Can we please make Quebec healthcare more user-friendly?

Nothing brings home the message more effectively that bureaucracy is where common sense goes to die like being forced to deal with it.

I recently had to make a medical appointment for an electrocardiogram (EKG) for my mom. Nothing too complicated. The medical specialist emailed me the note that was needed to book the appointment. I called her local CLSC where a receptionist quickly brushed me off and told me that without a family doctor (my mom’s family doctor recently retired and, at the age of 76 and with a chronic illness, she is now on a waiting list for one) she would have to get the test done at the nearest hospital. Okay then. Next.

I call the hospital and was transferred to the cardiology department, where a recorded message informed me that I needed to email the doctor’s note to make an appointment. The voice then proceeded to give me the address.

This is the email: labocardio.hclm.cisssmc16@ssss.gouv.qc.ca

A total of 32 letters and 2 numbers over the phone. Seven S’s. Crissssssse… I had to call three times to write it down properly and make sure it was accurate. I speak three languages, am university-educated, work in a field that requires me to conduct research daily, consider myself of average intelligence (some might, perhaps, debate that) and I still had to call three times (call the main help line, get connected to cardiology and wait for the message) to get this email right, while fighting the urge to throw my phone out the window. The number 16 in the email address also indicates there are at least 15 other exact emails like this one out there, torturing others in various CISSS territories.

A system with no thought for the disadvantaged

Can you imagine a senior who is hard of hearing? A pre-Bill 101 anglophone Quebecer with a limited knowledge of French (the message is not given in English), a recent immigrant who might not have someone close to them to help them navigate the system? An isolated person who is dealing with serious health issues that might make them nervous, exhausted, impatient, easily confused? Seeking medical help for yourself or for a loved one is a frazzling experience all on its own. Why do we need to make it so much harder?

I’m not writing this to necessarily complain about our healthcare system — although there’s plenty to improve on. I appreciate the system and the people working in it. They perform miracles daily, and I am in constant awe of their perseverance, patience and ability to make lemonade out of underfunded lemons. With very few exceptions to the contrary, I have always been treated kindly and politely when accessing healthcare services. I’m grateful for universal health coverage in Canada and think that people going bankrupt or needing to Crowdfund to pay for medical bills (a routine occurrence in the U.S.) is inhumane. Access to life-altering and life-saving medical care is a right and not a privilege and I have been lucky enough to live in two countries (Greece and Canada) that support that belief.

What I’m talking about are bureaucratic absurdities. The way administrative decisions are devoid of common sense and a basic understanding of the human element; how we continuously fail to humanize healthcare because we don’t allow ourselves to see it from the point of view of the patient. In no universe where users were consulted and taken into consideration would a system requiring you to call for such an absurdly long email address like that exist. It’s practically Kafkaesque!

I recognize that COVID has complicated matters and our healthcare system has had to make an incredible number of quick adjustments to continue treating patients. More things are being done over the phone or via email than before. A mountain of articles has already been written about the very real consequences this pandemic has wreaked on people’s physical and mental health, and how it’s made accessing healthcare for illness (acute or chronic) a million times more difficult. Healthcare practitioners have been sounding the alarm about how patients with serious and sometimes-life-threatening ailments have fallen through the cracks.

But this supercalifragilisticexpialidocious email that almost made me snap is the result of a system that favours bureaucrats over patients. It’s a supreme example of how we fail to treat people at their most vulnerable and stressed with basic consideration.

Top-heavy bureaucracy is no laughing matter

Quebecers have long giggled over the acronyms for our Integrated Health and Social Services Centres (CISSS) and our Integrated University Health and Social Services Centres (CIUSSS) that were supposed to provide increased accessibility and better quality services. We also shake our heads at what a tongue-twister CHSLDs (another cumbersome acronym for the province’s long-term care homes that have been in the news this past year, mostly for all the wrong reasons) can be. But bureaucracy is far from a laughing matter. Often, it kills.

Many pandemic deaths in Quebec can be attributed to our convoluted mess of a system. Sure, an unpredictable deadly virus, staffing shortages and a lack of PPE played a major role. But many critical errors and patients falling through the cracks can also be attributed to a burdensome bureaucracy and decades of austerity measures by previous governments that decimated and amalgamated services, and which the current government has done little to rectify.

After the deadly outbreak at the Ste-Dorothée CHSLD, where more than 100 residents died of the virus, a government investigator concluded the bureaucracy was “too large, too distant from reality on the ground where quick decisions were necessary.” It was ultimately too top-heavy, too slow-moving, too removed from patients’ and staff’s daily reality.

“We deplore the fact that no one from upper management set foot on the site,” the report read.

Bloated and often ineffective bureaucracy isn’t our only problem if we don’t ensure that the patient, or the user (in my case) is centred. For most of us, accessing healthcare will be one of the most complicated and stressful times of our lives. Whether dealing with an illness or caring for an aging parent or sick child, it can be a complicated, time-consuming and harrowing time. So why have we practically ensured that it has an awful user interface?

Empathy and understanding go a long way towards improving the system and making it more human-centric. Designing products and services with the patient in mind seems like such an utterly simple and obvious concept, and yet…

Centering humans first

As a second-generation allophone who has already navigated the healthcare system with one aging parent and is now doing it all over again for another, I am particularly sensitive to matters of accessibility. The decision-makers at the top need to understand that not everyone speaks the majority (or even the minority) language perfectly, that seniors have physical and cognitive accessibility and comprehension issues, and many of them do not have access to a computer or even know how to Google for healthcare information online.

And these problems are hardly limited to Quebec’s allophones or anglophones. A whopping 19% of all Quebecers are illiterate and 34.4% have serious reading difficulties. Thousands more live all alone and isolated. A bureaucrat can’t assume from the perch of their corner office with their education and the world on their iPhone that everyone else (particularly older generations with often limited schooling) can also do the same.

And it’s not as simple as “find someone to help you.” Have you ever been around the stubborn pride of a senior starting to lose their independence? They will fight you every step of the way and deny they are incapable of doing something on their own. If our system can’t make it easier for them to function in it, they will often choose not to seek help at all or delay medical treatment until it’s too late.

If healthcare can’t be accessed in a fair, timely, compassionate and efficient way, and if people from all walks of life and backgrounds can’t get the care they deserve and are entitled to, it hardly matters that it’s free. ■

Read more editorials by Toula Drimonis here.