The Canadian health system is built on the myth of Medicare. The notion that health care is free in our country is, to be blunt, a lie.
There are many costs to health care here, including financial, physical and emotional tolls.
Medicare, Tommy Douglas' legacy to Canada, is rooted in the Canada Health Care Act. (1) The Act promises Canadians five principles: public administration, comprehensiveness, universality, portability and accessibility. Since the provinces and territories administer health care, our country actually has 13 different health systems. The federal government lightly regulates the Canada Health Act, and this is where the great Canadian lie of a strong, sustainable and universal public health system comes in.
You will have noticed when you go to a lab or x-ray that some health care is actually privately administered. This private administration is creeping into previously publicly administered sectors like surgical and medical offices too. Medicare is comprehensive and free only for hospitals and (most) physician offices. Everything else we pay for: mental health services, dental care, medication, rehab therapists, and even some physicians like podiatrists. Our government promises publicly funded services in areas like Pharmacare but this coverage is spotty and slow to be implemented. (2)
The only thing truly universal is the fact that you will have to wait. Waiting is our universal truth. Now we even have to wait to get on a wait list. Waiting is baked into the Canadian system.
As for portability and accessibility? If you live in a rural area, you know that most specialized health care is delivered in urban settings. And each province offers inconsistent services, so care is hardly portable from region to region.
My own travels in health care began 21 years ago when my youngest son Aaron was born. He was diagnosed with Down syndrome, which involved many appointments and screenings when he was a wee boy. As his caregiver, I became involuntarily immersed into the world of health care. Thirteen years later, I became a patient myself when I was diagnosed and treated for breast cancer.
As Aaron's mom, I quickly discovered there are many rules to successfully navigating the health care system. The first one was to be thankful for any scrap of care and be unfailingly well-behaved and polite. This is the Canadian way.
Whenever I spoke up to advocate for my son, or had suggestions for change, I was quickly labelled as difficult. My gender played into this stereotype, as the 'hysterical mother' often gets minimized and dismissed. This 'hysterical' trope resurfaced when I was diagnosed with breast cancer, for I often felt as insignificant as a little mouse in my oncologist's office.
As an introvert, the notion that patients have to advocate is an uncomfortable one for me. (3). It was easier to put on the persona of a Mama Bear for my son, but I didn't have this role to hide behind when I became sick with cancer. As the perennial caregiver, I was used to caring for others, not caring for myself. Asking for help from health professionals or even my own friends or family was difficult for me, and I took any rejection hard.
Alas, advocacy is mandatory. If you are a patient or caregiver in Canada's health care system, you cannot assume all is well. Your physician faxes a referral to a specialist or for a test and you don't hear back? Follow up. Call the office. Speak to booking clerk.
Don't assume that your referral is moving along. As brilliantly depicted in the short film Falling Through the Cracks: Greg's Stories (4), referrals can fall into black holes with devastating results.
The lack of patient-facing technology to ease our lives is shocking. I can book an appointment with my hair stylist much easier than I can get an appointment with my doctor. In health care, I have to fax referrals to get a mammogram, call clinics and be stuck in impossible phone trees that don't offer a human to speak to, be told to show up to appointments without consideration of my own schedule, and be told that I'd be charged if I'm a few minutes late.
I found myself at the mercy of receptionists when I had cancer. I kept my phone by me at all times in case they called from their unknown numbers. As a freelance writer, it was nearly impossible to work during treatment, not just because of my physical and mental state, but because I had to be on-call at all times to travel into the city for an unpleasant but critical follow up appointment. The cancer hospital I attended was stuck in the 1970's and physically mailed my radiation appointment times on little handwritten cards that showed up randomly in my mailbox.
The burden on patients is a real thing, as outlined in Victor Montori's book The Patient Revolution (5). Although the book is American, we have more in common with the American system than you think. Just because we aren't as 'bad' as the American system, doesn't mean we can't be better.
The whole Canadian health system is as hostile to patients as the airline industry. We climb on board, our heads down in the long queues, enduring the misery until it is done.
The distinct lack of joy in health care is obvious to patients, as we see our health professionals sink further into burn-out and moral distress. Staff well-being and patient well-being are intertwined, but this correlation is rarely talked about. There is a competition of suffering about who has it worse in health care - staff or patients. If
only we worked together to infuse more humanity into the system we'd start on a path that would help heal us all.
This article must end on hope! Many of us have no choice but to be involved in the health care system. We want to quit health care, but we can't. I wrote a book called Ducks in a Row: Health Care Remagined, which is a call for a shift from the corporate model in health care back to the foundation of caring for each other as human beings. It centres on what us as individuals can do to make health care a more human space.
The good news is that we have each other. Do not add to the siloes yourself -consider all patients who are invested in health care for whatever reason or diagnosis as your people. I might have had breast cancer, and you have a heart condition, but our experiences in the system are likely eerily similar. We are so much stronger if we speak up together.
I recently wrote a final chapter for a book called Breaking Canadians (7), which is about the COVID-19 pandemic. I offered cautious hope, and I want to gift hope to you too.
As a patient, my hope lies at the nuggets of humanity that I receive at the point of care and being involved in organizations to educate about the patient experience.
If a health care professional - and anybody who works in health care is a professional - shows me compassion, I say thank you. I make the time to write thank you notes and send them to the person involved and their manager. When I give feedback, it is constructive feedback; I say what went wrong and the ways I wish it could be better. I welcome teaching of students, whether it is at the bedside or in front of a class, because much of my hope lies in future generations. I tell my story, as you are doing in this magazine, to help foster an understanding of my patient experience.
I might not be able to talk to the health minister or set health policy, but I can encourage folks to put the care back into health care. You can do that too, by supporting other patients, giving space to share stories and gifting the health system both kind words and constructive feedback.
As a patient, I often feel powerless, but I believe in my heart that we gain back our power by working together.
Footnotes:
This essay was originally published in Life in Hearts Magazine, on page 8. Thank you to Editor Jackie Ratz for permission to reprint this article.