When COVID-19 struck New York last spring, many people feared they would land in the hospital and get put on a ventilator. But Diane Coleman was worried if she went to the hospital, the ventilator she relies on to breathe would get taken away.
Her trepidation stemmed from guidance released by the state Health Department in 2015 on how ventilators should be allocated during a pandemic. The document, composed by a panel of medical ethicists, lawyers, and health care professionals that included the state health commissioner, provides a range of factors that should be considered when allocating ventilators, including a patient’s likelihood of survival.
One section said any patient who arrived at a hospital with their own ventilator could have it taken away for another person in desperate need. “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,” read the advisory, which was crafted in preparation for flu pandemics.
Coleman is president and CEO of the disability rights organization Not Dead Yet, which is among the plaintiffs challenging the guidance in a federal class-action lawsuit against Governor Andrew Cuomo, State Health Commissioner Dr. Howard Zucker and the New York State Department of Health. The complaint, filed in October, says the guidelines discriminate against people with disabilities and discouraged some ventilator users from seeking acute care during the pandemic “for fear of being forcibly extubated, which would lead to their deaths.”
Coleman has a rare form of muscular dystrophy called Bethlem myopathy and says her diaphragm is too weak for her to breathe independently. She uses a ventilator 22 or 23 hours a day.
“Luckily, I did not need to go” to the hospital, said Coleman, who lives in Rochester. “But I was very much worried about it because the guidelines seemed very clear that if I did go to a hospital, either for any other type of medical issue or COVID, then I would have the risk that my ventilator could be reallocated.”
The state has sought to dismiss the case, arguing that the guidance was non-binding and wasn’t adopted as an official policy before or during the COVID-19 response. The state also emphasized that the New York State Task Force on Life and the Law recommended the guidelines, not the Department of Health. The DOH, however, is listed on the title page of the document, and Health Commissioner Zucker wrote the introduction.
When asked if any chronic ventilator user’s device was removed during the pandemic, the DOH didn’t respond. The case’s plaintiffs did not put forward any allegations that health care providers applied the guidance during COVID-19 to the detriment of a chronic user.
“We’re not saying anyone’s ventilator was taken, but if it comes to that, it’s too late,” said Britney Wilson, an attorney for the plaintiffs. “Emergency plans like this are by themselves discriminatory.”
Medical decisions are ultimately made at the hospital level, not by government officials, said Arthur Caplan, a professor of bioethics at the NYU School of Medicine. But he added that state-issued guidance does play a role in limiting liability for medical providers.
Alabama rescinded 2010 guidance that called for hospitals to withhold ventilators from patients with “profound mental retardation” or “moderate to severe dementia.”
“If you make a particular medical decision, you can seek relief from legal consequences if you say, ‘Well, look, there was an advisory, and it said that in a pinch, there may be people on ventilators who I remove, or there may be people who I don’t choose to give a ventilator to for various medical reasons,’” Caplan said. He added that more discussion is needed among medical professionals about how to avoid discriminating against people with disabilities when allocating life-saving resources during a crisis. There can be a fine line between discrimination and a valid medical decision, he said.
“Just saying that a person has Down syndrome and we’re not going to treat them or we’re going to take their ventilator away, that’s bias and bigotry,” Caplan said. But he said if a patient comes into a hospital on a ventilator and has medical conditions that give them a very low chance of survival or their condition worsens to the point of hospice, it might be legitimate to give their ventilator to someone else.
Other states have faced blowback for their rules around emergency medical resource allocation–many of which were also written years ago. During the first wave of the pandemic, the federal Department of Health and Human Services’ Office for Civil Rights received complaints from disability rights groups in Alabama, Kansas, Pennsylvania, Tennessee, Utah and Washington. Some were successful. Alabama rescinded 2010 guidance that called for hospitals to withhold ventilators from patients with “profound mental retardation” or “moderate to severe dementia.”
Disability Rights New York, which is representing the plaintiffs in the case against New York, also filed a complaint with HHS’s Office for Civil Rights and wrote a letter to Governor Cuomo to address their concerns last year. The organization said it filed a lawsuit because the state did not deliver a substantive response.
The judge in the case has not yet ruled on the state’s January motion to dismiss the lawsuit, but the case has nonetheless proceeded to the discovery stage in which each side shares evidence.
While the COVID-19 pandemic is ebbing, Jessica Barlow, an attorney with Disability Rights New York, said, “Our clients cannot afford to wait until we’re at the height of a pandemic again and be forced to make life and death decisions to challenge this.”