As the Threat of Triage Grows, Disability Rights Advocacy Is Needed More Than Ever

This article was published by Not Dead Yet on April 6, 2020

Diane Coleman, Not Dead Yet.

On Friday, April 3rd, six leading disability rights attorneys and their respective organizations issued a statement entitled Applying HHS’s Guidance for States and Health Care Providers on Avoiding Disability-Based Discrimination in Treatment Rationing. The statement, which helps to interpret the federal bulletin issued a week earlier, was joined by over 90 organizations, including NDY.

One of the most critical parts of the statement focuses on the following language in the federal bulletin:

“[P]ersons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.”

The disability advocates’ statement explained this, in part, as follows:

• All persons should be eligible for, and qualified to receive, lifesaving care regardless of the presence of an underlying disability or co-morbid conditions, unless it is clear that the person will not survive in the immediate term or the treatment is contra-indicated.
• Treatment allocation decisions may not be made based on misguided assumptions that people with disabilities experience a lower quality of life . . . .
• Every patient must be treated as an individual, not a diagnosis. This means that the mere fact that a patient may have a diagnosis of, for example, intellectual disability, autism, cystic fibrosis, diabetes, spina bifida, spinal muscular atrophy, or schizophrenia cannot be a basis (in part or whole) for denying care or making that person a lower priority to receive treatment.
• Generalized assumptions must be avoided and doctors must instead focus on the most current and best available objective medical evidence available to determine an individual patient’s ability to respond to treatment. . . .
• . . . [V]alue judgments about the fact that a patient may require extensive support in activities of daily living, uses augmentative or alternative communication, uses a wheelchair, or experiences a psychiatric disability are irrelevant to decisions about whether such individuals should receive life-sustaining treatment.
• Protocols which equate survival with “health” or the absence of chronically debilitating symptoms, risk importing quality life criteria on the triage process.

Clearly, a carefully conducted individual assessment will protect many people with disabilities from being assigned a lower priority to receive treatment. Of course, as disability advocates know from decades of experience, individualized assessment, planning and services are easy words to say but much harder to get in practice. Our community must continue to press for this. It will save lives.

An equal or greater concern is that people whose “individual assessment” suggests they may have a lower likelihood of survival from COVID-19, or (under some triage approaches) a shorter predicted life expectancy for other reasons, would be given lower priority for treatment that could benefit them in terms of potential for survival.

One such “model” policy that is receiving a lot of attention is from the University of Pittsburgh. It calls for prioritizing individuals based on a combination of two primary factors. First, the “Sequential Organ Failure Assessment (SOFA) score (or an alternate, validated, objective measure of probability of survival to hospital discharge) is used to determine patients’ prognoses for hospital survival.” The second factor is “the presence of conditions in such an advanced state that life expectancy is very limited” {less than 1 year or less than 5 years), which is used to characterize patients’ longer-term prognosis. This does not inspire confidence in the policy’s objectivity. It provides for the kind of blatant discrimination that worries many of us (see, e.g., Alice Wong’s moving article in Vox.com).

As the potential for implementing triage policies increases, advocacy will be needed more than ever. For more information, one excellent resource is the DREDF COVID-19 page.