I’ve filled out dozens of death certificates as a doctor. But the form overlooks crucial health information

I still remember the feeling I had the first time I filled out a death certificate. The profound sense of unease and self-doubt. I needed to get it right.

I got a call in the early evening from the nurse about a palliative patient on our floor that just died. I was to pronounce the patient and fill out the appropriate paperwork.

The death didn’t come as a surprise. He was an 85-year-old man diagnosed with stage IV colon cancer last year.

He had seen a host of doctors and decided he didn’t want treatment that would sacrifice his current standard of life. Nor did he desire life-sustaining measures such as CPR or intubation if critically ill.

He continued to golf and refused to let his diagnosis stop him from living his life to the best of his abilities with the support of his loving family.

He came into the hospital with a bowel obstruction which caused him to aspirate gastrointestinal content into his lungs. He eventually died from pneumonia.

His family was by him the entire time and he died without pain. It was a dignified death of a patient who described his life as full.

The Ontario medical death certificate features three sections for physicians to fill out: information about the deceased, cause of death, and certification. The first section includes: name, sex, age, and place of death.

The causes of death are detailed as immediate cause of death, antecedent cause of death, and underlying cause of death. The last section outlines the writer’s medical designation.

I landed on immediate cause: respiratory failure; antecedent cause: aspiration pneumonia; underlying cause: metastatic colon cancer.

Over the past few years, I repeated this process dozens of times.

However, as time has gone on, the death certificates I’ve filled out more and more felt inadequate to capture the conditions of someone’s life that shaped their death. I saw trends in patient populations that were not afforded the opportunity to live out the full potential of their life.

At our cancer centres I did the paperwork. Fifty-two-year-old female, causes of death: “respiratory failure; malignant pleural effusion; metastatic breast cancer.” Real causes: “poverty and poor access to screening mammography.”

In our trauma centres I did the paperwork. Forty-five-year-old female, causes of death: “trauma, pedestrian vs car.” Real cause: “home insecurity.”

Twenty-five-year-old male causes of death: “hemorrhagic shock; gunshot wound to the abdomen.” Real cause: “systemic racism.”

For patient confidentiality, these details and those of the subject of my first death certificate have been altered, but in essence, these scenarios have played out dozens of times during my training

All lives seemingly cut short. Barely any sociodemographic information captured on the death certificates.

Despite our Canadian system being a universal publicly-funded system for all, through the years I’ve noticed how the social determinants of health shape outcomes for patients. Disease and health outcomes are not distributed equally within our society.

In the height of the second wave of COVID-19 I was redeployed to the critical care unit at St. Michael’s Hospital. Located in the heart of downtown, that patient demographic represents the most vulnerable, marginalized, and racialized patients in Toronto.

Time and time again I filled out certificates related to the virus with a sense of inaccuracy. Certainly, acute respiratory distress syndrome and respiratory failure was the biomedical cause of death but more important were social factors such as poverty, marginalization, employment, and housing.

These factors were not colour-blind. A report on COVID-19 from Public Health Ontario demonstrated that from 2020 to the end of 2021, people from racialized communities experienced 4.1 times higher rates of hospitalization, 3.7 times higher rates of ICU admission and a 4.9 times higher rate of death.

I began to ask myself why the death certificate was not providing a complete picture of who is dying in our city? Realizing the unequal impact of COVID-19, England added ethnicity to the death certificate. Why not initiate that process here?

There are valid arguments against the broad sweeping collection of race-based data in Canada. We need to be careful about sensitive information we gather from people, particularly vulnerable groups or those who have faced historical and present-day marginalization.

In addition, once the data has been collected there needs to be well-informed, culturally appropriate efforts to make positive tangible change. This discussion is different than other sentiments.

A mantra I grew up listening to was “I don’t see colour.”

This framework dismisses factual evidence which demonstrates public policies that result in social, economic and health inequity.

The Canadian Public Health Association has said, “Canada remains a nation where public policies and institutions create harm for individuals and communities based on race, religion, culture or ethnic origin.”

When we ‘see colour’ in our educational system, we see Black students have been more likely to be streamed into special education and applied programs.

When we ‘see colour’ in the labour force, we see Black men are overrepresented by a margin of 2.6 to 1 in jobs they were overqualified for.

When we ‘see colour’ in our urban housing market, we see pronounced discrimination in real estate, whether buying or renting.

When we see with colour in our policing system we see Black Torontonians are twice as likely to have a firearm drawn on them and 20 times more likely to be fatally shot. These are not isolated phenomena, and our health system is not immune.

The Canadian Institute for Health Information describes equity stratifiers as characteristics that can identify subgroups of populations who experience differences in health care that may be considered unfair or unjust. They include: age, education, gender, geographic location, income, Indigenous identity, racialized group, sex at birth.

Currently, the Ontario death certificate contains only three of these eight stratifiers. All should be collected to more accurately determine subgroups of Canadians that are dying at disproportion rates in our society.

In a system that strives for universal and equitable access to care, we need measures that can help us determine where we are missing the mark.

Like other jurisdictions such as British Columbia, let’s start with race and ethnicity. Our discussion about race-based data should not be about whether we collect it but rather around how we best collect it accurately, equitably, and use it to shape policy that best serves the entire population.

To me the “I don’t see colour,” and “identity politics are tearing us apart” arguments fall short, in the face of this substantial evidence.

They represent idealistic standards for which we have not yet reached. We need to accurately measure the performance of our health care system through a critical social lens. Let’s save that rhetoric for once we’ve met our benchmarks.

Like the first patient I ever filled out a death certificate for, all Canadians deserve the opportunity to meet their full potential and live out meaningful dignified and full lives. Let’s take a step in the right direction this Black History month.

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