Consider This from NPR - When Hospitals Decide Who Deserves Treatment: NPR Investigates 'Denial Of Care'

Episode Date: December 16, 2020

In an Oregon hospital, a disabled woman fought for her life as her friends and advocates pleaded for proper care. Her case raises the question: Are disabled lives equally valued during a pandemic?NPR investigations correspondent Joseph Shapiro reports on what happened to Sarah McSweeney.In participating regions, you'll also hear a local news segment that will help you make sense of what's going on in your community.Email us at [e-mail] more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy

One morning in April, Sarah McSweeney woke up with a fever, a bad one. I got a phone call on the 21st, the morning of the 21st, that Sarah had woke up with a fever of 103. Kimberly Conger is the nurse manager at a group home in Oregon City, Oregon, where Sarah lived at the time. Sarah lived in a group home because she had a number of disabilities, including cerebral palsy. She couldn't speak or walk on her own, and that morning she woke up with a fever. Staff worried it might be a sign of COVID-19. And they gave her some Tylenol to bring it down, and it continued to climb. So we took her over to the emergency room. It was a block away, not a hard trip in Sarah's bright pink wheelchair. She got checked in and doctors started some tests.

But later that afternoon, there was a problem, and it had to do with a one-page document that arrived with Sarah at the hospital that day. It was a legal document that explained what kind of medical care Sarah wanted because she couldn't speak herself. Sarah had help preparing the document from an agency called the Arc of Oregon. That was her guardian. We had her at full code, so all treatment. That's Heidi Barnett with the Arc of Oregon. Because she was young and vibrant and had a great life. This document, which is pretty typical in the state for people like Sarah to have,

said that in any life-threatening situation, she wanted full treatment. And that was her wishes. She wanted to be alive. But the problem that day at the hospital wasn't with the document itself. It was that an ER doctor wanted to change it. They wanted it to be a DNR.

A DNR. A DNR. A doctor who called Heidi Barnett that day in April said he thought Sarah McSweeney should be placed under a do-not-resuscitate order. Barnett said no, that's not what Sarah wanted. She figured that was the end of it. But it wasn't. What happened next is the subject of a report

by NPR's investigations unit, which spent months digging into Sarah McSweeney's story. It's a story that raises big questions, especially in the middle of a global pandemic, about who decides whether you get a bed, a prescription drug, or access to medical equipment like a ventilator. Decisions like that can be a matter of life or death, and they're decisions that are sometimes taken away from the most vulnerable Americans. It's Consider This from NPR. I'm Adi Cornish. It's Wednesday, December 16th.

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Listen now to the ThruLine podcast from NPR. there is a long documented history of treating disabled lives with less value. Sarah McSweeney's story reveals exactly how that can happen. Not all at once, with one doctor making a crucial all-or-nothing decision, but slowly, incrementally, in a systemic way that makes it hard for people living with disabilities and their advocates to fight back. In Sarah McSweeney's case, she lost that fight. She died in that Oregon hospital this past spring at the age of 45. For the past few months, NPR's investigative correspondent Joseph Shapiro has been looking into how that happened, and he picks up the story from here. When someone took a picture of Sarah McSweeney,

she'd look right at the camera and she'd smile or laugh. Like the photograph where she's sticking out her tongue. Her dark hair is dyed a bright red, a color that clashed with her neon pink wheelchair. Sarah enjoyed lots of stuff in her life. That's Conger, the nurse for Community Access Services. That's the social service agency that ran Sarah's group home. She absolutely adored going into malls and getting her makeup done and getting her hair done and doing, you know, the typical girly stuff that girls like to do and get pedicures and manicures. She really enjoyed

going out to country concerts. Her staff would take her to the country bars to watch people country dance. Most people looked at Sarah McSweeney and saw her disabilities. She couldn't walk. She couldn't speak words. She had congenital quadriplegia. She had osteoporosis. She had cerebral palsy. She had a gastrostomy tube. That's the feeding tube to Sarah's stomach.

