Investigative report: Disabled, elderly at ‘back of the line’ for COVID-19 care in at least 25 states
UNITED STATES, April 9, 2020 (LifeSiteNews) — Coronavirus patients with disabilities or over a certain age could be placed at “the back of the line for life-saving treatment” in states across America in the event of a shortage of medical supplies such as ventilators, according to an investigative report by The Center for Public Integrity.
The report analyzed the emergency rationing or “crisis standards of care” policies of 30 states and concluded that 25 of them “had provisions of the sort advocates fear will send people with disabilities to the back of the line for life-saving treatment.” The Center for Public Integrity says that the other 20 states had either “not established rationing policies or did not release them.”
Among the report’s findings are (emphasis added):
Policies and guidelines in 14 states, including Alabama’s, put patients with specific criteria or diagnoses at the back of the ventilator line in a way disability advocates decry as discriminatory. Alabama, Louisiana, Pennsylvania, Texas and Utah direct hospitals to take dementia into account. In Washington, the state's guidelines say doctors should consider “baseline functional status” when determining whether to move patients to end-of-life care, including “loss of reserves in energy, physical ability, cognition and general health.”
Policies and guidelines in five states—Alaska, Florida, Oklahoma, Vermont and Wisconsin—specify that patients with cystic fibrosis, a genetic lung disease that affects about 30,000 people in the U.S., should not be considered for a ventilator.
Policies in 13 states direct hospitals to evaluate whether patients need “assistance with activities of daily living” or would need more resources than other patients, such as home oxygen or dialysis.
Policies in six states—Connecticut, Florida, Indiana, Kansas, Minnesota and New York—say hospitals should consider taking ventilators away from patients who rely on them in daily life if others need them more, a practice advocates say would discourage people with disabilities from even seeking treatment for COVID-19.
Policies in 16 states took into account how many more years patients are likely to live, beyond their immediate illnesses. Advocates say that could lead to all sorts of discrimination against the disabled, many of whom already have lived much longer than their initial prognoses.
The report also argues that “states need to have policies in place now, before coronavirus cases peak, and should not cloak them in secrecy” because if doctors are left without clear guidance to make decisions on who lives and who dies in a crisis situation, then there is a risk that they will “lean on personal biases and stereotypes, even unwittingly.”
Yesterday the Office for Civil Rights (OCR) at the U.S Department of Health and Human Services (HHS) announced that it had reached an early case resolution with the State of Alabama. Disability advocates had filed a complaint against Alabama alleging that the Yellowhammer State’s plans in the event of an emergency “allowed for denying ventilator services to individuals based on the presence of intellectual disabilities, including ‘profound mental retardation’ and ‘moderate to severe dementia’.” The OCR statement also notes that “the 2010 Criteria appeared to reference age as a potential category for exclusion.”
The problematic language appeared in a 2010 document called “Criteria for Mechanical Ventilator Triage Following Proclamation of Mass-Casualty Respiratory Emergency” (2010 Criteria) which until recently appeared on the Alabama Department of Public Health's website.
The OCR announcement says that Alabama “has agreed to remove all links to the 2010 Criteria from its websites and to comply with applicable civil rights law” and that future guidelines will not “include similar provisions singling out certain disabilities for unfavorable treatment or use categorical age cutoffs; and that it will also not interpret the current Guidelines in such a manner.”
Alabama issued new guidelines in February, but The Center for Public Integrity says that they are “vague” and that they offer “no instruction on how to decide between patients if ventilators need to be rationed.”
One Alabama mother of a 37-year-old man with Down Syndrome told The Center for Public Integrity that she is still concerned for her son.
“I’m scared for Matthew,” Susan Ellis said. “I was outraged and still am that any decision-maker or policy-maker in our state would think so little of people with intellectual disabilities that they would actually say an IQ score determines whether you live or die.”
‘I’m fearful of how they would treat me and my differences’
According to the report, disability advocates have also filed formal complaints with the federal government about the policies of Kansas, Tennessee, and Washington.
The OCR says that decisions concerning whether an individual is a candidate for treatment should be based on “an individualized assessment of the patient and his or her circumstances, based on the best available objective medical evidence.”
“Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism,” said OCR Director Roger Severino, in a bulletin published March 28. “HHS is committed to leaving no one behind during an emergency, and helping health care providers meet that goal.”
“Persons with disabilities, with limited English skills, and older persons should not be put at the end of the line for health care during emergencies.”
The report says that disability advocates want state policies to be based on “how likely each patient is to survive the disease being treated.”
Shira Wakschlag, associate general counsel at The Arc, one of the disability advocacy groups that filed the federal complaints against Alabama and other states, has said that medics need to look at each person “as a full individual and not using a bunch of external factors or value judgments about what their life is like.”
“You have to look at the individual and not just work off stereotypes about a broad diagnosis,” she continued.
Responding to Washington state’s guidelines saying that doctors should consider “baseline functional status” when determining whether to move patients to end-of-life care, Wakschlag said: “That’s not, ‘Is this person going to respond well to treatment?’...That’s a judgment about who is more valuable than others that doesn’t really have a place in a medical decision-making process.”
A disability-rights activist in Takoma, Washington, told The Center for Public Integrity that her state’s policy reminded her of eugenics.
Ivanova Smith, who has an intellectual disability, signed the complaint about Washington’s policy.
“I would hope that they would try to do everything they could to keep me alive, but it looks like that’s not guaranteed, so it’s kind of scary for me,” she said. “I’m fearful of how they would treat me and my differences.”
A group of U.S. lawyers recently warned that rationing health care based on disability or age during the coronavirus outbreak violates federal civil rights law.
“Federal law requires that decisions regarding the critical care of patients during the current crisis not discriminate on the basis of disability or age,” lawyers representing the Freedom of Conscience Defense Fund and the Thomas More Society wrote in a March 23 memorandum. “In this respect, anticipated longevity or quality of life are inappropriate issues for consideration.”
“Decisions must be made solely on clinical factors as to which patients have the greatest need and the best prospect of a good medical outcome. Therefore, disability and age should not be used as categorical exclusions in making these critical decisions,” the lawyers stated.