Bioethics Forum Essay
Disabusing the Disability Critique of the New York State Task Force Report on Ventilator Allocation
I am a member of the New York State Task Force on Life and the Law and helped write its 2015 guidelines on the allocation of ventilators during a public health emergency. The position outlined by the Task Force report has been a point of confusion in the media, and it was notably misrepresented by Ari Ne’eman, a disability activist, in an op-ed in The New York Times. The confusion is understandable given the legacy of discrimination against people with disabilities.
While I cannot speak for the New York State Task Force on Life and the Law, as an academic, I can share with colleagues the approach that I believe we outlined. As I understand our work, we sought to achieve a physiologically based methodology centering on the Sequential Organ Failure Assessment (SOFA) score to prioritize ventilator allocation once a public health emergency was upon us. Seeking refuge in the objectivity of the SOFA score, we sought to achieve a fair allocation of resources divorced from other socially-constructed determinants that could introduce bias and disadvantage those on the margins of society.
Once a declaration has been made of a crisis standards of care, as defined by the 2012 Institute of Medicine report, patients would be triaged into four color-coded categories based on their SOFA scores: Blue, Green, Red, and Yellow. Simply stated, those designated as Blue would not likely survive the acute infection despite maximal efforts. Green were those who were sick and did not need a ventilator. Red patients were most likely to survive if they received a ventilator. Yellow was an intermediate class between Red and Blue.
We didn’t recommend allocation decisions based on advanced age, as we believed that patients’ physiologic age was baked into SOFA scores, which track the functionality of several organ systems. The Task Force also intended to avoid discriminating against individuals with disabilities. When such discrimination takes place, a disability that has no bearing on outcome is used to deny care. This bias–often reflective of unrelated notions of social worth–can be subtle: a medical condition associated with a disability is used as rationale for rationing even though it would not affect outcome. An example of crypto-discrimination might be the heart conditions associated with Down syndrome even when these conditions had no bearing on survival. Discrimination based on disability is alleged to have occurred in Washington State. In response, the U.S. Department of Health and Human Services’ Office for Civil Rights in Action has issued a bulletin citing federal law that prohibits discrimination against people with disabilities.
Discrimination against people with disabilities creeps easily into medical decision-making. I made this point in Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness and in an op-ed in the same New York Times disability series that hosted the essay by Ne’eman. In these forums, I used a disability rights prism to advocate for individuals with disorders of consciousness. I do not believe, however, that the recommendations in the Task Force report discriminate against people with disabilities. The report seeks to disentangle disability from one’s ability to survive respiratory failure necessitating mechanical ventilation. I vividly recall a heated discussion during the Task Force deliberations in which we debated what would constitute the pool of ventilators that would be subject to allocation. Would someone who used a ventilator due to a chronic disability lose that ventilator to the collective?
The late Adrienne Asch, a disability scholar and bioethicist who was a member of the Task Force, helped us distinguish a ventilator in chronic use to maintain the health of someone with a preexisting lung condition from a ventilator which was used in response to an acute pandemic. With her typical eloquence and vigor, Asch argued that the chronic ventilator was part and parcel of that person. As such it was not subject to being commandeered in a crisis. It was theirs, not the collective’s. However, if that same person was admitted to the hospital and needed to make a claim on a more sophisticated ventilator because of a new severe illness, then they would be subject to the same assessment as everyone else. That was discriminating but not discriminatory. Sadly, Asch passed away in 2013, two years before the Task Force report was published.
The report isn’t a perfect methodology. It will be amended by circumstances and necessity. But I am glad we were able to do much hard work before the current crisis struck. New Yorkers and others who may draw upon it are fortunate that the report was not an ad hoc effort drawn up in the heat of the moment.
Joseph J. Fins, MD, is the E. William Davis, Jr., M.D. Professor of Medical Ethics and Professor of Medicine at Weill Cornell Medical College and Solomon Center Distinguished Scholar in Medicine, Bioethics and the Law at Yale Law School. He is a member of the Board of Directors and a Fellow of The Hastings Center.
For additional information and ethics resources on the coronavirus, please visit our COVID-19 Ethics Resources page:
https://www.thehastingscenter.org/ethics-resources-on-the-coronavirus/
(Image credit: By Francisco Goya, Public Domain)
Thank you for this explication of the New York State task force guidelines. I hope that it will be seen by Ari Ne’eman who appears to have misinterpreted one of the task force’s recommendations.
Very sensible explanation by Joe Fins of the distinction between discriminating and discriminatory. The same distinction was drawn by Nancy K. Rhoden in 1986 in “Treating Baby Doe: The Ethics of Uncertainty.” However, I’m not sure I understand Adrienne Asch’s distinction between someone with a preexisting lung condition on a ventilator and someone whose need for a ventilator arises during a pandemic. Is something like the starting vs. stopping treatment distinction behind her view that it’s permissible not to provide ventilation, but impermissible to remove someone from a ventilator?