One Man’s COVID-19 Death Raises The Worst Fears Of Many People With Disabilities

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Melissa Hickson says no one asked her husband Michael, shown here with stepdaughter Mia, if he wanted to keep getting treatment. «He would say: ‘I want to live. I love my family and my children … that’s the reason for the three years I have fought to survive,'» she says.

Melissa Hickson

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Melissa Hickson

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Since the start of the pandemic, the federal civil rights office has kept an eye on health care rationing. Specifically, it has warned states, doctors and hospitals that they can’t place elderly people and disabled people at the back of the line for care for COVID-19.

«We’re concerned that stereotypes about what life is like living with a disability can be improperly used to exclude people from needed care,» said Roger Severino, the OCR director, on March 28 as he announced guidelines for states and medical providers.

To do so, he warned, would violate laws — including the Americans with Disabilities Act and the Affordable Care Act — that guarantee the disabled and the elderly will not face discrimination when they need medical care.

Since then, Severino’s office has investigated multiple states that put out plans for limiting care and has announced settlements with four of those states.

But those plans were simply guidelines, telling medical providers what, theoretically, they could do in case they faced the need to triage care.

Much harder to determine is what actually takes place on the front lines of medical care, especially when hospitals are overwhelmed and doctors are forced to make quick decisions.

Melissa Hickson believes she saw proof that her husband was denied care because of his disability. (Hickson thinks her husband may have been dismissed as a Black man, too, but «the main reason was because of his disabilities.»)

On June 5, Hickson went to see her husband in the ICU at St. David’s South Austin Medical Center.

Michael Hickson was a quadriplegic who’d been diagnosed with COVID-19. Now he had pneumonia. A BiPap machine, a kind of ventilator that people often use in their own homes, was pushing air into his lungs to help him breathe.

Through the mask, he answered her questions with short answers. Would you like me to get you a Long Island Iced Tea, she joked. Yes, he said with a smile. Will you pray with me? Yes.

She asked him «to keep it in your mind: You will live and not die. You will live.» She asked him to repeat the words with her and she saw, under the mask of the breathing device, his lips move as he repeated it with her.

She called the kids on the phone — their five teenage children — for a FaceTime conversation. They told their Dad what they were up to. The 16-year-old was excited she was going to get her driver’s license.

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Michael Hickson with his five children.

Melissa Hickson

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Melissa Hickson

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Michael Hickson was driving his wife to work three years ago when he had a sudden cardiac arrest. It resulted in an anoxic brain injury, blindness and quadriplegia.

Melissa Hickson

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Melissa Hickson

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The difference between them and her husband, he says: «They’re walking and talking.» Her husband, he says, has «a number of medical problems.»

Melissa Hickson agrees that she doesn’t want her husband intubated. She asks if he could get Remdesivir, a drug in short supply that, studies suggest, can reduce the hospital stay of someone seriously ill from COVID-19. She wants the hospital to try some treatment to save her husband. «It doesn’t make any sense to me to not try,» she tells the doctor.

The doctor, on the tape, never mentions the issues that Dr. Anderson says led to the decision to end treatment — the sepsis and organ failure.

Hospitals call in Devan Stahl on cases just like this. Stahl is an associate professor of ethics at Baylor University in Waco, Texas.

She wasn’t consulted on this case. She doesn’t know all the details of Michael Hickson’s medical condition.

But she’s listened to the tape.

«It was very troubling. Kind of a gut punch,» she says.

«Because a treatment working or not working has nothing to do with a patient’s quality of life, however it’s deemed by this physician,» she says. «And by all accounts — by his wife — that he had a quality of life.»

Stahl says there’s research that we — all of us, and especially doctors — see someone like Michael Hickson with a significant disability and say, I wouldn’t want to live like that. And we have a bias to underestimate that person’s quality of life.

Stahl says doctors need to protect against doing that with disabled patients. «That doesn’t mean they should be triaged out of medical treatment,» she says.

Melissa Hickson says no one asked Michael Hickson if he wanted treatment. «He would say, ‘I want to live. I love my family and my children and they’re the most important things to me,'» she says. «He would probably say that’s the reason for the past three years I have fought to survive.»

On Thursday, June 11, Hickson tried to make a FaceTime call to her husband. The hospital said that she needed permission from that guardianship agency. The guardian said she needed it from the hospital.

The next morning she got up early and tried again.

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Michael participates in physical therapy after his accident.

Melissa Hickson

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Melissa Hickson

Michael participates in physical therapy after his accident.

Melissa Hickson

Later that morning she got a phone call — this time from the hospice agency. The message said: Michael Hickson had died the night before. It took 12 hours before anyone called to tell Melissa Hickson.

«Michael Hickson’s life mattered — to his wife, to his children, and to his community,» says a statement released by the National Council on Independent Living. «It should have mattered to the medical professionals charged to care for him.»

On Friday, the council, along with seven other disability groups, asked the Office for Civil Rights to investigate his death. The complaint named the hospital, its parent company and Family Eldercare, the guardianship agency. The council represents a national network of 400 centers run by disabled people to advise and advocate for other disabled people.

A spokeswoman for OCR would not say if the office would open an investigation. But sources told NPR that the office has been interested in pursuing a complaint if it thought a decision to triage care was based improperly on a person’s disability.

OCR «can’t discuss open or potential investigations,» says spokesperson Arina Grossu. If it does open an investigation, and finds that the hospital violated civil rights laws, it could then work on an agreement with the hospital to put systems in place to prevent that kind of decision on treatment from happening again. Or if a hospital fails to address a problem, the office can seek to get back or end federal funds to the hospital.

Disability groups have seen OCR as an agency that will protect access to medical care during the pandemic. Groups in multiple states have filed complaints about state triage policies — often called «crisis standards of care plans» — that they feel allow medical providers to give lesser care to the elderly and people with disabilities.

One of the most recent complaints, filed July 22, comes from national and Texas disability groups, led by Disability Rights Texas. It asks OCR to tell Texas to modify guidelines that allow hospitals to use a point scale to determine who is most likely to benefit from care when it is scarce. But the point system, the complaint says, discriminates against people with disabilities because they lose points for their disabilities and underlying medical conditions.

OCR has investigated complaints in other states and forced changes. Pennsylvania modified a system similar to the one now challenged in Texas, Alabama and Tennessee rewrote their rules to ensure that people with dementia, intellectual disabilities, traumatic brain injuries, advanced neuromuscular disease and other disabilities would not be denied ventilator and other care simply because of those conditions.

Now, the death of Michael Hickson, at that hospital in Austin, could be the next test of how doctors and hospitals, stressed by the coronavirus pandemic, provide medical care and whether they do it in a way that values the lives of people with disabilities.