As hospitals around the country brace for an expected surge of patients infected with the COVID-19 coronavirus, fears have been raised that health care providers will begin rationing treatment, with lethal consequences for people with disabilities.
Reacting to protocols to ration care adopted by Washington State and Alabama, advocacy groups filed strongly worded complaints. In response, the federal government has issued a bulletin warning health care facilities not to discriminate against people with disabilities when making treatment decisions during the COVID-19 health care emergency.
Washington State, the first state slammed by the pandemic, released a plan March 16 to guide hospitals on treatment decisions if, as expected, they run short of ventilators and other life-saving medical equipment. The plan suggests that when allocating resources, hospitals should rely on a “utilitarian framework” and consider, for example, a patient’s "baseline functional status” and “loss of reserves in energy, physical ability, cognition and general health.”
In a March 20 letter to the U.S. Department of Health and Human Services (HHS), the Consortium for Citizens with Disabilities wrote, “The lives of people with disabilities are equally valuable to those without disabilities, and healthcare decisions based on devaluing the lives of people with disabilities are discriminatory.” .
Three advocacy groups -- Disability Rights Washington (DRW), the Arc of the United States, and Self Advocates in Leadership -- filed a federal complaint with HHS’ Office of Civil Rights (OCR) on March 23. They alleged the Washington State plan was created without input from the disability rights community and violates the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and the Affordable Care Act’s disability discrimination provisions.
The groups argued that the language in the plan, particularly without any guidance on federal anti-discrimination laws, will be interpreted to permit medical professionals to deny services to people solely based on their disabilities—without any individualized assessment as to how these patients, many of whom are already among society’s most vulnerable to COVID-19, will survive treatments for the coronavirus.
Even if disability discrimination is not overt, the advocacy groups worried that medical professionals will ration services based on outdated stereotypes of disabilities or other factors, such as a person’s need for subsequent accommodations or long-term survival prospects, which have no bearing on a patient’s immediate ability to survive the pandemic and legally cannot be considered.
“We will not sit by as members of our community are left for dead,” DRW Director of Advocacy David R. Carlson said in a news release. “We stand up for those with preexisting disabilities and those with newly acquired disabilities who are impacted by COVID-19. We implore OCR to rein in and provide urgently needed guidance to the health care professionals who are prepared to relegate members of our community to die.”
Meanwhile, the Alabama Disabilities Advocacy Program filed a separate complaint to OCR on March 24. Alabama’s emergency plan, if it goes into effect, explicitly orders hospitals to “not offer mechanical ventilator support for patients” with “severe or profound mental retardation,” “moderate to severe dementia,” and “severe traumatic brain injury.”
Both complaints urged the federal government to “act swiftly” to investigate and issue nationwide anti-discrimination protocols.
The concerns were evidently heard. On March 28 the OCR issued its bulletin reminding health care providers to "keep in mind their obligations under laws and regulations that prohibit discrimination" against those with disabilities, and OCR director Roger Severino announced his office was opening an investigation to ensure state rationing plans are fully compliant with civil rights law.
“Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism,” Severino said in the bulletin. “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.” Severino added.
For more information on disability discrimination in medical decision-making, click here to read DRW’s 2012 report, “Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights,” and click here to read the NCD’s recent “Bioethics and Disability Report Series.”