Civil rights officials at the Department of Health and Human Services issued a series of actions to protect people with disabilities from health care discrimination by medical providers during the pandemic.
The actions, by the Office of Civil Rights, or OCR, at the Department of Health and Human Services, specifically address discrimination related to the denial of treatment for people with disabilities who have COVID-19 or the symptoms of COVID-19. They include:
- The start of a process to write regulations that explicitly prohibit medical workers from denying care to people with disabilities based on subjective decisions about the quality of their life or by issuing a Do Not Resuscitate order without the patient's consent or against their stated preference.
- A revision to the guidelines of four health care systems, in North Carolina, North Texas, Southwest Texas and the Indian Health System, to assure that people with disabilities and older people are not passed over for scarce care, like drug treatments and ventilators.
These problems were the subject of a series of NPR stories about how people with disabilities were denied ventilators and other pandemic care in Oregon. NPR's stories were cited in OCR's proposal.
"We said during COVID-19, our civil rights are not suspended," HHS OCR director Roger Severino told NPR. "People will not be subject to age or disability discrimination when the going gets tough."
Sarah McSweeney, whose death was the subject of one of NPR's stories on health care rationing, was a 45-year-old woman with multiple disabilities. She died at an Oregon hospital in May after doctors questioned her quality of life and pressured her guardian and others who cared for her to sign a Do Not Resuscitate order to allow doctors to withdraw care.
The new OCR action makes clear that doctors cannot issue a blanket DNR and cannot substitute their subjective beliefs about the quality of a disabled person's life over the person's own wishes.
Severino says the actions are intended to make clear "that discrimination against persons with disabilities will be absolutely forbidden and stereotypes about their usefulness should never be part of a discussion when we allocate care."
If the OCR action — which takes on a range of issues of discrimination — becomes formalized, it would become a significant expansion of disability civil rights law.
Severino's office wanted to make a formal rule but could not get the action through all of the steps of the approval process before the end of the Trump administration. Instead, it was issued as a "request for information", which is usually an appeal to stakeholders for information to help make a rule.
But a final rule exists in draft form, according to a source at HHS, with hopes that new Biden Administration officials will pick it up.
Alison Barkoff, of the Center for Public Representation, a disability civil rights group, said the OCR actions reflect parts of the disability agenda that President-elect Joe Biden had promised in his campaign.
"This is a great signal and we're really pleased," says Barkoff, who helped write more than a dozen complaints to OCR about treatment of people with disabilities during the pandemic
In addition, OCR announced four settlements over what are called "state crisis standards of care." These are guidelines by state governments to health care providers about how they can determine who gets medical care if it gets scarce. The rules are guidelines for events like natural disasters, terrorism or pandemics.
At the start of the coronavirus pandemic, disability groups across the country filed complaints with OCR, claiming their state's guidelines allowed doctors and hospitals to deny care to people with disabilities and the elderly. OCR had already announced several previous settlements with states, including ones with Alabama, Pennsylvania, Tennessee and Utah over policies to triage care including decisions about who gets a ventilator.
Some state standards, for example, allowed scarce care to be denied to people with moderate dementia, or who used portable ventilators, even though many people who use ventilators to help them breathe still hold jobs and live full lives.
The final four agreements — including in Texas where hospital staff say they are facing shortages in the latest spike of the coronavirus — include language to guarantee doctors will not pressure patients to sign Do Not Resuscitate orders and not exclude people from treatment based on their disability alone.
The steps taken by OCR to stop medical discrimination reflect the findings of a series of papers on bioethics and disability, issued by the National Council on Disability, an independent federal agency that makes recommendations to Congress and the White House on disability policy. Those reports alleged widespread discrimination in medical settings against people with disabilities — from who gets organ transplants to how bias that disabled people can't have a good quality of life is used to deny medical treatment.
"Disability discrimination in health care is among the most insidious — with life and death consequences — and it's hard to root out," Neil Romano, chairman of the National Council on Disability told NPR.
The action by OCR, he says, "sends an unequivocally clear message that we will not accept health care that relegates people with disabilities to last in line or 'lost cause.'"