How Are Disabled People Affected When COVID-19 Health Care Rationing Happens? 

Source: NPR

Kimberly Conger, Sarah McSweeney’s nurse at her group home, shows a photo of McSweeney on her phone. She says McSweeney was outgoing and fun: “She absolutely adored going into malls and getting her makeup done and getting her hair done.”

On the morning of April 21, Sarah McSweeney woke up with a temperature of 103 degrees — and it kept rising. Staff at her group home worried that the woman with multiple disabilities — she couldn’t walk or speak words — had contracted COVID-19. They got her into her bright pink wheelchair and hurried to the hospital, just a block down the street from the group home in Oregon City, Ore.

That afternoon, Heidi Barnett got a phone call from the doctor in the emergency room.

He was puzzled, she says, by a one-page document that McSweeney’s caregivers brought with her. It was a legal document that explained what medical care this disabled woman — who couldn’t speak for herself — wanted.

“We had her at full code. So all treatment. Because she was young and vibrant and had a great life,” says Barnett. “And that was her wishes, that’s what we gathered from her. She wanted to be alive.”

Barnett works for The Arc Oregon, the agency that was McSweeney’s guardian. She had helped McSweeney fill out that document, called a POLST form, for a moment just like this.

It’s normal for a doctor to want to understand a patient’s wishes. However, Barnett, who kept daily notes on her conversations with medical workers about McSweeney, felt the doctor was challenging the order.

“They wanted it to be a DNR,” says Barnett.

A Do Not Resuscitate Order is a medical order to doctors not to treat a patient — like McSweeney — if she stops breathing or her heart stops.

That emergency room doctor would be the first at the hospital to raise a question that would shadow decisions about McSweeney’s care over nearly three weeks at the hospital: Why does a woman with significant and complex disabilities have a legal order that requires the hospital to take all measures to save her life?

McSweeney was 45 when she died on May 10. Her death would raise another question, one that people with disabilities and the elderly have worried about since the start of the coronavirus pandemic: Are they denied care when it gets scarce — like drugs or treatment, including ventilators — that might save their lives?

An NPR investigation looked into McSweeney’s death and about a dozen reports of discrimination in Oregon: Of doctors and hospitals denying equipment like ventilators; insisting that an elderly or disabled person sign a DNR — maybe when they couldn’t understand it and in the middle of a crisis — or even denying a COVID-19 test.

These decisions are made behind closed doors, NPR found, and as a result are little known and little understood. McSweeney’s case offers a rare look at how those decisions are made.


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