Last night, I attended a screening of ‘Seizing Hope – High Tech Journeys in Pediatric Epilepsy’ at the Peter Gilgan Centre of Research and Learning at the Hospital for Sick Children in Toronto.
The evening was remarkable through the presence of a girl with epilepsy and her mother. I noticed them right away when I came into the auditorium and saw the girl in her wheelchair. I thought “Ah, a patient” and walked on.
Being an anthropologist by training and a market researcher for Canadian pharmaceutical companies and someone who does not spend much time in academic settings any more, two things struck me as remarkable in the set-up of this event:
Everyone was wearing a mask – “of course, we’re at a hospital” I thought.
Everyone in the auditorium had a microphone on their desk and the house lights were on the audience, whereas none of the panelists upfront had a microphone and no lights were illuminating them. I wondered whether this was a glitch in setup or reflective of the medical professionals’ attitude – “it’s not about me, it’s about the patient”.
The movie ‘Seizing Hope – High Tech Journeys in Pediatric Epilepsy’ which follows four families in their journeys leading up to and after getting a neurostimulator device implanted in their child’s brain, was both informative and touching. The most touching moment for me was when one of the mothers describes how her then four-year old daughter first got epilepsy. She lost the ability to walk, talk, deteriorated back to baby status and no longer recognized her as her mom. Any parent can feel the heartbreak that that entails.
I had seen an epileptic seizure before, but I did not realize the profound impact that the disease has on those affected, including families. This thoughtfully and gently composed movie is highly effective at communicating this. In addition to introducing new technologies that have the potential to help people with drug-resistant epilepsy, it really brings home the dire need for treatment and the equally important need to support families in their support of the patient.
However, real life is an even more effective teacher than any movie can be.
As the mother in the audience who had been in the movie was invited to the front to be part of the panel discussion, it was clear than her daughter also wanted her place in the spotlight (which wasn’t actually turned on, as mentioned before…). She walked up to the moderator and said hi, …and continued to make comments to her mom, the doctors she knew, her family members in the audience, and did not want to sit back down and listen. While the movie had talked about the impact on families, watching the family try to enable the panel discussion to move forward drew me and the other audience members right up close and into the experience.
But that was not all.
Towards the end of the event, when the girl had actually sat back down with her grandmother, she had a seizure. Her family, including her younger brother, immediately sprang into action, assisting her and dealing with the situation like the experienced support team that they are.
While most of the audience members turned to watch the event, I directed my gaze towards the pediatric nurse, neurologists, and neurosurgeons at the front. Clearly, they were torn between their assigned roles as panelists to wait and continue the discussion and their instinct as healthcare professionals to jump in and help. Several got up and sat back down again, struggling with the decision. A couple called out ‘Are you ok?’ to the family. Finally, one, the moderator, walked over and assured himself that the family was ok and able to cope on their own with what was occurring.
This cluster of family members around the girl in peril – their expert handling of the situation, from the oldest to the youngest person – this brought home more than anything to me how epilepsy affects lives.
- Doctors wear many hats. They are first and foremost caregivers, focused on making patients feel better and keeping them safe. They are also scientists, exploring new frontiers of medicine. And finally, they are advocates. It became clear in the panel discussion that access to new medicines and new technologies can be a huge issue and doctors play a role in advocating to governments and sometimes even to the manufacturers of these medicines and devices to make them available in Canada.
- A film about patient experience is a powerful tool for education and advocacy. The four families whose lives were shown in the film had requested that it would strike a balance between authoritative voices and compassionate portrayal, and it did. It was informative about the new technologies and the ethical dilemmas inherent in them, as well as successful at showing the profound impact of the disease and at fostering empathy for those affected by it.
- First-hand experience is even more powerful than a movie. Watching the girl interact with her doctors and nurse, observing their responses, seeing the concern in their eyes when the seizure happened and witnessing the family’s rush to help was something that a lay person like myself is unlikely to forget.
Why was I at that event? Just a desire to see something new, after a long pandemic-induced hiatus. I have done some market research in neurology in the past, and would like to engage more with companies in the field, so I thought it would be a good idea to get some more exposure to an area within neuroscience.
What did I learn that could benefit my clients? Patient voices can be powerful advocates for bringing new medicines and technologies to Canadians, but physician voices also play an important role.