At the start of the pandemic, a small group of disability rights advocates found themselves in a race against time to save the life of a woman with an intellectual disability.
The woman was taken to the hospital with COVID-19. But the hospital, in a small Oregon town, denied the ventilator she needed. Instead, a doctor, citing her "low quality of life," wanted her to sign a legal form to allow the hospital to deny her care.
Out of that quiet fight in early Spring, the advocates — staff at a disability rights legal group, a state lawmaker and a few others — discovered something disturbing: There were many cases in Oregon of health care being rationed to people with disabilities.
At the same moment, across the country, disability groups and even a civil rights office of the U.S. government were raising a similar warning: That behind closed doors, people with disabilities, and elderly people, were in danger of being denied health care.
NPR was looking for cases too, and heard about the woman in Pendleton while she was in the hospital.
There's no reason that these examples would occur more frequently in Oregon than in other states. But the fight for that anonymous woman with an intellectual disability peeled back the curtain on health care decision-making in Oregon in a way that did not happen in other states.
That activism led to change in Oregon — including anti-discrimination legislation and new statewide policies.
It was late March when the woman with an intellectual disability contracted COVID-19. She struggled to breathe.
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.
At the hospital, the intellectually disabled woman in the hospital needed to be on a ventilator immediately.
Emily Cooper, the legal director at DRO, threatened to sue the hospital. The woman was moved to another hospital where she was placed in the ICU and on a ventilator.
Her condition was dire. There was fear, according to a letter state Senator Gelser sent to the governor's office and state health officials, that the woman had been left "without appropriate and necessary care for two days" and that the time without a ventilator had put her life at risk.
The woman's advocates worried that she might die. But after several days in the new hospital, the woman recovered. She returned to her group home.
Still, even that success left Cooper worried.
"The threat of litigation and the threat of exposing the depth and the whiff of discrimination in our state, I think, was enough to get people to do the right thing," says Cooper. "But what that meant is you needed to have a lawyer call or you needed to have someone that had the gravitas to push for that."
Most people with disabilities and their families don't have lawyers working for them. And DRO and state officials were getting more reports from around the state of health care being denied.
Gelser urged the governor and state officials to make it clear that doctors could not write blanket DNRs for patients with disabilities.
"I remain deeply concerned about the situation in Pendleton," Gelser wrote on April 10 in an email to state officials. "We only know about it because someone knew to call for help. If that call had not happened and DRO had not engaged, it is not hard to imagine the person would have died."
Gelser, in the email obtained by NPR in its records request, urged state officials to sanction the hospital. "The providers, as far as I can tell, have been given no clear signal that what they did was wrong and should not occur again," she wrote. "A strong, pointed statement about the rights of elderly and disabled people is desperately needed at this time."
The Oregon Health Authority "received a complaint in April 2020 related to patients' rights," a spokesperson told NPR. But it concluded "that we would not be able to investigate." The main allegation was against the doctor and the health authority does not have "jurisdiction over individual health care providers."
It was up to the organization that accredits the hospital, the health authority concluded.
NPR checked with The Joint Commission, the accrediting body. A spokesperson said it had not received a complaint. But as a result of NPR's inquiry, the spokesperson said, it had opened a review of the incident.
"Nothing happened to that hospital. Nothing happened to that physician," Gelser told NPR. "The health authority confirmed that, in fact, that was a coerced do-not-intubate order, that they confirmed it happened ... but there was no sanction. So there was no remedy."
Adds Gelser: "This is immoral. We do not respond to disability discrimination in the way that we should."
CHI St. Anthony is the one hospital in Pendleton. In a statement to NPR, the hospital said: "For reasons of patient confidentiality, we are not able to comment on any specific situation or patient. We are committed to providing compassionate and high quality care to every patient, without regard to anyone's ability or disability. St. Anthony Hospital categorically denies any allegations to the contrary. We are unaware of any complaint to the Oregon Health Authority such as you have described."
NPR reached out to the disabled woman who survived COVID-19. But the woman, traumatized and confused by her time in the hospital, does not speak about it.
Federal laws, notably the Americans with Disabilities Act and the Affordable Care Act, prohibit health care discrimination — including the denial of care — based solely on a person's disability.
