle Hrazdil, Patrick McDonald, and Judy Illes for their substantial contributions. This work was supported in part by the UBC Faculty of Medicine, Vancouver Coastal Health Research Institute, and NIH/NIMH #RF1#MH117805 01.

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Jason Randhawa, MD, is a Neurology Resident Research Assistant at Neuroethics Canada. He is a senior neurology resident based out of Vancouver General Hospital and St. Paul’s Hospital at the University of British Columbia.