Oregon Hospitals Advised Not To Withhold Care As a result of Of A Individual’s Incapacity

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At the start of the pandemic, an Oregon woman ended up hospitalized with COVID-19. She has an intellectual disability. And the hospital refused to put her on a ventilator that she needed. A small group of disability rights advocates intervened to ask why. And they discovered something unsettling. Some doctors seem to be rationing health care for people with disabilities. Here is NPR investigative correspondent Joseph Shapiro.

JOSEPH SHAPIRO, BYLINE: After Sarah McSweeney entered the Portland suburb hospital, a doctor said she needed a ventilator. She didn’t get one.

HEIDI BARNETT: And although she had these medical problems, she was lively. She just lived her life.

SHAPIRO: This is Heidi Barnett talking about the woman she helped. McSweeney couldn’t walk or speak words, but she was fun. She had a great personality.

BARNETT: And she was a beautiful person.


BARNETT: And I’m just sorry. I just think she could have gone out better. They owed her more respect than she got.

SHAPIRO: We told McSweeney’s story on NPR. She wasn’t the only person in Oregon with multiple and complex disabilities who was denied health care.


JAKE CORNETT: Members of the committee, thank you for the opportunity to testify.

SHAPIRO: In June, a month after McSweeney’s death, a Senate hearing raised the question: Are people with disabilities denied health care? Jake Cornett heads Disability Rights Oregon. This is a government-funded legal group that protects the rights of people with disabilities. Cornett told the legislature and then us about another case.

CORNETT: In March, Disability Rights Oregon received another complaint. And we investigated and justified it.

SHAPIRO: A case in another hospital in another part of the state – another doctor pressuring someone to sign an order to forego life-saving care.

CORNETT: And in this case the doctor talked about the “low quality of life” of the person with a disability.

SHAPIRO: This woman with an intellectual disability needed rapid ventilation. But Pendleton Hospital, Ore., Refused. Cornett’s lawyers had the disabled woman transferred to another hospital. She got on a ventilator. And after she was very, very sick, she lived.

CORNETT: It would be one thing if this were just an isolated incident.

SHAPIRO: Cornett said he and his lawyers had investigated many complaints.

CORNETT: The alarm bell should be triggered so that several cases like this occur again and again in a single state. It should convince people that this is a real problem that we need to address quickly at the state and federal levels.

SHAPIRO: NPR has investigated a dozen cases in Oregon. We spoke to attorneys, lawmakers, state officials, doctors, service providers, and people with disabilities. We have requested public documents.


SARA GELSER: I think people tend to think that these are just dystopian stories that would never happen. But they do. And you have. And they will.

SHAPIRO: This is Oregon State Senator Sara Gelser at the hearing she called in June. She also looked at these cases.

GELSER: I’ve also started getting calls from all over the state. I mean, we’ve had hospitals trying to discharge people right away and saying they had to go home for palliative or comfort care instead of actually receiving treatment.

SHAPIRO: Reports of disabled and elderly people denied care. In Corvallis, workers in a group home rushed to hospital in April a 64-year-old man with symptoms of COVID-19, a man with an intellectual disability. He’s a quadriplegic. He can’t speak. He is fed through a tube. Sarah Frazzini (ph), who heads the group’s home agency, testified to lawmakers and told NPR the hospital refused to test him. A medical staff said loudly, right in front of this man …

SARAH FRAZZINI: To give the COVID test would be a waste of valuable PPE.

SHAPIRO: You didn’t want to use your personal protective equipment on such a disabled man. It turned out the man had pneumonia, not COVID-19. And when he left the hospital six days later, a doctor made a recommendation that the group home admit him to hospice care and stop feeding because, as the doctor said, the man did not even have “quality of life” even though the man did not died and lived like this for years.

FRAZZINI: And we were shocked. We were blown away.

SHAPIRO: He’s back home now. He likes to rock out in his favorite armchair and watch his favorite superhero films. NPR asked the three hospitals in the story to comment. Everyone said they couldn’t talk about caring for certain patients. Everyone said they didn’t discriminate on the basis of disability. There was one thing in my coverage that I wasn’t sure what to make of it. All of this happened when there was no shortage of care in Oregon. In fact, Oregon lent out ventilators in April.


JILLIAN SMUKLER: Governor Brown said, quote, we’re going to send 140 ventilators to help New York because Oregon is in a better position right now.

SHAPIRO: Why didn’t Sarah McSweeny or the Pendleton woman get a ventilator? State Senator Sara Gelser, who has an adult son with an intellectual disability, believes she has an answer.

GELSER: COVID has put a huge magnifying glass on inequalities in health care for people with disabilities. For the first time we see more urgently and publicly how deadly this can be.

SHAPIRO: Gelser says there has always been prejudice against people with disabilities in healthcare. It was largely hidden. The coronavirus made it visible and then made it worse because doctors worried about possible shortages for some who decided to refuse care to others.

GELSER: Before we even had to triage, the medical systems decided to reserve resources for non-disabled people, who would appreciate the system more in case they later ran out of resources.

SHAPIRO: Gelser introduced laws.


UNIDENTIFIED PERSON # 2: So Sara Gelser, can we do Section 2? And then…

SHAPIRO: It is said that healthcare providers cannot discriminate against people based on their disabilities. Hospital systems and other lawmakers protested. They feared the language would make it difficult to make a decision.

GELSER: And my backlash was, you know, civil rights don’t end in a pandemic or at the door of the hospital. That is where they are most important.

SHAPIRO: Anti-discrimination language has been removed from Gelser’s bill. Two key parts became law, prohibiting doctors from pressuring patients to sign non-resuscitation instructions and requiring that someone with a disability who has difficulty communicating be a family member or bedside attorney may have. That was beginning to change in Oregon. This month the state released new guidelines for hospitals using anti-discrimination language.

Joseph Shapiro, NPR News.


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