The Office for Civil Rights at the U.S. Department of Health and Human Services explained the law in guidance at the start of the pandemic. When care is scarce, doctors are allowed to decide who gets it and who doesn't. They can decide who is most likely to do best with that treatment, by making an "individualized assessment of the patient" based on objective medical evidence.
But they can't rule out people because they have a specific disability — those with dementia, or those who use portable ventilators every day to help them breathe, for example. "Persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person's relative 'worth' based on the presence or absence of disabilities or age," the civil rights office explained.
OCR issued those guidelines on March 28 after national and state disability groups raised alarm that states had issued rationing plans that allowed discrimination against elderly and disabled people. Oregon was one of 29 states that issued crisis standards of care guidelines to doctors and health care systems about how to allot scarce medical care in case of a crisis — like a terrorism event, a natural disaster or a pandemic. In early May, Disability Rights Oregon led a coalition of 21 state and national disability and civil rights groups and filed a complaint about Oregon's standards with OCR.
The near-death in Pendleton spurred the advocates to watch for other cases. One state official, who handled complaints at residential facilities, wrote to Gelser in April that her office had received and investigated complaints of hospitals and physicians "inappropriately" asking people with disabilities to fill out a legal form to limit care, according to the documents obtained by NPR.
Gelser heard reports of disabled and elderly people who had symptoms of COVID-19, went to the hospital and were denied tests or treatment or even life-saving care. "We had hospitals that were trying to immediately discharge people and saying that they needed to go home for palliative or comfort care, instead of actual treatment," she says.
There are additional cases in the public documents that NPR collected. In April, a health care system in Salem, Oregon, sent an "urgent message" to area group homes for people with disabilities, telling them not to bring residents with symptoms of COVID-19 to the Emergency Room unless "they are so sick they require hospitalization," according to the letter.
That was alarming, Gelser says, because it "discouraged people from bringing in clients that needed care. It also indicated people would be discharged prematurely — and into group homes that didn't have the capacity to provide appropriate care."
A spokesperson for Salem Health said it had focused in early Spring on being prepared to handle a large number of coronavirus cases. "During the unknowns of the spring surge, this meant preserving hospital capacity for those who truly required hospital-level care," the spokesperson said, adding that the system followed state and federal guidelines for best practices and has changed its policies as those standards have changed.
The state records NPR obtained show other people with disabilities were denied COVID-19 tests or treatment when they showed up at hospitals with symptoms.
Sarah Frazzini, the executive director of Benco, a non-profit agency that provides housing and other services to people with disabilities, points to the story of one of her residents.
On April 2nd, the 64-year-old man was running a high fever and staff at his group home worried that he'd contracted COVID-19. They took him to the emergency room at Good Samaritan Regional Medical Center in Corvallis.
The man has a significant intellectual disability. He doesn't speak words. He's a quadriplegic. He can't swallow and is fed through a tube.
Medical staff in the emergency room refused to test him for COVID-19. Frazzini told the story to NPR as well as to state lawmakers in a June hearing. It would be a "waste of valuable PPE" or personal protective equipment, a member of the medical team said, angrily, in front of the man, according to Frazzini. At the time, there were shortages of PPE in Oregon and nationwide.
He was eventually tested after a staff worker for the agency that ran the man's group house insisted, Frazzini told NPR. The man was admitted to the hospital. It turned out he had pneumonia, not COVID-19.
When, after six days, he was discharged, Frazzini said in the hearing and to NPR, a physician in an online call made a recommendation: The group home should stop the man's care and nutrition and begin end-of-life hospice care. According to Frazzini, the doctor said the man, with his multiple disabilities, had a "low quality of life."
The staff who worked for him was furious. The man was not dying. His condition was the same as before he'd entered the hospital. He'd lived this way for years. Frazzini says her staff felt the doctor had seen a man with significant disabilities and made a judgment that his life didn't matter.
The man is in good health today. He lives in his group home and spends days in his favorite recliner, watching his favorite Superhero movies and enjoying the brightly colored tropical fish in his large aquarium.
The man "lives a dignified and fulfilled life," Frazzini told lawmakers. "To have to fight so hard for the COVID test, to hear statements about giving the test being a 'waste of valuable PPE' and to have the physician recommend at discharge to end his life is absolutely appalling," she said in the hearing.
