Bioethics Forum Essay
New York State Task Force on Life and the Law Ventilator Allocation Guidelines: How Our Views on Disability Evolved
I am grateful for Ari Ne’eman’s reply to my recent Bioethics Forum essay on the New York State Task Force on Life and the Law’s Ventilator Allocation Guidelines and for his advocacy for people with disabilities. We fundamentally agree on the need for a just and equitable manner of allocating scarce resources in a public health emergency that does not discriminate against people with disabilities. This is a cause that both of us have tried to champion in our respective work.
I had argued that, in my opinion, the task force’s intent was to not view the personal ventilators of people using them chronically as being subject to a collective allocation. Ne’eman disagrees, citing a news report that reflected views of an earlier draft guideline from 2009. He worries that the citation of this article in the 2015 report as evidence to contrary. The 2009 news item was only cited as background. It was not endorsed.
So here is the good news: the views of the task force evolved over the years. As I noted in my Bioethics Forum essay, this growth was catalyzed by Adrienne’s Asch’s advocacy. The 2015 report acknowledges this evolution stating that, “There was considerable debate both before and after the publication of the draft guidelines on whether ventilator-dependent chronic care patients should be triaged by the clinical criteria at the chronic care facilities.”
Based on an expert working group the task force agreed “that distinctions should be maintained between acute and chronic care facilities once the Guidelines are implemented, permitting chronic care facilities to maintain their specific mission. Patients using ventilators in chronic care facilities are not subject to the clinical protocol.” There would be no commandeering of ventilators in the chronic care setting. As the report notes, “The unacceptable alternative would be to triage all stable, long-term ventilator-dependent patients, which may result in likely fatal extubations, and it would violate several principles of the ethical framework.”
The stance was one of equity: “If such patients require transfer to an acute care facility, then they are assessed by the same criteria as all other patients, and the possibility exists that these patients may fail to meet criteria for continued ventilator use.” In its comprehensive analysis on ventilator allocation, the task force considered “assessing all intubated patients, whether in acute or chronic care facilities, by the same set of criteria.” While we entertained that question, we concluded that this would “contradict commonly held societal beliefs, such as the need to protect vulnerable populations. . . . To triage patients in chronic care facilities once the Guidelines are implemented may theoretically maximize resources and result in more lives saved, but conflicts with the societal norms of defending vulnerable individuals and communities.” The task force stated in unequivocal terms that:
This strategy, however, makes victims of the disabled. This approach fails to follow the ethical principle of duty to care and could be construed as taking advantage of a very vulnerable population. More patients might survive, but they would be also different types of survivors, i.e., none of the survivors would be from the disabled community. The task force concluded that such a strategy relies heavily upon ethically unsound judgments based on third-party assessments of quality of life.
Now what of those patients who were admitted to the hospital? To answer this question, we were guided by the aforementioned normative concerns but also the utility of chronic care ventilators for the treatment of patients with respiratory failure in an acute care setting.
Ne’eman wrote that as a task force member I might be “better qualified” than he “to divine the task force’s true intent.” So I will take this invitation to elaborate. While I am neither authorized to speak for the task force nor generally a proponent of invoking juridical “original intent” (which can be complicated as there were many on the task force with differing views), I consider it to be important to flesh out what I believe was our thinking.
Beyond the normative statements, there were also practical clinical concerns of considerable import regarding the utility of chronic care ventilators for the treatment of patients with respiratory failure in an acute care setting. It is important to note that there are many types of ventilators with different functionalities. Addressing a clinical question, would ventilators in chronic use by patients be useful to them or others in the face of an acute illness? We concluded they “may offer little additional benefit.” In reviewing the text in the Report, I believe we could have elaborated more on this point. So I will say more here and offer the clarification that Ne’man requests. While mine is not an official statement, it is one view of “original intent.”
When a person who is chronically ventilator-dependent needs to go to the hospital with an acute illness and is in need of medical attention–beyond the care available in the community or the care that the chronic care facility already providing ventilator support could provide–they would be in a different place clinically and physiologically than their usual state of health. They had become sick and needed transfer to a hospital out of the community or their chronic care facility because they were developing respiratory failure. The chronic ventilator therapy that served them well when they were in their usual state of health–and again it is important to stress that disability is not a state of illness–that chronic ventilator could no longer meet their needs should their lungs begin to fail. They would need intensive care services and a more sophisticated ventilator, which could calibrate oxygen levels, provide pressure support, adjust tidal volumes, and manage modes of breathing more precisely than the one that they had chronically relied upon. It wasn’t so much that they would lose their ventilator but rather need something more.
At that juncture, they would be subject to an allocation scheme that was applied to all patients in need of such ventilators. To that end, the Task Force “reaffirmed that chronic care patients are only subject to the Guidelines when they arrive at an acute care facility. With their arrival at the hospital, they are treated like any other patient who requires a ventilator and need to meet certain criteria to be eligible for ventilator therapy.” Again, this allocation schema would pertain to sophisticated hospital ventilators because we concluded that ventilators in chronic use had little utility either for the general pool or the person who had been previously dependent upon them.
Ne’eman is right to voice his concerns about early drafts of the task force report. But they were only drafts, not final statements. Our views evolved, again spurred forward by Adrienne Asch’s perspective. On a personal note, this progress in our collective thinking tracked with my own work on disability rights and disorders of consciousness. As my understanding of civil and disability rights evolved, my position on what would constitute fairness changed as well. I am grateful for that growth.
In conclusion, I stand by what I wrote in Bioethics Forum. I would hope that in doing so I stand squarely with Ne’eman in his advocacy for people with disabilities. The journey the task force took in its thinking from early drafts to its final 2015 report was a salubrious one. It shows that people of good faith can evolve in their thinking about fairness, justness, and disability, especially when cajoled by passionate scholars like Adrienne Asch. I am very glad that her student, Ne’eman, is carrying on his mentor’s tradition of engaged scholarship. And I am thankful that I had the chance to learn from her as well.
Joseph J. Fins, MD, is the E. William Davis, Jr., M.D. Professor of Medical Ethics and Professor of Medicine and Chief of the Division of Medical Ethics 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.