Assessing the value of a life: COVID-19 triage orders mustn't work against those with disabilities
Governments need to affirm ethical and human rights obligations to persons with disabilities
This column is an opinion by Roxanne Mykitiuk and Trudo Lemmens. Mykitiuk is professor at Osgoode Hall Law School and director of the Disability Law Intensive Program at York University. Lemmens is professor at the Faculty of Law and the Dalla Lana School of Public Health at the University of Toronto. For more information about CBC's Opinion section, please see the FAQ.
With the rapid rise in infection rates due to COVID-19, provincial and territorial health care officials have been bracing themselves for situations of extreme shortage of the critical care beds, medical equipment and personnel necessary to treat the sickest of the sick in hospitals.
In a pandemic setting, triage is the allocation of treatment and scarce resources to patients according to a set of criteria or priorities in order to achieve a particular goal. The key goal is to make the most efficient use of available resources to maximize the number of survivors, and in times of extreme health care crisis it can also 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. History and often personal health care experiences of people with disabilities fuel these fears. They worry that priorities or the way access criteria are interpreted and applied, whether deliberately or through oversight, will put people with disabilities at or near the bottom of the priority list for care.
Many jurisdictions, including some Canadian provinces, are drafting clinical triage guidelines for decision-making in circumstances of extreme shortage, to avoid such decisions having to be made by individual physicians on the fly. The Canadian Medical Association has also issued a more general framework for provincial guidelines.
Triage guidelines identify various selection criteria, in particular for access to ventilator support, and a decision-making procedure most often involving triage committees.
Draft Ontario guidelines and the CMA framework emphasize that clinical prognosis of mortality should guide triage decisions. They do not explicitly deprioritize people because of an existing disability — but they don't just focus on whether patients will likely survive the acute illness for which they require a ventilator or other critical care resources.
Guidelines that go beyond a prognosis of survival of the acute COVID-19 related event tend to disproportionately affect people with disabilities. They also facilitate "ableist" presumptions about survival chances or quality of life after ICU treatment seeping into clinical evaluations.
The CMA framework suggests prioritizing people with a "reasonable life expectancy," and among those with equal survival chances, those with more life years left. Elderly patients and many with disabilities thereby risk getting the short end of the stick.
The Ontario draft guidelines use a score system to categorize those with lower survival chances, including months after ICU treatment. Progressive cognitive impairment, neurodegenerative diseases such as Parkinson's and ALS, and clinical frailty due to a progressive illness, are given scores that deprioritize people with those conditions as candidates for ventilation.
The Ontario guidelines also recommend withdrawal of ventilator support of those at higher mortality risk, in order to prioritize those at lower risk, depending on the level of scarcity. For example, under the most serious shortage scenario, a 60-year-old patient with moderate Parkinson's would be refused access to a ventilator or be withdrawn from it in favour of one without this condition.
The guidelines emphasize that patients who would become ineligible should continue to receive non-critical and palliative care. They also rightly emphasize the importance of frank discussions about low survival chances, so that patient can decide to forego invasive ventilator treatment.
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 have to battle discrimination when seeking life-sustaining treatment. Their lives are equally as valuable as those living without disabilities.
It is important that key ethical and human rights obligations towards people with disabilities, including duties to accommodate, be affirmed in clinical triage policies. People with disabilities must not be sacrificed based on faulty presumptions and stereotypes about living with disability. On the contrary, a duty to accommodate may require providing them with some level of extra care to ensure that they receive a fair chance of survival in critical care.
Any triage decisions that reflect a devaluing of the lives of people with disabilities or which are based on "ableist" presumptions about quality of life or on long-term survival are discriminatory and violate provincial human rights norms. Disabilities that are unrelated to near-term survival cannot be criteria for prioritization decisions under COVID-19 triage guidelines.
The following precautions would help ensure the rights of persons with disabilities:
- Triage guidelines should explicitly emphasize the need to avoid discrimination, and to adhere to human rights standards. 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 specific critical care intervention, such as a ventilator, 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 in order to perform activities of daily life outside of treatment, are not a permissible basis for giving that person a lower priority for life-saving care.
- It's critical 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.
- Decisions should also not be based on stereotypical assumptions about the survival chances of people with disabilities. 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. The duty to accommodate may in fact require making additional efforts to give people with disabilities an equal chance of survival.
- All guidelines about priority-setting must state that persons with disabilities who use ventilators in their daily living and who seek medical attention in hospitals due to COVID-19 symptoms will be permitted to keep and continue to use their personal ventilators, and will receive COVID-19 treatment.
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, guidelines should live up to human rights standards. 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.