The deadly danger of ableism in health care during a pandemic
Biased assumptions about living with disability could impact access to life-saving care, advocate says
These are stressful times and front-line workers have laboured heroically in this pandemic. However, heroes have Achilles' heels.
Triage is one.
Statistics Canada says 22 per cent of Canadians live with disability, which, I believe, means ableism in medicine affects more than one-fifth of Canadians, whether they realize it or not.
Here are some things to consider when questioning where and why ableism exists.
Triage prioritizes treatment to maximize survival rates. However, it can also cost lives.
After the Oct. 1, 2017, mass shooting in Las Vegas, Dr. Kevin Menes dealt with about 200 of the shooter's 411 victims.
With only 10 seconds to triage each patient, top priority victims were tagged red or green; they also had grey tags, usually meant for those still alive but not expected to live.
Ableism is to disabled people what sexism, racism and homophobia are to other marginalized populations- Ruth Enns
But Dr. Menes ignored that protocol. He instead required that they treat every live patient, regardless of perceived chances of survival.
All but 16 of them survived.
Dr. Menes' success was attributed to his superior knowledge of and experience with gunshot injuries. However, his success also reveals a gap in the ER staff's knowledge and experience.
Bias lives in this gap and skews survival predictions.
Biased predictions — like those based on ableism — along with the power to act on them can be deadly for those outside the accepted norm, such as disabled people.
Ableism is to disabled people what sexism, racism and homophobia are to other marginalized populations. It is ubiquitous, unrecognized and unrelentingly negative.
- Sees the disability, not the person.
- Treats non-disabled assumptions as facts, yet views of disabled people as ignorant and warped by disability.
- Patronizes, infantilizes, creates forced dependency.
- Appropriates the disability voice, handing it to the nearest non-disabled person (especially medical caregivers).
- Projects non-disabled fears onto disabled people, equating disability with low quality of life, suffering, burden and proximity to death. (In other words, better dead than disabled.)
- Is blind to resilience. While it is normal, natural and life-affirming to avoid becoming disabled, it is also normal, natural and life-affirming to adapt to life with disability.
Ableism in medicine
Despite good intentions, medical professionals harbour the same biases we see elsewhere.
We know about medical prejudice against marginalized groups, such as Indigenous people.
However, we hear little about ableism. This bias is built into not only our culture, but also into medical training and professional protocols. For example:
Distancing: Medical professionals have to distance themselves from their patients, but when does appropriate professional distancing switch to a threatening "Eeuw?"
Terminology: Medical terminology can distance and demean. Words such as "patient" presume passivity and unquestioning compliance, leaving the medical professional as the authority figure. Assistive technology emphasizes dependency, rather than adaptation.
Benefit/burden judgments: With medical education focusing on disorders and deviation from the accepted norm, could medical students be led to see disabled people as just a burden on the utilitarian benefit/burden yardstick? Do biased perceptions prevent medical professionals from distinguishing between burden to the patient and burden to others?
Double standards: Frequently, medical interventions perceived as beneficial to non-disabled people are perceived as burdensome to disabled people. Rather than prolonging life, the interventions are seen as prolonging the dying process.
Health or disability: Our society equates disability with diminished health.
In some cases, increasing disability does indeed indicate declining health (for example, neurodegenerative diseases). Nevertheless, many such people live full and fulfilled lives, defying dire predictions.
Since everyone has biases, ableism is ubiquitous; and since we are blind to our own biases, how can health-care professionals distinguish between disability and health? If they can't make that distinction, how can they regulate themselves against bias in triage?
Medical personnel as disability experts
Surely no one assumes that a male gynecologist is an expert on being a woman.
Yet non-disabled caregivers, especially medical caregivers, are assumed to be the experts, not only on caregiving, but also on life with disability.
If medical personnel make decisions based on preconceived notions of life with disabilities, such as quality of life, are they not straying beyond their expertise into bias?
Ontario and Quebec recently released pandemic triage protocols to deal with overloaded intensive care units.
Of the four steps outlined on CBC's The Current (Jan. 18), the first two should raise alarm bells.
Priority goes to those perceived most likely to benefit and those mostly likely to leave ICU sooner, and those not nearing the end of their so-called life cycle.
Only greater education, increased awareness and a willingness to change can decrease ableism - Ruth Enns
With pre-existing double standards and low expectations of benefit and life expectancy for disabled people, these protocols disproportionately target this population.
Dr. Eugene Bereza, physician and ethicist at the Centre for Applied Ethics at McGill University Health Centre, said people who could live will die. Dr. Paul Warshawsky, chief of adult critical care at the Jewish General Hospital in Montreal, said "We're already very adept at these conversations."
To those refusing to follow these guidelines, they offer the chilling reassurance that with time they will get used to this kind of thinking.
Protocols not only facilitate quick decision-making, they also diffuse responsibility.
The only restraint on such thinking is conscience.
Conscience cannot be dropped when personal protective equipment is put on, to be picked up again when the pandemic is over. Once the unthinkable becomes commonplace, it's permanent.
Is Bill C-7 being rushed through Parliament to facilitate such protocols? (Bill C-7 would amend the Criminal Code to permit medical assistance in dying for those whose natural death is not reasonably foreseeable.)
Combating ableism in pandemic
All we can do during this pandemic to evade medical ableism is to wash our hands, practice physical distancing, wear masks and get vaccinated.
Only greater education, increased awareness and a willingness to change can decrease ableism in medicine and everywhere.