Whether it’s for access to intensive care, surgery or COVID-19 vaccination, disabled people continue to face discrimination.
(This article has been translated from French.)
In a country like Canada, which aims to provide equitable access to health care for all its citizens, the pandemic has created deep divides and inequities among historically marginalized and vulnerable groups. As a result, people with disabilities have been disproportionately affected by the repercussions of this health crisis, but governments have so far completely ignored them and have done nothing to mitigate these negative effects on them. On the contrary, recently adopted prioritization strategies have contributed to exacerbating inequalities.
Faced with fears of overload in intensive care and lack of material and human resources, the government of Quebec developed in March 2020 a prioritization protocol for access to intensive care. If this unprecedented resource allocation method were to be applied, some patients would be denied access to intensive care so that priority could be given to a patient whose chances of survival are deemed superior. This is a major shift in the traditional approach to care, since based on a unilateral medical decision without prior consent, the “weakest” people will be “sacrificed.”
A first version of this triage protocol included a systematic exclusion of patients with “moderate or severe cognitive impairment” due to progressive disease. In addition to constituting an unacceptable form of discrimination, such an exclusion criterion also promoted cognitive bias among physicians by suggesting that the government supported a decision to disqualify a patient who was assigned a lower quality of life or lower value. Following the mobilization of disability rights groups, the government agreed to revise the protocol. The new version includes several improvements, including the removal of all exclusion criteria referring to disability.
Fears of unjustified discrimination against persons with disabilities remain, as the protocol leaves a great deal of discretionary power to physicians in charge of evaluations.
However, fears of unjustified discrimination against persons with disabilities remain, as the protocol leaves a great deal of discretionary power to physicians in charge of evaluations. It encourages them to look beyond the clinical parameters set out in this document, “as some conditions not listed may also affect the prognosis or risk of prolonged ventilatory withdrawal.” Therefore, there is a real risk that the decision to exclude certain patients from access to intensive care is made under the guise of “clinical judgement,” to mask a set of biased (and often unconscious) assumptions about the poor quality of life or frailty of people with disabilities.
The paternalistic attitude of the medical profession towards people with disabilities is a well-known and well-documented phenomenon. People with disabilities are perceived as more fragile or having a low quality of life. Many doctors are reluctant to start an invasive treatment for a person with a disability for fear that they will not be able to withstand it or that it will only serve to “prolong a life of lesser value.”
To illustrate this cognitive bias, one need only look at the practice of organ transplant allocation, which is very similar in Canada and the United States. Intellectual disability and lack of functional autonomy (the ability to dress, feed oneself and move around on one’s own) are among the criteria that can make a patient ineligible to receive an organ. This position of the medical profession is based, among other things, on the misperception that a person with a disability has a lower quality of life and would not benefit as much from the procedure as a person without a disability.
Although the organization responsible for ensuring equity in organ allocation has set clinical guidelines, these criteria leave considerable discretion to physicians. Ultimately, the decision-making process often remains very opaque, making it all the more difficult for patients to challenge it in court. In both Canada and the United States, the number of patients disqualified because of an intellectual disability remains unknown. However, some cases of discrimination have already been brought to the attention of the media, including that of Amelia Rivera, a girl from New Jersey who was denied a transplant in 2013.
Although it is conceivable that the triage protocol for access to intensive care will never be applied, it will, alas, be impossible to protect people with disabilities from the consequences of the prioritization approach adopted in surgery. Indeed, the protocol used to establish a triage system for patients requiring surgery is already in use in all Quebec hospitals and will likely remain in effect for many years to come.
Following a utilitarian logic, this protocol gives priority to patients who have the best chance of recovering quickly after their surgery and to those who require the fewest medical resources. Inevitably, people with disabilities are likely to be disproportionately affected by this triage procedure, since doctors will have to evaluate, according to their own perception, the length patients’ recovery time and the resources needed to treat them. Once again, this clinical assessment may be tainted by conscious or unconscious bias against patients with disabilities.
No protocol should perpetuate, let alone exacerbate, existing inequities, especially regarding Constitutionally unacceptable reasons for discrimination, such as disability.
On the other hand, the scope of these two protocols, one for intensive care and the other for surgery, goes beyond the simple routine management of care. A committee of experts, however competent and conscientious, should never have the power determine on its own triage criteria that will have such a significant impact on our society. Indeed, such criteria require a rigorous, diverse, and transparent consultation process that must include elected officials, university researchers from various disciplines, as well as representatives of patient groups and marginalized communities. All the more so since these protocols set a precedent in terms of resource allocation and will certainly serve as a guide in the event of similar future events (natural disasters, epidemics, for example).
While it is unrealistic to expect triage protocols to eliminate all systemic barriers, no protocol should perpetuate, let alone exacerbate, existing inequities, especially regarding constitutionally unacceptable reasons for discrimination, such as disability. In this case, the prioritization approach must recognize the disadvantage it creates for certain groups of people and correct the situation. To do otherwise would be to deny the very essence of the right to equal opportunity and to relegate this fundamental norm to the status of an optional rule.
At this stage, it is probably futile to try to convince the government to reconsider its strategy for allocating medical resources, even if it has a disproportionate impact on people with disabilities. However, some form of balance can still be restored if the government acts upstream, as it can minimize the risk of people with disabilities contracting COVID-19 by giving them access to the vaccine as soon as possible.
Unfortunately, the immunization campaign that began several weeks ago in Quebec does not prioritize people with disabilities. This decision is difficult to justify considering the many studies showing that people with disabilities are more likely to be hospitalized and die from COVID-19, especially those with Down syndrome or intellectual disabilities.
For example, an international survey found that a 40-year-old person with Down syndrome has a similar risk of death from COVID-19 as an 80-year-old without Down syndrome. In addition, people with disabilities are more exposed to the virus, since many of them live in institutions or group homes, where they receive care that involves close physical proximity to health-care workers and caregivers. It is as if, paradoxically, the vulnerability of people with disabilities no longer exists outside the framework of triage protocols for access to intensive care and surgery.
The protection of human rights and the promotion of equity are fundamental principles of Canadian society. Even in times of crisis, our prioritization procedures should reflect our values and be based on consultation and public engagement that is inclusive, transparent, and open to genuine societal debate. Otherwise, the risk of exacerbating structural injustice and hurting the most vulnerable in our society becomes inevitable.