The pandemic has laid bare a problem in Oregon hospitals: People with disabilities suffer discrimination in hospitals to the point that they’re not always given access to the full gamut of medical care.
Two examples: A doctor at one Oregon hospital remarked that a COVID-19 patient with an intellectual disability had a “low-quality of life” when it became apparent that the person needed life-sustaining treatment, suggesting that treatment could be withheld. Another hospital would not allow a patient with a disability to have a personal attendant or family member with her even though the caregiver’s help was crucial.
Advocates say these recent incidents are part of a broader pattern that’s been accentuated during the pandemic, with an uptick in people with disabilities facing barriers to medical care or difficulties in accessing life-saving treatment. Testifying Thursday, they were joined by medical professionals and hospital officials who spoke to lawmakers via video about Senate Bill 1606. The legislation would forbid hospitals from denying admission or treatment to an individual with a disability regardless of whether they have a directive outlining their desire for treatment that would keep them alive, like a ventilator. Some hospitals are pushing group homes and guardians to provide one before treating patients even though it’s not legally required, advocates said.
The bill includes other rights, too. Patients would be entitled to have a designated caregiver in the hospital with them. This could be a paid or unpaid caregiver such as a family member, guardian or friend. Hospitals would have to send advance notification to Disability Rights Oregon and the Oregon Department of Human Services about a decision to end life-sustaining treatment.
“Civil rights protections are important because when people are not valued, they are harmed in times of emergency,” said Sen. Sara Gelser, D-Corvallis, the bill’s main sponsor. “That is when these rights become especially important.”
Disability Rights Oregon, a federally mandated advocacy group, told lawmakers that the problem is systemic, with cases in nearly every single hospital system.
“Since the beginning of this public health crisis, Disability Rights Oregon has seen a steady stream of substantiated complaints of discrimination and bias in the health care system and denial of rights of people with disabilities, older adults, and people of color,” the group wrote to lawmakers, adding that the problem “has already resulted in substandard care and the premature death of people with disabilities.”
Jake Cornett, executive director of Disability Rights Oregon, told lawmakers the organization would serve as a watchdog if a case “smells fishy,” but would not interfere with a patient’s legitimate end-of-life wishes.
“If it smells like fish, we need to get in there and see what’s going on,” Cornett said.
Dozens of parents and caregivers for people voiced their support for the bill.
One of them, Diane Cole of Bend, told lawmakers in a letter that she only saw her daughter twice during a two-week hospital stay with four surgeries. Her daughter is still hospitalized.
“As of today, our daughter has had four surgeries, a colostomy and been in the hospital for 25 days,” Cole wrote. “During that time, she has been asked to sign medical paperwork, make decisions and have more medical procedures than she could count that she did not understand. No one was there to help her make any decisions or talk through the procedures in a way she would understand. She did not know what questions to ask, how to ask them or how to best advocate for herself.”
The Service Employees International Union Local 503, which represents home health care and medical workers, supports the bill.
“We’ve heard some pretty harrowing stories about people with disabilities being denied the company of their chosen supports, paid and unpaid,” the SEIU’s lobbyist, Kyndall Mason, wrote. “This has resulted in catastrophic effects on people’s lives, ranging from denial of services to coercion to sign paperwork and even death.”
But some medical experts say the bill needs more vetting before moving forward.
Dr. Susan Tolle, director of the Center for Ethics in Health Care at Oregon Health & Science University, said she is “deeply saddened” by hospital policies that restricted visitors during the early days of the pandemic. She praised the intent of the bill, but said it could have “unintended consequences.” She said the bill’s language about the notification process is unclear and could force patients to receive care against their wishes.
“This cannot be put together in a few days in a short session,” Tolle said.
Andi Easton, a lobbyist with the Oregon Association of Hospitals and Health Care Systems, said the industry group supports the rights of patients to access care, but has concerns about ambiguity in the bill. The association wants a 30-day grace period if the bill is passed for hospitals to post signs and update policies.
The group also wants lawmakers to remove language that requires hospitals to notify patients of this right when they schedule services and are admitted, saying it’s unclear how hospitals will know which patients fall in this group. The association wants the bill to sunset in a year so stakeholders can decide if the law needs any changes in the 2021 session.
Lawmakers appeared open to paring down the bill if necessary, given the time constraints.
Speaker Tina Kotek, D-Portland, suggested the bill narrow down to a focus on allowing patients to have a support person with them in the hospital.
With a slew of bills to consider, lawmakers could be in the special session through the weekend.