SUBJECT: The triage protocol for access to intensive care must respect the human rights of people with disabilities
Prime Minister, Minister of Health and Social Services,
I am writing to you to express my concerns regarding the Triage Protocol for Access to Intensive Care (adults and pediatrics) and the Allocation of Resources, such as Respirators, in an Extreme Pandemic Situation, currently distributed to health professionals across the province of Quebec.
According to this document, the presence of certain medical and social conditions (including disability) in a patient makes him de facto ineligible for intensive care, without any need for a more thorough evaluation by a triage committee. Among the specific conditions targeted are "severe cognitive impairment (total inability to carry out activities of daily living and domestic life independently) due to progressive illness", as well as neuromuscular diseases, such as Parkinson's and amyotrophic lateral sclerosis.
These exclusion criteria fail to respect the fundamental rights guaranteed by the Charter of Human Rights and Freedoms, the Canadian Charter of Rights and Freedoms and the Convention on the Rights of Persons with Disabilities. They are based on discriminatory biases that a specific disability necessarily indicates a poor prognosis for short-term survival. In addition, they leave the door wide open to misinterpretation by medical personnel not to mention clinically unjustified and abusive decisions.
Any exclusion criterion based on the assessment of an individual's functional autonomy, their ability to dress and eat alone, to move around without help, and then to conclude whether or not they may be entitled to care necessary for its survival, poses important ethical and legal dilemmas. Whether they are made in the context of a health emergency or not, clinical decisions should never be based on judgments on the social utility value of an individual with a disability or prejudices about their poor quality of life. As the United Nations points out, "[t] he scarcity of resources [...] should never justify discrimination against certain groups of patients".
In addition, certain clinical evaluation tools, like the "Clinical Frailty Score" which appears in the protocol as an exclusion criterion, are not suitable for people with disabilities and are likely to disqualify them without grounds during the triage process. For example, a patient who is incapable of articulating words intelligibly or who has a motor impairment due to a pre-existing disability will obtain an excessively high frailty score. This does not reflect a low probability of survival.
Finally, the fact that a person living with a specific condition may require certain adaptation measures during or after treatment in the intensive care unit, such as a longer period of time to be weaned from the ventilator, does not constitute an admissible basis for being excluded. On the contrary, the duty to accommodate described in the Charter of Human Rights and Freedoms and the Canadian Charter of Rights and Freedoms requires that a person be provided with a certain level of additional care so that they may have a fair chance at survival. A person with a disability should not be penalized for disabilities that require the allocation of more resources to achieve a result similar to that of a person with no disability.
In recent weeks, several countries have removed disability-related exclusion criteria from their protocols after being found to be discriminatory. Therefore, I ask you to act and revise without delay the Triage Protocol for Access to Intensive Care (adults and pediatrics) and the Allocation of Resources, such as Respirators, in an Extreme Pandemic Situation so that it conforms to the pertinent laws and principles of human rights. .
In particular, I ask you:
- That the exclusion criteria referring to specific handicaps (such as cognitive impairment, Parkinson's disease and amyotrophic lateral sclerosis) be removed from the Protocol;
- That clinical evaluation tools relating to functional autonomy (such as the Clinical Frailty Score or the Functional Autonomy Measuring System) not be used to exclude a patient from intensive care;
- That the Protocol offer the guarantees necessary for preventing discriminatory prejudices on the value of a disabled person’s life being included implicitly during the triage process. An explicit statement to that effect should also be included;
- That the necessary accommodations for the disability will be in place, during and after critical care, so that people with disabilities have an equal opportunity to receive, understand and benefit from this care;
- That persons with disabilities and their representatives can participate in the revision of the Protocol;
- That the Ministry of Health and Social Services be more transparent about the triage process for access to intensive care implemented in Quebec, in order to preserve public confidence.
Thank you for your attention and for taking my concerns about protecting those most vulnerable into account.