‘We are dead’: People with disabilities fear they will be on losing end of doctors’ life-or-death choices amid coronavirus crisis – USA TODAY

The U.S. is currently facing a shortage of ventilators. Here's how they work and why they are so important in fighting COVID-19. USA TODAY

Shona Eakin is 50 and has cerebral palsy. She uses a wheelchair and is fairly independent though she needs help getting dressed and getting ready for bed.

Her husband, Mike, is 58 and has muscular dystrophy. He has been on a ventilator full- time for 24 years.

"Weve been hoping and praying we dont end up in the hospital for anything," Shona said.

"Typically when he goes into the hospital, they let him bring his own ventilator in. The worry now" she continues, is "Will they take his ventilator and use it for someone who has COVID-19?"

As the number of COVID-19 cases and corresponding deaths accelerates across the country, one of America's most vulnerable and most overlooked groups of citizens worry not just about how to get food and pay rent in a locked-down nation, but whether they will even be considered treatable if they get sick.

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A nonprofit group in Arizona is making medical-grade gowns to support efforts of the medical community in the state responding to the COVID-19 pandemic. Delivery of fabric for the gowns was made possible by the Arizona Air National Guard. (April 14) AP Domestic

In essence it comes down to the question of who chooses who will live and die when allocating scarce health care resources.

Federal and state health officials have been warning for weeks of critical ventilator shortages, so much so that President Donald Trump recently invoked the Defense Production Act to force General Motors to retool an automobile assembly line to produce ventilators.

But as the novel coronavirus peaks in New York, New Jersey, New Orleans and Detroit, people with disabilities fear they will wind up on the losing end of the life-and-death choices doctors are forced to make.

"Are we going to be valued as an individual, and given the same quality of treatment as somebody else?" sa said Shona, who lives in Pennsylvania.

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Her husband owns his ventilator, but she worries that rental companies might try to recall and reallocate equipment to people to someone who might be better able to survive, or worse, better able to pay.

"It's always in the back of your mind," she said. "What could they do if youre in a state of shortage and dont have enough equipment, and it comes down to somebodys judgment?"

Gabe Trujillo, 36, of Arizona, also worries that if he has to go to the emergency room, his wheelchair and his asthma could put him at the end of the queue for treatment.

"That's definitely scary just to think about as a person with a disability," said Trujillo, who has Hopkins Syndrome, an extremely rare form of permanent paralysis triggered by a severe asthma attack.

"It definitely has me worried now, not just for myself, but other people with disabilities," he said.

Eakin and Trujillo are not alone in their fears.

Gabe Trujillo, a content producer for 12News, works from home during the COVID-19 outbreak. Trujillo became disabled after a severe asthma attack when he was 14 years old. He is considered high risk for the Corona virus and worries that people with disabilities might not have the same access to medical care.(Photo: Cheryl Evans/The Republic)

According to Pew Research Center, more than 40 million Americans have some sort of disability, the most common of which involves mobility impairment.

Disability activist Valerie Novack, a fellow with the Center for American Progress who works on the organization's Disability Justice Initiative, said that when the COVID-19 crisis erupted, her first concern was getting resources to people with disabilities.

"We don't have the infrastructure in place to simultaneously ask people to not leave their homes and get them the things they need," she said.

Those concerns quickly shifted.

"I'm very, very scared, particularly for our community, that people will die, not because they contract COVID-19, not because of physical distancing or quarantining or because they didn't get access to food or a home health aide or something like that, but because they're being refused treatment, because we don't have enough things like ventilators or hospital beds," she said.

More recently, advocates point to Italy, where the COVID-19 virus overwhelmed the country's medical system. There were stories of doctors and nurses who were moved to tears because they could not provide care for everyone who needed it.

In a March 18 article in the New England Journal of Medicine, correspondent Dr. Lisa Rosenbaum interviewed Italian doctors who were dealing with critical shortages of medical equipment in the grip of the pandemic.

"What they seemed to find far more unbearable was watching people die because resource constraints limited the availability of ventilatory support," she wrote.

