A 45-year-old woman who loved going to Starbucks with her friends, writing letters and listening to music went to the emergency room in Oregon City in March because she had a fever.
One of the first questions medical professionals asked was whether the woman, Sarah McSweeney, had signed a document allowing physicians to withhold medical care.
“Which is a weird question when the only thing the person has is a fever,” said Emily Cooper, legal director for Disability Rights Oregon.
Hospital personnel also immediately asked questions about the woman’s “quality of life,” Cooper said.
“Talking about quality of life is essentially code for ‘your life or quality of life does not have the quality or value I recognize,’” Cooper said.
Three weeks later, McSweeney died while in the hospital.
Even before the arrival of COVID-19, people living with disabilities — McSweeney was non verbal and in a wheelchair — had to worry their lives could be seen as less valuable by medical professionals who do not know them. Now, in the midst of a pandemic where medical personnel are trying to conserve scarce equipment such as ventilators and emergency beds, the fear is exacerbated.
On top of concerns about rationing care and equipment, add another: Hospitals have been preventing visitors, in an effort to curtail the spread of coronavirus. Those policies mean people like McSweeney and dozens of others have not been allowed to have guardians with them in the hospital.
A bill signed by the governor this week, Senate Bill 1606, will change that. The bill requires hospitals to let a guardian or advocate be in the hospital with those who need the support.
Sen. Sara Gelser, D-Corvallis, who sponsored the bill, said there are civil rights protections for people who have disabilities in the medical settings. Those shouldn’t go away in the midst of a pandemic, Gelser said.
From the start of McSweeney’s time in the hospital, her guardians were pressed to sign a do not resuscitate order, according to submitted testimony from Disability Rights Oregon staff.
“It was clear to Sarah’s guardian and care team that the hospital did not believe she lived a quality life based on her disabilities,” the testimony reads. “When Sarah’s team tried to explain to the hospital that Sarah lived a very full and promising life, the hospital staff replied in a sarcastic and surprised manner, ‘this girl?’”
The recently passed legislation also clarifies that hospitals cannot prevent a person from receiving care, even if they don’t have an advanced care directive. Some hospitals were telling guardians and family members a person could not be admitted unless they had a directive.
Cooper said the Disability Rights Oregon office started receiving a steady stream of calls starting in March.
The narratives were similar: Guardians and family members of a person with a disability were being blocked from entering the hospital due to hospital guidelines to limit visitors in the midst of the pandemic.
In Corvallis, a 64-year-old man entered the hospital with pneumonia-like symptoms. Initially, hospital staff declined to test him for COVID-19. One of the medical professionals said loudly and within earshot of the man it would be a waste of protective gear to do so.
The man is a quadriplegic, has limited ability to communicate and receives nutrition through a tube. He was eventually tested — the result was negative — but admitted to the hospital. His caregivers, who weren’t allowed to enter, received regular briefings from one attending physician who happened to know the hospitalized man from previous visits and communicated he was improving.
Upon discharge, however, another physician — who had no history with the man — recommended that his care and nutrition be discontinued and end-of-life measures be taken. His guardians were stunned.
Since they hadn’t been allowed in the hospital, “We couldn’t tell the discharge team the importance of his life and the quality of care he does have regardless of his disability,” said Sarah Frazzini, the executive director of Benco, a nonprofit that serves people with intellectual and developmental disabilities.
Frazzini said hospital staff had a skewed perspective. It’s hard to know anyone in a span of two to three days, especially someone who is non-communicative, she said.
His guardians fought back.
The man is now back home, watching a variety of his favorite television comedies and socializing with his housemates.
McSweeney died of asphyxiation pneumonia, but tested negative for COVID-19. Fluid entered her lungs, which can happen if a feeding tube isn’t properly cleaned, Cooper said, and that was not something she was experiencing when she entered the hospital.
Hospital records show McSweeney was in distress leading up to her death, according to Cooper.
“I don’t think Sarah got the care she needed based on assumptions about her quality of life, and those assumptions are based on stereotypes and biases we have faced for far too long,” Cooper said.
