The province must clearly commit to upholding its ethical and legal obligations to people living with a disability when ventilators are in shortage.
(This article has been translated from French.)
Following serious public criticism, most recently by the Liberal MNA Jennifer Maccarone, of the intensive care triage protocol developed under the auspices of Quebec’s Ministry of Health and Social Services (MHSS), experts who participated in drafting the protocol rushed to defend it against allegations of discrimination. In fairness, the protocol does not exclude someone for the sole reason of having a disability such as autism, as the MNA seemed to suggest. But it does, in my opinion, nevertheless violate the principles of equality and equity contained within the Quebec Charter of Human Rights and Freedoms and the Canadian Charter of Rights and Freedoms.
The Quebec protocol, which has yet to be deployed, is largely based on a draft protocol from Ontario. The latter was circulated among Ontario healthcare institutions in April. Following complaints from disability rights advocacy groups and a letter from the Ontario Human Rights Commission, the Government of Ontario declared that the protocol was not a final, approved version, and suggested that consultations would be held with organizations representing people with disabilities. Unfortunately, there are still no developments on this front.
Quebec’s triage protocol, itself also criticized for a lack of transparency and public consultation, is, in my opinion, more discriminatory than the one proposed in Ontario (and which has since been scrubbed from official institutional websites). My comments here are based on an analysis of the protocol that the assistant deputy minister of MHSS sent to one of my colleagues following his Access to Information Request. This document contains appendices in which exclusion criteria based on a clinical fragility scale are spelled out, as well as references to specific conditions, both of which are absent from the version of the protocol available on the Quebec College of Physicians’ website. This lack of transparency is in and of itself problematic—might it reflect a hesitation on the government’s or the College of Physicians’ part to publicize a protocol that is liable to cause controversy?
Remember that these triage protocols are meant to facilitate decision-making in crisis situations during which a shortage of ICU beds might arise. With these protocols, governments tend to mandate an interdisciplinary committee to determine the allocation of limited resources to patients, following pre-determined priorities and criteria. The protocols are meant to avoid putting doctors in the position of making individual, case-by-case triage decisions on the fly. Based on the degree of shortage of ICU beds (and ventilators), patients who might normally qualify for treatment in the ICU are rendered ineligible, while they continue to receive non-critical and palliative care. As the objective of these protocols is to maximize the absolute number of survivors, the key exclusion criterion is tied to mortality rate estimates of the patients who are in need of treatment.
Why am I, like some of my colleagues and some disability rights organizations, of the opinion that the Quebec protocol is discriminatory? We should first note that the more exclusion criteria refer to long-term life expectancy, the more they have a disproportionate effect on the elderly and people living with disabilities (many of whom have reduced life expectancies), and the more there is a risk that decision-making will be influenced by judgments about the value and quality of life — consciously or not. Even if Quebec’s triage protocol criteria rest primarily on short-term survival, medium- and long-term life expectancy are also taken into consideration when a choice must be made between two people who have an equal chance of surviving the acute illness. We thus see the deployment of criteria that go far beyond the odds that a patient will survive the clinical event for which a ventilator is required. On this point, the protocol goes beyond the scope of Ontario’s, given that the latter does not mention overall life expectancy.
Like the Ontario document, the Quebec protocol that we obtained makes explicit reference to scales of fragility, which are based on general statistical survival rates established in other contexts of care. Based on these criteria, a person with reduced mobility, or who needs help to do their groceries, and certainly someone who is dependent on personal care, would be excluded from intensive care in a situation of critical shortage, based on the presumption of a limited chance of surviving treatment requiring a ventilator. (This probably explains MNA Maccarone’s concern, that a patient with a serious form of autism could be excluded when a fragility scale is being used.) People suffering from Parkinson’s, amyotrophic lateral sclerosis, or a progressive cognitive deficiency (think of Alzheimer’s) are therefore also explicitly excluded. Thus, in a situation of critical shortage, even someone with a mild case of Parkinson’s would not be granted access to a ventilator. To exclude someone from intensive care based on specific health conditions—having previously established that these might suggest weaker chances of survival—strikes me as discriminatory, even if the protocol in question leaves some room for individualized clinical decision-making.
According to existing jurisprudence, norms or general tests that result in the exclusion of people based on a disability can be discriminatory, even if these norms are considered scientific and objective. The Supreme Court has thus ruled that it is discriminatory, for instance, to refuse a driver’s licence to someone afflicted with homonymous hemianopia, which is characterized by a loss of peripheral vision. The Court ruled it unreasonable to refuse this person the right to an individual examination, which could have provided him the opportunity to prove that he could drive safely.
In fact, a personalized evaluation can allow a person living with a disability to “escape” statistics that otherwise have a discriminatory effect. While it is true that one of the goals of these protocols is to render decision-making more effective by providing objective criteria, equality rights require that efforts be made to accommodate persons living with disabilities. Furthermore, some of the protocol’s presumptions, for instance those concerning survival rates tied to specific conditions, seem particularly concerning in the context of COVID-19, given the general state of uncertainty and lack of representative statistics.
The skepticism people with disabilities feel toward medical decision-making is rooted in history and their own life experiences. Even if a person’s odds of surviving ventilator treatment are limited, especially in the context of COVID-19, and even if it may therefore be very reasonable for them to renounce it, a protocol officially excluding persons with disabilities from a last chance at life carries with it a heavy symbolic burden.
Precisely for this reason, the triage protocol should explicitly state that all medical decision-making must avoid discrimination based on grounds spelled out in the Charter. Such a declaration would help raise awareness of the risk that ableist assumptions might easily influence the medical decision-making process. Criteria that are not tied to the clinical event in question cannot serve as motives to determine priority access to care. The triage protocol should also explicitly recognize the duty to accommodate—an essential feature of equity—by allowing, for instance, a person living with a disability to receive additional support in order to benefit from a higher chance of survival in intensive care.
The risk that a shortage in ICU beds could create devastating ethical dilemmas is a good reason to develop clinical triage protocols. These protocols can justify extraordinary measures for exceptional circumstances. But it is essential to have a transparent public debate on these measures, one that directly implicates the people most affected by prevention and triage policies. That we should have to go as far as an Access to Information Request to obtain a copy of guidelines that touch on measures as crucially important as clinical triage protocols in ICUs is highly inappropriate.
A pandemic crisis should never be an excuse to lose sight of the fundamental principles of equality and equity in the formulation of official policies, and even less so when an illness already has as disproportionate an impact as COVID-19 does. In the midst of this pandemic, the dedication and care we show toward those among us living with disabilities—and particularly to their inclusion and accommodation—can only serve to reveal the depth of our social commitment.
This article is part of the The Coronavirus Pandemic: Canada’s Response special feature.