She could eat nothing by mouth. She had some scoliosis. Could she operate a power wheelchair? She could not. So how did she get around? She was dependent on staff to push her. To push her, okay. And how did she communicate? She communicated with eye movements, facial expressions, noises, certain noises she would give you. We're telling you the story of this woman in Oregon because it tells a bigger story. One that we've seen repeated in our reporting and our public records requests. We found multiple cases in Oregon and around the country where people with disabilities and older people were denied treatment. NPR reviewed hospital medical records

that raised questions about the care Sarah McSweeney got and didn't get. In the ER, the doctor diagnosed a urinary tract infection. X-rays would show some fluid in her lungs, a small pneumonia. To be careful, McSweeney was moved to the ICU. Later tests would show no COVID. A few days later, another doctor called. He said it was urgent. Kimberly Conger, the group home nurse, hurried to the hospital.

He showed her the X-ray of Sarah's lung. called. He said it was urgent. Kimberly Conger, the group home nurse, hurried to the hospital. He showed her the x-ray of Sarah's lung. The doctor said it was blocked with fluid and that Sarah needed to be on a ventilator. Conger agreed because that's standard treatment, what a hospital would do for anyone. And we discussed the possibility of her being intubated and letting that lung rest and, you know, giving her time to heal and let the antibiotics do their magic. But then the doctor pushed to limit care for Sarah. And he said intubating her was a matter of risk versus quality of life. And I kind of looked at him and I was like, but she has quality of life. And he looked at me and he goes, oh, she can walk and talk.

And yeah, he did this. You just lifted your fingers up and did the little Yellow Pages walking thing. The old Yellow Pages TV ad with fingers in a walking motion. That's exactly what he did to me. And I said, well, no, but there's lots of people who don't walk who have full quality of life. And he just kind of irritated with me and left the room at that point. Conger called her bosses, the women who were in charge of Sarah's care. One of them later testified before the state legislature about this incident. McSweeney's caregivers decided to file a formal complaint with the hospital. Sarah, it said, wasn't being seen as a whole person.

That's the way Conger put it. We made multiple requests to speak to officials at the hospital, but they declined. Doctors sometimes see a person like Sarah McSweeney with multiple lifelong disabilities as someone with a lesser quality of life. That's not how her advocates saw her. When McSweeney said she wanted to work, maybe as a greeter in one of those stores in the mall she loved, Susan Gustafson, a veteran at Community Access Services, said, okay, let's figure it out. She used a voice output device called a DynaVox. Sarah got trained on how to use a voice machine that would speak for her. Light bulbs in aisle seven. Gustafson told the medical staff at the hospital about it.

And when they asked, why does this disabled woman have medical orders for a full code? She explained something else. McSweeney wasn't afraid of being on a ventilator. And I did say that Sarah has friends who are vent dependent 24 hours a day. They went with her to the mall, to the movies. That is a norm for Sarah. That is not extraordinary. It was definitely received as extraordinary from the hospital staff. They were blown away. After Sarah's agency filed the complaint with the hospital, one thing changed. Staff at the hospital started calling with regular updates. Emily Brayman runs the guardianship program for the Arc of Oregon.

That's the agency that had long been Sarah's guardian. We were getting notified that it sounded like she was getting better, that things weren't that bad, that she was pretty status quo. Brayman thought McSweeney was about to come home. And then all of a sudden we got a call that it's dire straits. Dire straits because Sarah McSweeney's lungs were failing. Sarah's staff says they were not told about repeated instances of aspiration pneumonia, where the nutrition through her feeding tube had backed up into her lungs. She'd been in the hospital almost three weeks. On Saturday, May 9th, Barnett, the staffer who helped with Sarah's medical decisions and Conger, the group home nurse, got called to the hospital. We're standing there in the room waiting for the doctor to be paged and to come into the room.

The case manager came up and she really didn't even say hi. She just said, so I'm under the impression that Sarah was going to go for employment and she used to go get her hair done. I said, yeah, she loved to go get her hair done. And she just finished Discovery for employment. Discovery was the program that was helping McSweeney figure out a way to use that voice computer and find a job. And she looked at me and she pointed to Sarah and she's like, her. She used to get her hair done and she was going to be employed. I was like, yes. I mean, it was gross. Yeah. And then she said, well, what kind of employment do you think she could do?

