Bioethics Forum Essay

Do New York State’s Ventilator Allocation Guidelines Place Chronic Ventilator Users at Risk? Clarification Needed

In  his recent essay, Joseph Fins  argues that I “notably misrepresented” the position of the New York State Task Force on Life and the Law  as one of several examples of state allocation criteria that raise disability discrimination concerns. He was referring to my New York Times op-ed. When a scholar with Dr. Fins’s history of productively engaging with disability rights views raises concerns, they deserve a well thought out response. I have a great deal of respect for his work on brain injury and appreciate his continued engagement with the disability rights community.

The New York Task Force guidelines have much to recommend them from a disability rights standpoint, most notably their decision not to consider long-term survival, quality of life assessments, and categorical exclusions on the basis of diagnosis. Nonetheless, I believe disability rights concerns regarding the Task Force’s recommendations on chronic ventilator users are well-founded. If the Task Force’s intentions for this population were as narrow as Dr. Fins writes,  they should revise their language to offer clarity on that point as quickly as possible.

Many people with disabilities are concerned that the New York Task Force recommendations do not permit them to bring their own vents with them into the hospital – and potentially subject personal ventilators to re-allocation if patients do enter the hospital with them. Recognizing these concerns, Disability Rights New York, the state’s protection and advocacy agency, recently sent a letter to the Governor expressing the concerns of many New York State ventilator users that they may risk losing their ventilator if they enter an acute care setting.

Advocates in Kansas have also filed a legal complaint with the Department of Health and Human Services Office of Civil Rights regarding the  use by those states of criteria modeled after the New York Task Force’s, stating that “regular users of ventilators are afraid to seek medical help when they become ill because ventilator rationing may result in their every-day ventilators being re-allocated to other patients who are deemed a higher priority.”

Dr. Fins reads the Task Force’s recommendations as indicating that chronic ventilator users are only at risk if they must “make a claim on a more sophisticated ventilator,” rather than if they wish to continue  using their own. This is a distinction that appears nowhere in the Task Force’s 272-page guidelines.

In fact, the language used by the Task Force to discuss chronic ventilator users suggests the opposite, referring to concern that such individuals may be deterred “from going to an acute care facility for fear of losing access to their ventilator” and arguing that “if chronic care patients were permitted to keep their ventilators rather than be triaged, the policy could be viewed as favoring this group over the general public.” (Italics added for emphasis.)

After the Task Force released its first draft, the New York Times reported in 2009 that state health officials had presented to medical professionals a hypothetical based on the draft guidelines involving a 32-year-old man with cystic fibrosis entering the hospital with appendicitis in the midst of a flu pandemic, who “brought with him the mechanical ventilator that helps him breathe.” According to the Times, “the guidelines call for the machine that keeps him alive to be given to someone else.” Far from refuting this interpretation, the Task Force cited the article in its final report. If this is a misinterpretation of the Task Force’s recommendations, it is one that the Task Force has allowed to stand unchallenged for the last decade and that media reports suggest may have been similarly misinterpreted by the state.

As a Task Force member, Dr. Fins is far better qualified than I to divine the Task Force’s true intent in making their recommendation, but the plain language of its words implies something very different. If this recommendation is only designed to subject people with disabilities to triage for access to more sophisticated a new ventilator not already in use by someone with a disability, then the guidelines should be revised to make this clear as quickly as possible. There is no disagreement between the Task Force and disability rights activists on this point. No one is proposing that people with disabilities be permitted to “jump the line” and force the denial of care to the nondisabled.

This lack of clarity may cost lives if providers take the same commonsense reading of the language that many others have. To protect against this, the Task Force should act now to indicate explicitly that people with disabilities should be permitted to retain access to their existing ventilators, even if they enter an acute care environment that would typically preclude them from bringing in their own medical equipment.

As Dr. Fins notes, the late great Adrienne Asch–whom I had the good fortune to learn from as a mentor and friend–argued passionately that a “chronic ventilator was part and parcel of that person.” Maintaining that principle, people with disabilities who require it should be permitted to bring their existing ventilators with them into the hospital in the same sense that they would be permitted to bring in their own lungs. This would mitigate a major point of concern for people with disabilities at a difficult time. If Dr. Fins can facilitate an official clarification of this point by the Task Force, I know many in the disability community would be deeply grateful.

Ari Ne’eman is a Visiting Scholar at the Lurie Institute for Disability Policy at Brandeis University and a Senior Research Associate at the Harvard Law School Project on Disability. He previously served as President of the Autistic Self Advocacy Network and as a Member of the National Council on Disability. Twitter: @aneeman. 

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