A spokesperson for Samaritan Health Services said he could not comment on the care of a specific patient but that the hospital's policies had evolved since the spring based on changes in state recommendations.
In the documents obtained by NPR, there are other reports of people with intellectual disabilities told to sign a Do Not Resuscitate order as a condition before they'd be admitted. At other hospitals, they were separated from their caregivers and pressured to sign a document they did not understand.
Or, as in Sarah McSweeney's case, her guardians felt pressured.
Before she went to the hospital, McSweeney loved it when staff at her group home took her to the shopping mall to get her hair done and to country music concerts. The 45-year-old woman had multiple disabilities. She was a quadriplegic, so staff at her group home in Oregon City pushed her in her bright pink wheelchair. She couldn't swallow, so the direct service professionals — the caregivers at the group home — fed her through a gastrostomy tube that sent nutrition directly to her stomach. She couldn't speak words, but the people who worked for her could understand her by her sounds and facial expressions.
"And even though she had these medical issues, she was vivacious. She just lived her life," says Heidi Barnett, who worked with her. "She had a pretty full life. And you were blessed if you got to meet her."
NPR told McSweeney's story earlier this month.
Barnett works for The Arc Oregon in its guardianship program. She helped McSweeney make decisions about her life and health care. She helped McSweeney draft the legal document that went with her to the hospital: It said that she wanted full medical care.
But after McSweeney went to the hospital on April 21 — with a high fever--doctors and social workers called Barnett — who wrote up detailed notes of these calls — and tried to get her to accept a Do Not Resuscitate order for McSweeney.
Tests showed McSweeney did not have COVID-19. But in the hospital she had episodes of aspiration pneumonia, when fluid backed up into her lungs.
In the hospital, a doctor told Kimberly Conger, the nurse manager from Community Access Services, which ran the group house where McSweeney lived, that she needed to be on a ventilator. "We discussed the possibility of her being intubated and letting the lung rest, giving her time to heal and letting the antibiotics do their magic," says Conger.
But then the doctor questioned whether it was worth doing, citing McSweeney's "quality of life." Conger says she objected to that. "And he looked at me and goes: 'Oh, she can walk? And talk?'," the doctor asked, moving his fingers in the air in a walking motion.
Conger replied: "There's a lot of people who don't walk who have full quality of life."
McSweeney was not moved back to the ICU and not put on a ventilator. She died on May 10 of severe sepsis due to aspiration pneumonia.
"We believe there was bias and discrimination in the care provided," Anna Keenan-Mudrick, executive director of Community Access Services, the agency that provided services to McSweeney, told Gelser's committee in June.
A spokeswoman for the hospital, Providence Willamette Falls Medical Center says: "While we have conversations with patients, family and/or guardians about care options, we do not pressure or force anyone to sign a DNR order, and we are unaware of any evidence to the contrary."
"I just think she could have gone out better," says Barnett. "They owed her more respect than she got."
After McSweeney's death, Barnett says she dealt with a similar case with another client. A 77-year old man with an intellectual disability contracted COVID-19 and went to another Oregon hospital for treatment. But she says a doctor there, acting unilaterally, reversed the man's legal order for full treatment.
When Barnett and the man's advocates objected, she says the doctor stood firm, saying the man — a diabetic and intellectually disabled — was "too difficult to treat." Says Barnett: "It was absolutely flooring to me." The man survived and returned home.
One of the most common causes of poor care occurred when someone who had difficulty communicating, or had dementia, went to the hospital alone. Family and advocates were barred, for the most part, from visiting--even when the person depended upon them to communicate.
One Oregon doctor, who asked to remain anonymous in order to speak freely, told NPR about a teen girl with significant disabilities on a ventilator with COVID-19 in the ICU at his hospital.
She had difficulty speaking and, typically, relied upon her mother to communicate for her. The hospital arranged a video conference with the girl and her mother to talk about ongoing care. But when the young woman saw her mother's face on the computer screen, she sobbed uncontrollably. "It was heart wrenching," the doctor told NPR. Eventually, the mother was allowed to visit.
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.
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.
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."
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