Oregon Hospitals Didn’t Have Shortages. So Why Were Disabled People Denied Care?

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Face masks hang from an IV pole at a hospital.

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Jenny Kane/AP

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In the hospital, a medical provider wrote Do Not Resuscitate and Do Not Intubate orders for the woman. Those are medical instructions to health care providers to withhold potentially painful interventions, like a ventilator or cardiopulmonary resuscitation (CPR) if a patient stops breathing or their heart stops. The woman was alone in the hospital and did not understand what the doctor and medical staff wanted her to agree to.

In addition, the hospital staff sent word to the woman’s group home: Fill out DNRs in advance for your other residents, in case one of them comes to the hospital.

People who worked with the disabled woman were angry that the doctor and the hospital seemed to be discounting the lives of people with disabilities.

Someone tracked down lawyers for help.

The lawyers work for Disability Rights Oregon (DRO), a federally funded legal group that protects the rights of people with disabilities. State Sen. Sara Gelser, who chairs the Senate Committee on Human Services, was notified, too.

NPR knows some details of the case in Pendleton based on interviews with state officials, lawyers and others in Oregon, as well as from documents obtained through a public records request.

Because of privacy laws, those we spoke to could talk only generally of the case and of the person involved. They couldn’t confirm the gender of the person. NPR knows it was a woman because of references in the state documents we obtained. Officials at DRO said they cannot confirm the place where the case happened. State documents showed it was in Pendleton, a town with one small, 25-bed hospital.

The report from Pendleton alarmed staff at DRO. «We investigated and substantiated it,» Jake Cornett, executive director of DRO, told NPR. A person with an intellectual disability was «being inappropriately influenced about life sustaining treatment.» And the physician in that case talked about the quote ‘low quality of life’ of a person with a disability.» Cornett made the same points, briefly, in testimony to the state legislature.

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«It would be one thing if these were isolated incidents,» says Jake Cornett of Disability Rights Oregon, but care was being denied to people across the state and that «should raise the alarm bell.»

Ramsey Cox

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Ramsey Cox

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When Emily Cooper at Disability Rights Oregon learned of the disabled woman who needed a ventilator but couldn’t get one, she threatened the hospital with a lawsuit.

Kelly Robbins

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Kelly Robbins

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Sarah McSweeney had a big personality and loved going shopping with friends. But at the hospital, doctors questioned why she wanted full care.

Joshua Peyton

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Joshua Peyton

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Oregon lawmaker Sara Gelser — here on the floor of the State Senate — introduced a bill to guarantee people with disabilities got equal care in hospitals during the pandemic.

Oregon State Sen. James Manning

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Oregon State Sen. James Manning

Oregon lawmaker Sara Gelser — here on the floor of the State Senate — introduced a bill to guarantee people with disabilities got equal care in hospitals during the pandemic.

Oregon State Sen. James Manning

In late June, Gelser wrote and co-sponsored an anti-discrimination bill: Senate Bill 1606. It barred doctors from forcing a Do Not Resuscitate or Do Not Intubate order on disabled or elderly patients, either as a condition of being admitted to the hospital or as a condition for treatment. It required doctors to honor a person’s medical orders for care.

It allowed a person with certain disabilities to have a family member or other support person with them during a hospital stay to help explain their medical choices.

That legislation passed the legislature and Oregon Gov. Kate Brown signed it into law on July 7.

Gelser was surprised that one section of the bill turned out to be controversial. Language that said doctors and health care providers could not discriminate on the basis of disability was stripped from the bill. Health officials worried that the language was too vague and would interfere with individual decision making.

The debate over denial of care to people with disabilities was a quiet one in Oregon. It was a conversation largely between advocates in the disability and aging communities, medical officials and state officials.

But it resulted in positive change.

• Officials in state health agencies played a role. The Oregon Association of Hospitals and Health Systems started trainings. 
• In September, the Oregon Health Authority withdrew the disputed state crisis standards of care. Those are the rules that doctors and hospitals can apply to ration care when it gets scarce. The drafters had failed to adequately reach out to «communities of color, tribal communities, or people with disabilities,» the authority said in a letter to Gelser, and as a result the guidelines «have the potential to perpetuate discrimination on the basis of race, age or disability.»

Leann Johnson, the health authority’s chief Equity and Inclusion officer, told NPR that the move reflected the agency’s plan, announced at the start of 2020, to end health care disparities by 2030.

• In October, Gelser objected that people with intellectual disabilities who lived in group homes and their direct service professionals had been left off the state’s priority list to get the COVID-19 vaccine. In November, the state amended its list and they were added. That made Oregon one of the first states—and likely the first, but there is no comprehensive comparison of every state’s plan—in the country to prioritize group home residents.

Frazzini reports that the man who, back in April, had difficulty getting a test for COVID-19, ran a high fever again in October and returned to the hospital ER. This time he got tested quickly and respectfully.

Frazzini gives the hospital credit for changing. «They really listened,» she says.

Frazzini was asked to join the hospital’s ethics committee—her first meeting is scheduled for January—to give the hospital perspective about disability.

And on December 8, Oregon announced new «crisis care principles» for health care providers, who were now facing a surge of new COVID-19 patients. Once again, there was fear of needing to ration scarce care. This time, the guidance from the Oregon Health Authority focused on the responsibility of doctors and hospitals to provide care in ways that did not discriminate against people with disabilities, African-Americans and other groups protected by civil rights law.

«Any approach to triaging care,» the new guidance said, cannot «exclude» someone on the basis of an underlying medical condition or a disability. Dana Hargunani, the Oregon Health Authority’s chief medical officer, told NPR that the agency is asking doctors and hospitals «to really consider the role that implicit bias has played.»

When the Oregon Health Authority announced the new equity principles, officials highlighted the advocacy of DRO and Gelser and thanked them for helping shape the new plan.

The changes in Oregon echoed the evolution of guidelines in other states. State and national disability groups had brought complaints to the Office for Civil Rights at the federal Department of Health and Human Services, the agency that enforces anti-discrimination laws in health care.

The Office for Civil Rights has announced its own settlements with several states to rewrite their crisis standards of care. Tennessee and Pennsylvania agreed to quit letting doctors use «quality of life» scores to determine who got scarce care. Connecticut agreed to let family into hospitals to help disabled people who had difficulty communicating. And Utah agreed to bar doctors from issuing blanket Do No Resuscitate orders.

There was one lingering question in all of these cases: Why was care rationed to people with disabilities at a time when Oregon’s hospitals were not overcrowded? When there were no shortages of treatment.

In early April, Governor Brown announced that Oregon was sending 140 ventilators to hard-hit New York. «We’re all in this together,» she said.

So, if there was no shortage, why were McSweeney and the woman in Pendleton denied ventilators?

Gelser — who has an adult son with an intellectual disability — thinks she has an answer.

There’s always a bias against people with disabilities in the health care system, she says. It was largely hidden.

The coronavirus made it visible — and then it made it worse.

«COVID has put a giant magnifying glass on inequities in health care delivery» for people with disabilities, Gelser says. «For the first time, we see in a more pressing and public way how deadly that can be.»

In the pandemic, doctors — worried about potential shortages for some — made decisions to deny care to others. «So before we even needed to triage,» Gelser says, «medical systems were deciding on reserving resources for non-disabled people that the system valued more, in case they ran out of resources later.»