Said this in front of Sarah? In front of Sarah. Yeah. Did Sarah hear that? She heard all that and she understood it. Heidi Barnett could see that Sarah in her hospital bed was listening. Sarah used her eyes to communicate. And now her eyes followed the case manager and then her friends when each spoke. She had a very worried look on her face. And it just broke my heart. Doctors and hospital social workers had questioned why this disabled woman should be given full care. Her advocates had pushed back. Now Conger could see the treatment in the hospital was not working. Sarah was desperately trying to communicate something. There was no smiles.

It was mouth wide open, arms clenched up, tears running down her eyes. And she was in distress. She was struggling to get air. And you could just see the panic and fear in her eyes. She would rest for a few minutes, take a nice calm breath for a minute, close her eyes, and then just wake up in absolute fear. She could not take a breath. Now, Conger and Barnett agreed with the hospital team. It was time to start end-of-life comfort care for Sarah. Hours later, on Sunday morning, a phone call woke up Barnett at her home. The church nurse just called me at about 3 30 in the morning and

said I'm sorry to inform you that Sarah passed away. Sarah McSweeney didn't die of COVID-19. She was tested twice and the results were negative. She died of aspiration pneumonia. That's a serious medical condition but usually it's treatable. A doctor had told Kimberly Conger that Sarah needed to go back to the ICU. It didn't happen. That she needed to be put on a ventilator, but then she wasn't. The issue wasn't a shortage of ventilators. Oregon was sending ventilators to New York. I don't feel like they, and this is my personal opinion, I feel like they didn't feel like she was worth that. We asked the hospital. A spokesperson for Providence Willamette Falls Medical Center said, we are not able to comment on the care of

a specific patient and added, we are committed to providing compassionate, appropriate, and excellent care to all who come to us without regard to ability or disability. In reporting on Sarah McSweeney, NPR investigated about a dozen cases in Oregon. We talked to lawyers, state officials, doctors, service providers, and people with disabilities. We made public records requests. We found multiple cases in Oregon where people with disabilities and elderly people were denied hospital care or treatment or pressured to sign a do not resuscitate order. In March, Disability Rights Oregon received another complaint and we investigated and substantiated it. That's lawyer Jake Cornett talking to NPR about another case, one he told state lawmakers about in June. A case in another hospital in another part of the state of another woman with a disability.

Being inappropriately influenced about life-sustaining medical treatment. He says the doctor pressured the woman to sign an order to forego life-saving care. The woman with an intellectual disability needed to be on a ventilator and fast. But a doctor at the hospital in Pendleton, Oregon, objected. And the physician in that case talked about the, quote, low quality of life of the person with a disability. Cornett runs a federally funded legal group, Disability Rights Oregon. It protects the rights of people with disabilities. Cornette's attorneys got the woman transferred to

another hospital, one that put her on a ventilator. After being very, very sick, she survived. In another case, staff at a group home took a 64-year-old man to the hospital with symptoms of COVID-19. The man has a significant intellectual disability. He's a quadriplegic. He can't speak. He's fed through a tube. Sarah Frazzini, who runs the Group Home agency, says emergency room staff refused to test the man. And one medical staffer said out loud and with anger, Giving the COVID tests would be a waste of valuable

PPE. They didn't want to use their personal protective equipment for such a disabled man. I think people tend to think that these are just dystopian stories that would never happen, but they do and they have and they will. That's Oregon State Senator Sarah Gelser testifying at that legislative hearing. Gelser looked into these cases. She wrote legislation that became a law in July. It said doctors in Oregon cannot force someone with a disability to sign a do-not-resuscitate order. Someone like Sarah McSweeney.

She was so happy and goofy and funny. The last word about Sarah McSweeney goes to Heidi Barnett, who helped McSweeney make decisions about what she wanted in her life. I was lucky to know her for the last three years, and I got to know her and how she communicates and what's important to her and how she jokes around. And I used to tease her that she was a princess and I was going to buy her a tiara, you know, and, and she'd laugh, you know, and she was so much fun. And, and even though she had these medical issues, she was vivacious. She just lived her life and she was a beautiful person. And it just,

sorry, I just think she could have gone out better. They owed her more respect than she got. For more of Joe Shapiro's full investigation into denial of care for Americans with disabilities, you can find a link in our episode notes. It's Consider This from NPR. I'm Audie Cornish.