How ableism influences who gets care during a pandemic
Photo by Celeste Noche for NPR
By Louise Kinross
Do not forget Sarah McSweeney’s name.
The 45-year-old Oregon woman with disabilities was taken to hospital in April by group home staff who worried her fever might be a sign of COVID-19. She didn’t speak, but she arrived with a legal document from her guardian that stated she wanted all life-saving treatment. For the next three weeks, doctors and social workers at the hospital argued the order should be changed to DNR—Do Not Resuscitate.
The case was the focus of this NPR investigation into denial of care based on disability during the pandemic.
One doctor told group home staff it was critical McSweeney be put on a ventilator to treat aspiration pneumonia. But he then said he wanted to rewrite her care document to say she should not be intubated or resuscitated.
“He said intubating her was a matter of risk versus quality of life,” one group home staff member recalled. “I was like ‘But she has quality of life.’ And he looked at me and goes, ‘Oh, she can walk? And talk?’”
Later, a hospital case manager made disparaging remarks to group home staff who shared McSweeney's desire to get a job, and her love of having her hair done. “She pointed to Sarah and she’s like: ‘Her. She used to get her hair done and she was going to be employed?’”
McSweeney wasn’t intubated, and she died of severe sepsis due to aspiration pneumonia, which is usually treatable.
Last year, BLOOM wrote about how pandemic guidelines have traditionally excluded people with disabilities from receiving critical care.
For example, these 2015 New York State guidelines permit doctors, during scarcity, to take away a ventilator from a person who arrives at hospital with their own machine used in the community or in long-term care.
“The philosophical framework that is frequently cited is utilitarianism, premised on a conception of the good that is based on that which brings the greatest benefit to the greatest number of people,“ says Dr. Franco Carnevale, a clinical ethicist, nurse and psychologist at McGill University in Montreal. “In my opinion, it's a grave ethical error to use only this kind of thinking in the current COVID-19 situation, because some are arguing that we can withhold medically required care from one person in order to care for another person deemed of greater value to help survive. This is based on non-clinical criteria that have nothing to do with the efficacy of the treatment.”
The NPR story is one of a series that looked at about a dozen reports of Oregon doctors and hospitals denying equipment like ventilators to an elderly or disabled person; insisting they sign a DNR, when they couldn’t understand it or in the middle of a crisis; or denying a COVID-19 test. The investigation points out that at the time McSweeney was denied a ventilator in Oregon, there was no shortage in the state's hospitals.
In McSweeney’s case, “unilaterally disregarding a previously established plan for care, which she or her surrogate decision-maker consented to, could be a paternalistic breach of the ‘respect for persons’ that she is owed,” Dr. Carnevale says.
A similar situation was seen early in the pandemic in Britain, when general practitioners issued blanket DNRs for elderly and disabled residents of care homes, without consultation with patients or their families.
Toronto Star contributor Lisa Bendall wrote before Christmas about how common it is for people with disabilities to be offered a DNR when they go to hospital seeking treatment. “We were stunned that a doctor charged with my husband’s care could so blatantly disregard his life, even one in which he potentially used a ventilator (as a couple of our friends did),” she wrote.
In his piece about McSweeney, NPR reporter Joseph Shapiro referred to the “disability paradox”—the large gap between how a person with a disability rates the quality of their life and what a doctor would rate it, as evidenced by numerous studies.
Group home staff in the NPR story said that McSweeney wasn’t afraid to be ventilated because she’d used a ventilator when hospitalized for pneumonia before, and she “has friends who are vent dependent, 24 hours a day, with traches… They participate in the same community activities together. They hang out...That is the norm for Sarah.”
In this BLOOM video from 2011, Dr. Carnevale talks about how his own assumptions that life for families caring for a ventilated child at home would be primarily one of hardship shifted during a research study. “As we recruited families to the study, what was interesting was the way they kept trying to redirect us,” he says. “They saw that we were out to document all of the stresses and hardships, but it took us a while to notice that they were trying to tell us that that's not all that their life was. They tried to say 'This life is hard, but you know there are a lot of good things too. It's also rewarding.'”
One of the greatest challenges, the parents said, was a devaluing of their children by health-care professionals. “When we return to the hospital because our child has pneumonia, each time you ask us do you want everything done? What are you telling us? Do you ask every child with asthma that shows up here, or with diabetes, do you want everything done? You are telling us that your child's life is optional and we're okay with ending it here, if that's what you'd like. The hurt, and how offensive this is for so many families, was a revelation for me, and for our team.”
Heidi Barnett was the person at The Arc Oregon that had helped McSweeney fill out her care document, and that advocated with group home staff that she receive full care. “We had her at full code," she told NPR. ”So all treatment. Because she was young and vibrant and had a great life. And that was her wishes, that's what we gathered from her. She wanted to be alive.”
The group home filed a formal complaint with the hospital. In a statement to NPR, a spokesperson said: ”We do not pressure or force anyone to sign a DNR order, and we are unaware of any evidence to the contrary. We honour decisions by patients and/or their legal representatives. We are not aware of any care needed by any of the patients that was not provided.”
Imagine what happens to a non-verbal patient who doesn't have a care document, and doesn't have group home staff or family to advocate, as McSweeney did, on their behalf. I think of how vulnerable my own adult son, who doesn't speak, is, and how easily his agency could be quashed by a health professional with zero on-the-ground understanding of life with disability.
The hospital where McSweeney died refused multiple interview requests from NPR, and has remained silent since the story was aired.
”I hope medical professionals will hear [the stories] and think about the conscious and unconscious bias widely held by people towards those with significant disabilities,” NPR reporter Joseph Shapiro told BLOOM in an e-mail.
