Last month, Toronto’s board of health declared anti-Blackness a public-health crisis, referencing a long history of subjugation reflected in many public systems — including housing, policing, employment, and education — while highlighting the disproportionate number of Black people affected by COVID-19.
Anti-Blackness is a social determinant of health. It has negative impacts on our mental and physical health, influences the quality of health care we receive, and plays a role when governments neglect to investigate our distinct health risks.
While systemic racism can increase the frequency with which we are brought to a hospital’s doors, it can also permeate our experience after we step inside. During the pandemic, when Black patients are more isolated and vulnerable than ever, what are we doing to address anti-Blackness in health-care delivery?
Racism in health-care delivery can take many forms. It can include health-care workers failing to appropriately respond to a Black patient’s pain and assuming we are seeking opportunities to get high. It can look like mental-health patients being over-diagnosed and over-psychiatrized or killed by police. In the United States (Canada does not frequently gather race-based data), Black women are three times more likely to die than white women during childbirth.
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Anti-Blackness in health care also takes the quiet, but deeply pernicious, form of repeated microaggressions, instances in which patients are undercut, dismissed, or insulted.
I was hospitalized twice during this pandemic. During the first admission, I was diagnosed with a blood disorder. When my sister dropped me off at the ER (no accompaniment during the pandemic is permitted unless a patient requires support, such as language interpretation), I had a slight fever, so a COVID-19 test was administered. I spent the night in urgent care, and the next morning I was told there was a bed available for me upstairs. Then, without explanation, I was brought to an area the nurses called the “COVID ward.”
Once in the room, my nurse said it was safe for me to take off my mask. Before doing so, I asked if my room partner had tested positive for COVID-19. I was told that couldn’t be disclosed. I asked if it might be prudent to keep my mask on, and my nurse said she did not know. She gave the same response when I asked if it was safe for my fellow patient and I to share the single washroom.
I asked her why she was the first health-care professional attending to me not wearing personal protective equipment — and why her colleague was not wearing a mask. She told me that she was conserving PPE stock and that surgical masks were sufficient protection, given that the infection is transmitted through droplets.
She seemed ill-informed and visibly annoyed with my concerns, and I started to panic. Meanwhile, the symptoms of my disease and my treatment’s side effects were wearing me down. Petechiae (red dots) covered my body; large, blood-filled blisters covered the inside of my mouth. I had migraines from the intravenous immunoglobulin treatments intended to raise my platelet count, and I was worried that the steroids working to suppress my immune system’s attack on my body would make me more susceptible to infections, such as COVID-19.
I was also nervous because I had had this disease once before, when I was five years old. At that time, doctors said I was not expected to survive.
Then, in a tone that suggested I was being unreasonable, my nurse asked, “What is it that you want me to do?” I suggested she find some PPE, as her colleagues had in urgent care, and call a doctor.
This wasn’t the only time I felt neglected while hospitalized during the pandemic. It wasn’t the only time I worked through the calculus so common for Black, Indigenous, and racialized people: Am I being unreasonable? Is this normal? Am I being treated this way because I am Black? In reading experiences of other Black patients during COVID-19, I know I am not the only person suffering through the math. Later, I felt somewhat validated when my doctor told me that the way I had been treated was completely unacceptable.
The pandemic has illuminated and exacerbated many disparities and caused greater harm to already vulnerable populations. Black patient care must be added to the list of worsening shortfalls and receive careful consideration, because issues related to quality of care can be questions of life and death. Normally, self-advocacy for a Black patient can be a lot to think through. In a pandemic, isolated in an overstretched hospital, it can feel devastating.
Many advocates and experts have long called for measures to address anti-Black racism in health care, including health-equity training for medical workers and a Black Health Strategy. There have been pushes to create more pathways for Black students into medicine. Research indicates that a more representative workforce improves patient outcomes on a number of fronts, including medication adherence, wait times, and patient perception of treatment decisions.
Experts have also called for culturally competent care. This need is especially great in Canada, given reports such as this one from the Wellesley Institute, which states that “Canadian physicians believe that they are immune from the kinds of racial bias exhibited by their colleagues to the south.” It also says that “residents viewed medicine as ‘culture-free’ and were unwilling to consider the cultural frameworks that underlie medicine.”
The value of cultural and contextual understanding in medicine was never clearer to me than it was last summer, when I spent several weeks at Toronto’s Centre for Addiction and Mental Health. One evening, a personal-support worker came into my room and encouraged me to open up more.
Like me, this PSW was Black, Muslim, and about 30 years old. We had a shared lived experience. She said things that resonated with me, fostering trust and understanding. I felt seen, and I spoke more freely about my circumstances. Once we finished, she had a responsibility to fill my nurse in on my status.
Moments later, my nurse entered my room, visibly angry. She told me that, based on the PSW’s report, she had concluded I was a danger to myself and so she would have to conduct a search for objects I could use to harm myself. This was unfounded. The PSW later confirmed that these actions did not align with the assessment she had provided. The nurse began to build a pile of items she intended to confiscate — floss, tampons, and more. Before leaving my room, she said, “This is what happens when you choose not to talk to me.”
This encounter deeply upset me. I felt betrayed, further stripped of agency, and even more reluctant to discuss my problems than I had been before. It also created a rift between me and the PSW. She brought a competency to her team that her colleague chose to see as a threat to her ego, creating a missed opportunity in my care.
While I saw many thoughtful and professional health-care workers last summer, hostile and even racist encounters have been an ongoing part of my mental-health-care journey.
I made it through my lowest points, and through challenging treatments like electroconvulsive therapy, because of the support of my family and friends. My sister spent every morning in the hospital with me, while friends visited every afternoon. They provided emotional support and helped me make difficult choices about my treatment plans and moving my life forward.
We need to find ways to ensure that critical relationships and supports are maintained during isolated patient care in the pandemic. The gaps in care for Black people have existed and will continue to exist when COVID-19 is behind us. While the solutions require long-term efforts and resources, the stakes are never higher than when patients are alone, in pain, and more vulnerable than ever.