Much of the covid-19 pandemic messaging focuses on protecting those who are at high risk of catching coronavirus more easily, developing complications of the illness and dying, but efforts may have the opposite effect. In the current healthcare crisis, there is more demand for healthcare services than there are available resources, necessitating the development of Intensive Care Unit (ICU) triage protocols. These protocols are used to prioritize who has access to the ICU where there is constant care by highly trained healthcare professionals and access to life support equipment such as ventilators. Such triage protocols ensure a standardized allocation of scarce resources, maximizing lives saved.
Triage protocols commonly use a combination of factors in determining who has priority to the ICU, looking at who can benefit from access to such care, the health of the individual patient vis-à-vis chance of survival from the critical illness, as well as expected survival post-treatment. However, triage protocols designed to help those in most need are disadvantaging people with chronic illness or disability without appropriate evidence or rationale.
Triage protocols are developed by governments, usually involving consultation with specialized healthcare professionals, as well as legal experts. Protocols may include specific inclusion and exclusion criteria to guide medical staff on the provision of resources during times of need. These exclusion criteria dictate who will not be considered when providing access to advanced care and treatment, For example, numerous US states, including Tennessee, exclude individuals with developmental disabilities and life-limiting illnesses. Drafted guidelines for the province of Ontario in Canada also excluded specific disabilities and individuals who require assistance and accommodation. In addition, there are stories from the UK about patients being designated Do Not Resuscitate (DNR) without consultation with the patient or their families.
Despite the importance of consistency and evidence-based medicine, triage protocols and these criteria show significant differences across jurisdictions. When in place, exclusion criteria tend to focus primarily on advanced age and pre-existing illness or disability, such as developmental disabilities, motor-neuron disease, dementia, life-limiting conditions, immunosuppressed status, rheumatic diseases and others. Although such exclusion criteria are widely implemented, there is often little to no evidence-based research to support their developments.
Assumptions about health and quality of life
These triage protocol exclusion criteria are based on able-bodied presumptions regarding the quality of life for people with disabilities and chronic illnesses, as well as assumptions regarding their ability to recover and life expectancy. This is contradicted by evidence.
For example, due to advances in treatments, people with rheumatic diseases are now often in good or very good health. To date, no evidence demonstrates that people with rheumatic diseases on or off immunosuppressant medication have worse outcomes after covid-19 infection. While early data has hinted that covid-19 mortality/severity are related to pre-existing conditions, there is little evidence to support a generalized exclusion of people with a variety of chronic illnesses and disability.
Evidence-based medicine is paramount to clinical care and decision-making and must not be disregarded during crises, such as the covid-19 pandemic. The University of Pittsburgh has published its triage approach, designed specifically to not discriminate and in which all patients are eligible, regardless of underlying comorbidities, disability or age. It emphasizes the physician’s duty to care regardless of disability or health status.
Health as a human right
When those who are considered vulnerable are in need of potentially life-saving measures, exclusion criteria in triage protocols serve the function of stopping to protect such individuals and may actually ensure or promote mortality. This is contrary to human rights laws.
The Constitution of the World Health Organization (WHO) endorsed the principle that the “enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition.” The United Nations Convention on the Rights of Persons with Disabilities also guarantees quality health on the basis of free and informed consent and prevents the discriminatory denial of healthcare or health services on the basis of disability. Regardless of advances made in human rights for persons with disabilities, accommodation, and accessibility, this vulnerable group is the first to be deemed disposable in the current crisis. The answer is—ICU Triage Protocols are harming people with disabilities.
Exclusion criteria erode the social contract and trust in health care and government systems—a trust that is vital during a pandemic and other disasters, but also beyond them. The pandemic is testing the very essence of who we are as a society. We call on government and hospital leaders to ensure their triage policies do not discriminate against people with disabilities and to consult with people with disabilities in the development and refinement of these policies. Making decisions that those assumed most likely to die are deemed not worthy of treatment is a dangerous precedent that will have dire consequences. These decisions are difficult—and may at times be necessary—but they must stand the litmus test of respecting human rights, dignity, and fairness.
Laurie Proulx is 2nd vice president of the Canadian Arthritis Patient Alliance, a patient run, volunteer-based organization whose activities are largely supported by independent grants from pharmaceutical companies.
Competing interests: LP has received speaking fees of less than $500 from a pharmaceutical company.
Lene Andersen is an author and disability rights advocate.
Competing interests: LA has received consulting fees of less than $2000 from pharmaceutical companies.
Emily Sirotich is a Board Member of the Canadian Arthritis Patient Alliance, a patient run, volunteer-based organization whose activities are largely supported by independent grants from pharmaceutical companies.