One doctor, she said, "offered a hypothetical scenario involving two patients with respiratory failure, one 65 and the other 85 with coexisting conditions. With only one ventilator, you intubate the 65-year-old."

Another doctor said his hospital was taking into consideration "in addition to the number of comorbidities, the severity of respiratory failure and probability of surviving prolonged intubation, aiming to dedicate its limited resources to those who both stand to benefit most and have the highest chance of surviving."

Comorbidity refers to situations where patients have more than one serious medical condition, for instance, COVID-19 and kidney disease, and it's a subject that is being debated in the U.S. medical community in the context of how to allocate scarce resources.

Dr. David Beyda, chair of bioethics at the University of Arizona College of Medicine-Phoenix, said the decision on who gets treatment should not be made solely on whether a person has a disability.

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"A person is a person, no matter what," he said, adding that treatment decisions should always be decided on a case-by-case basis and that health-care professionals must not let stereotypes or biases against people with disabilities enter into their decisions.

In a scenario where two people are in need of heroic lifesaving measures but only one can be treated, the patient who is likely to have the best outcome is the person who should be treated, he said.

"Look at what the prognosis would be for each one of them. The one who has the better prognosis of coming out is the one who should get the ventilator," he said. "It should not be directly related to age, special needs, race, ethnicity, etc., etc. ... It really comes down to the prognosis who has the better chance of getting through this and then go with that."

Competing schools of thought among medical ethicists advocate using a first-come-first-served approach or a lottery to decide who gets care, but Beyda said those approaches could favor those who have the financial resources or are able to shop for care.

He acknowledged that a patient's underlying medical condition, whether it's a physical, cognitive or intellectual disability or a chronic condition like heart disease or diabetes, likely would be a factor in a treatment decision.

To balance that factor, Beyda said it's important for people with disabilities to have advocates in the discussion to ensure health care providers aren't allowing individual biases to color their decisions.

And even if the decision is made to not provide heroic measures, doctors still have a duty to treat the patient, Beyda said.

"If you have a comorbidity that has a poor prognosis, I still have a duty and obligation to not only care for you, but to care about you and to take care of you," he said. "And that would be me saying, 'OK, let's talk about what can we do here. ... What are some of things we can help you with?' as opposed to saying, 'Well, you know what, you've got no chance, so have a nice day."

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Still, the very idea of comorbidity scales might mean some people with disabilities would be automatically relegated to palliative care as soon as they walk in the door, and that's not a comforting thought, said Paul Timmons, founder of Portlight.org, a national organization that focuses on providing disaster strategies and relief for people with disabilities.

"I don't like to call it triage," Timmons said. "Let's call it what it is, which is care rationing someone indiscriminately choosing that your life is a higher quality than my life because I am in a wheelchair, and therefore you get to live and I do not. This is the real fear that's happening right now."

For Timmons and other disability advocates, COVID-19 is just the latest battle in a long war for recognition and equal treatment. More battles loom on the immediate horizon, and they may involve fighting on multiple fronts.

Hurricane season is fast approaching in the southeastern United States, and wildfire season is looming in the West.

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While the federal Americans with Disabilities Act prevents discrimination against people with disabilities and the 1988 Stafford Act guarantees equal access to services in an emergency, the threat of compound natural disasters along with the ongoing COVID-19 crisis means providers will be taxed even more, putting people with disabilities at even greater risk of losing access to care.

"Nashville, Tennessee, saw a tornado at the beginning of March. Salt Lake City, Utah, had an earthquake last month. Jonesboro, Arkansas, just had a tornado. These are things that are happening just right now,"said Shaylin Sluzalis, co-executive director for the Philadelphia-based Partnership for Inclusive Disaster Strategies.

"Now that we're seeing COVID-19 as sort of our overarching tsunami on top of everybody's roofs, ... what will that look like for our community?" she said.

She said that in any disaster, "the disability community is disproportionately impacted" in every facet of life, whether it's access to personal assistants, shelter or medical care.

"Honestly, people with disabilities die in those instances," she said. "We are dead. We are forgotten."

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'We are dead': People with disabilities fear they will be on losing end of doctors' life-or-death choices amid coronavirus crisis - USA TODAY