Until ethical and legal concerns for people with disabilities are addressed, it’s premature to laud the protocol while it’s still being redrafted.
This article has been translated into French.
In their recent Policy Options article, “It’s time for Canada to follow Ontario’s critical care triage protocol,” Cal DeWolfe and Jocelyn Downie tout the Ontario triage protocol as a model framework to be adopted by the rest of Canada for a unified approach if a second wave of COVID-19 infections overburdens the medical system. They assert that Ontario’s drafting process and the substantive content of its protocol are superior to those of other jurisdictions.
These statements are problematic. This protocol raises a myriad of ethical and legal concerns that have been flagged, in particular, by organizations defending and advocating for the rights of persons with disabilities. The protocol is still being redrafted, and until it addresses these concerns, it is premature to laud it.
As members of a disability rights organization that has been directly involved in challenging the drafting process of the protocol and several of its triage criteria, we have serious concerns about the protocol and its process of development.
The claim that Ontario’s protocol, unlike others, was drafted in an admirable and transparent process following inclusive consultation is factually incorrect. Ontario’s triage protocol was drafted by a bioethics table in early to mid-March 2020 without public consultation. The bioethics table, set up by Ontario Health (the province’s health care coordinating agency), was composed of bioethicists and physicians. No representatives from any marginalized groups were invited to participate in the process. The resulting protocol, dated March 28, 2020, was quietly distributed to hospitals all across Ontario, seemingly as a final version to be used by institutions in a situation of resource scarcity during the pandemic.
The existence of a protocol became public knowledge only when several organizations, including ARCH Disability Law Centre and some media outlets, surreptitiously acquired a copy of the protocol and reported on it. On April 8, ARCH delivered an open letter to the Ontario government, signed by over 200 disability rights organizations and over 4,800 individuals, demanding, among other things, broader consultations. The Ontario Human Rights Commission wrote a letter to the minister of health, voicing concerns about the lack of consultation on the drafting process and the potential discriminatory impact of the protocol. Only then were consultations considered.
Despite ARCH’s repeated recommendations to the bioethics table — it followed up the April correspondence with more letters in May and July — and the Ontario Human Rights Commission’s reminder of the need for inclusion, the process has remained under-inclusive. To our knowledge, consultations have taken place exclusively with a select group of vocal representatives from the disability community. Until July, the bioethics table had not consulted with any members of the Black community, Indigenous people or members of other racialized communities. Again, to our knowledge, since July, the bioethics table has consulted with one person representing the Black community. To label this an inclusive consulting process is misleading.
The failure to consult widely is especially disconcerting since data has made clear that Black people and persons from other racialized communities are disproportionately impacted by COVID-19. Likewise, it is a glaring fact that persons with disabilities, especially those living in long-term care homes, already bear the brunt of the impact of this virus.
DeWolfe and Downie assert that Ontario’s protocol avoids “common” forms of discrimination. To the contrary, we need only consider the triage protocol’s framework to understand the discriminatory nature of this document.
The Ontario protocol lays out a framework by which patients would be excluded based on a set of criteria. The exclusion criteria place heavy emphasis on the “progression” of disabilities, conditions and illnesses as a determining factor in whether a person will be granted admission to an ICU or will be excluded from life-saving treatment. Many disabilities are progressive in nature, but this characteristic does not in every case contribute to whether a person would recover from COVID. Moreover, by singling out progression as an exclusionary criterion, the triage protocol opens the door for problematic value assessments about quality of life and human worth.
Further, the triage protocol is based within a framework of (medical) utilitarianism: its objective is to create the maximum good for the maximum number of people. This principle often leads to adverse impacts for persons with disabilities because those who are not able-bodied are less likely to be part of the group that receives the “good” in question. In fact, COVID emergency responses based within a utilitarian framework have been criticized as “ruthless” and at odds with societal values of defending and advancing the rights of marginalized communities. Without a shift away from utilitarianism, the triage protocol will almost always result in some form of discrimination.
DeWolfe and Downie contrast the Ontario triage protocol with Quebec’s triage protocol to demonstrate that the former is not discriminatory, as opposed to the latter, which is, they say. This is a puzzling statement since the Quebec protocol is largely based on Ontario’s triage protocol and substantially similar.
Perhaps the most disconcerting aspect of DeWolfe and Downie’s article is that they are silent about the discriminatory nature of the protocol’s ineligibility criteria. These include the clinical frailty scale (CFS), which the Ontario protocol uses as a metric to determine eligibility for critical care. Rather, they imply that the use of this scale demonstrates Ontario’s prowess in avoiding common scientific errors. They thereby disregard the foundational human rights principle that a scientific basis for a standard does not render the standard — or, in this case, the scale — non-discriminatory.
Moreover, DeWolfe and Downie fail to acknowledge that the use of the CFS on persons other than those for whom it was designed and tested — namely, elderly persons — has not been scientifically validated. In the United Kingdom, the triage protocol was revised to explicitly preclude the use of the CFS on any patient under the age of 65 and on any person with long-term disabilities. The Specialised Clinical Frailty Network of the UK’s National Health Service has clearly stated that the CFS has not been widely validated in younger populations (below age 65) and cautions against applying the CFS to persons with disabilities. Some medical professionals have also expressed their concerns about the use of a CFS score as a “pivot point” to define a frail state in situations where it is uncertain whether a patient will benefit from ICU care.
The CFS was designed to prevent unconscious bias and stereotyping based on age from colouring a doctor’s medical decisions. This is a valid objective. But it makes no sense to use a scale designed for improving care for persons over 65 as a means of excluding persons with disabilities from receiving critical care in a pandemic.
The Ontario triage protocol as currently drafted does what persons from disability communities and those from marginalized communities have been decrying for decades: it fails to consider how medical policies prioritize access to health care, and in this case critical care, for those who are able-bodied and white.
Ontario must do better. And until it does, praising Ontario’s triage protocol as world-leading and one that should be followed by the other provinces is misguided. This protocol stigmatizes and risks harming persons from society’s most marginalized communities.