I first wrote on March 17th about my fear that the non-invasive ventilator I use everyday might be taken from me if I sought hospital care during this pandemic. The New York “Ventilator Allocation Guidelines”, developed in 2015 to address shortages in a pandemic, specifically state at page 42:
In its consideration to protect vulnerable populations, i.e., ventilator-dependent chronic care patients, the Task Force determined that these individuals are subject to the clinical ventilator allocation protocol only if they arrive at an acute care facility for treatment.
Although a new plan specific to COVID-19 was reportedly being discussed by NY state officials and healthcare providers, I didn’t hear anything more specific, nor anything reassuring related to the concerns of New Yorkers living in the community with ventilators.
About a week after my blog, I was contacted by Disability Rights New York, the NY protection and advocacy organization, asking if I would be one of the complainants in a letter directed to Governor Cuomo about discrimination in the Guidelines. I’m deeply grateful that DRNY undertook this effort and, of course, I agreed to be a complainant. The DRNY letter to Governor Cuomo summarizes the concerns about the 2015 Guidelines as follows:
The specific discriminatory impact of the Guideline is two-fold: eligibility assessments for treatment may inadvertently screen out a disproportionate number of individuals with disabilities, and chronic ventilator users may not seek necessary acute care for fear that they will be assessed ineligible for continued ventilator use and have their personal ventilators re- allocated to “healthier” individuals. [To read the full letter, go here.]
Having received no response to this letter, on April 7, DRNY filed a formal federal complaint described in a press release:
Albany, NY April 7, 2020: Disability Rights New York (DRNY) has filed a complaint with the United States Department of Health and Human Services (HHS) against the New York State Department of Health (DOH), because there are no policies from DOH to prevent the discriminatory rationing of health care to people with disabilities.
DRNY is requesting that HHS require DOH to immediately take the necessary steps to ensure that New Yorkers with disabilities have equal access to life saving health care.
The 2015 Ventilator Allocation Guidelines can be used to prevent people with disabilities from obtaining ventilators simply because they have underlying conditions that may intensify symptoms and slow recovery. Hospitals and other medical facilities need clear guidance that such actions would be discriminatory, illegal and actionable.
The DRNY OCR complaint directly challenges the alleged objectivity of measures being promoted as a nondiscriminatory approach to allocating scarce resources. Here are some key excerpts from the complaint:
- [The NY] Task Force states that the Sequential Organ Failure Assessment (“SOFA”) system should be used. A SOFA score, which is used to track a person’s status during an intensive care stay adds points based on clinical measures of function in six key organs and systems: lungs, liver, brain, kidneys, blood clotting, and blood pressure. . . .
- [I]ndividuals with preexisting conditions are by default going to receive higher (worse) SOFA scores than individuals without disabilities, meaning these individuals with disabilities will be less likely to receive life-saving care. . . .
- Individuals with disabilities may live day-to-day without any complications, but with a condition that presents abnormalities in one or more of the six key organs and systems measured using SOFA. . . .
- These individuals would be disadvantaged in a triage situation prior to considering any symptoms that result directly from COVID-19. . . .
- In its effort to treat everyone equally, the Task Force seemingly accepts the inevitable deaths of chronic ventilator users…
- NY DOH is discriminatorily preventing chronic ventilator users from seeking acute healthcare services in violation of federal law. . . .
To read the full complaint, which is not limited to discrimination based on chronic use of a ventilator, go here.
Despite the serious discrimination in the NY 2015 Guidelines, it’s important to recognize that many states have guidelines or “crisis standards of care” that include even more discriminatory provisions that have been and are being challenged. As we pointed out in NDY’s April 6 blog, many states have adopted so-called “model” guidelines from the University of Pittsburgh which call for prioritizing individuals based on a combination of two primary factors.
First, as in the NY Guidelines, the person’s Sequential Organ Failure Assessment (SOFA) score is used to determine prognoses for hospital survival.
The second “model” factor used in many states (though not NY) is to characterize a person’s longer-term prognosis: “the presence of conditions in such an advanced state that life expectancy is very limited” (less than 1 year or less than 5 years). Needless to say, the disability community has long-standing critiques of medical predictions of our mortality. (My husband and I have, between the two of us, survived more than 100 years beyond the expiration dates doctors gave our parents when we were children.)
In addition to challenges like DRNY’s OCR complaint, individual disability rights advocates have also raised important questions about the “SOFA score” and other criteria that don’t specifically mention “disability” but clearly discriminate against us in life threatening ways. Two examples that are well worth reading are Ari Ne’eman’s Hastings Center article, When It Comes To Rationing, Disability Rights Law Prohibits More Than Prejudice, and Andrew Pulrang’s Forbes article, The Disability Community Fights Deadly Discrimination Amid The COVID-19 Pandemic.
Obviously, the so-called “objective” SOFA score and life-years approaches are dangerous to many people with disabilities of all ages. COVID-19 has revealed society’s blatant willingness to throw away the lives of older, ill and disabled people.
The “crisis standards of care” that are confronting us are not only relevant to pandemics but to all kinds of disasters and deserve our continued advocacy going forward. By using them to decide who gets life-sustaining treatment, healthcare providers risk turning a tool for predicting mortality into nothing more than a self-fulfilling prophecy.
I heard from an Ohio physician in response to this article:
One thing people forget about SOFA scores, APACHE scores etc is that they are designed for use in study protocols using above a certain number of patients. For example the APACHE system is only accurate in predicting mortality when applied to a cohort of more than 100 patients in which it is correct only 85% of the time. The number of cases over predicted are balanced by the patients under predicted. When applied to a single patient (the Z statistic) it’s accuracy falls to 50-70%. A coin toss is accurate 50% of the time. These scores are reasonable for looking at large groups of patients but were never designed to be used as a prospective triage tool. Even physicians are very poor at predicting prognosis at an individual level. They also basically give patients the “odds” of survival. For an individual, however, it is really a binary outcome ie. they live or die. Any decisions made about a given patient to provide or withhold care need to be made transparently with a given patient and family or as you state the patient’s death will be a self fulfilling prophecy.
Terence Kilroy, MD, FCCP