By Roxanne Mykitiuk and Trudo Lemmens
With rapidly rising infection rates due to COVID19, provincial and territorial health care officials are bracing themselves for situations of extreme shortage of critical care beds, medical equipment and personnel necessary to treat the sickest of the sick in hospital settings. In a pandemic setting, triage is the allocation of treatment and scarce resources to patients according to a pre-determined set of criteria or priorities in order to achieve a specific goal.
This goal is most often maximizing the number of survivors, but can also, in times of extreme health care crisis, include the survival of essential health care personnel. But who gets left behind?
Persons with disabilities fear and distrust priority setting in medicine – and you can understand why. They worry that priorities, or the way access criteria are interpreted and applied, will put people with disabilities at or near the bottom of the priority list. History and the personal health care experiences of people with disabilities fuel these fears.
Some provinces have drafted clinical triage guidelines for decision-making in circumstances of extreme shortage, to avoid decisions being made by individual physicians on the fly. The Canadian Medical Association has also recently issued a framework for such decision-making. Triage guidelines set out selection criteria, and a decision-making procedure by triage committees.
Under these scenarios, patients who otherwise would receive critical care resources will be ineligible according to various scenarios of scarcity, even though they should continue to receive non-critical and palliative care.
It is important that key ethical and human rights obligations towards people with disabilities be affirmed in clinical triage policies. People with disabilities must not be sacrificed based on faulty presumptions and stereotypes about living with disability.
While decisions need to be made to prioritize the allocation of scarce resources to individuals more likely to benefit from treatment, people with disabilities must not encounter discrimination in seeking life-sustaining treatment. Their lives are equally valuable to those living without disabilities.
Any triage decisions reflecting a devaluing of the lives of people with disabilities or based on ableist presumptions about quality of life or on long-term survival are discriminatory.
Priority setting criteria solely based on the presence of a disability violates provincial human rights legislation and the Charter of Rights and Freedoms. Disabilities, unrelated to near-term survival, cannot be criteria for prioritization decisions under COVID-19 triage guidelines.
We recommend the following to ensure the rights of persons with disabilities:
Triage guidelines should explicitly emphasize the need to avoid discrimination on the basis of human rights grounds. The presence of a disability, including a significant disability, is not a permissible basis for giving people lower priority for intensive care.
Criteria unrelated to near-term survival cannot be used as a basis for priority setting or resource allocation decisions.
Survival estimates should be restricted to survival of the event for which the critical care intervention, such as a respirator, is required. Estimates beyond this risk opening the door to evaluative decisions about the value of a life with a disability.
The fact that a person with a disability may require accommodations during treatment, including intensive care, or to perform activities of daily life outside of treatment, are not a permissible basis for giving that person a lower priority for care.
It’s critical, of course, that all decisions about priority setting must be informed by evidence-based clinical criteria, and not based on stereotypes or assumptions that people with disabilities experience a lower quality of life or that their lives are not, or no longer, worth living.
Decisions should also not be based on stereotypical assumptions about survival chances of people with disabilities.
All guidelines about priority setting must state that persons with disabilities who use ventilators in their daily living and seek medical attention in hospitals with COVID-19 symptoms will be permitted to continue to use their personal ventilators and will receive COVID-19 treatment. The personal ventilators of persons with disabilities who come to hospital with COVID-19 symptoms must not be reallocated.
When guidelines refer to frailty scales that correlate with short-term survival in determining priorities, doctors should not assume that a specific diagnosis or disability is indicative of poor near-term survival.
Provinces and the CMA should be lauded for drafting triage policies to facilitate challenging pandemic decision-making. But they should do so with transparency and invite public input. Above all, they should ensure that guidelines live up to human rights standards. We have concerns that some of the proposed guidelines do not.
It always requires some effort to safeguard human rights. But it can take a pandemic to force our hand and lay bare the depth of our commitment.
The situation surrounding COVID-19 is changing steadily and the above conditions and regulations may have altered since the date of publication
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