Michael Hickson, a 46-year-old father of five from Texas, was sick with covid-19 when doctors reached a crossroads in his treatment. He had pneumonia in both lungs, a urinary tract infection and sepsis — a dangerous immune response leading to multi-system organ failure.
Hickson’s sister, a physician, agreed. So did the agency acting as his legal guardian. But his wife, Melissa Hickson, was horrified. She worried doctors were placing less value on her husband’s life because he was a black man who was disabled. After going into cardiac arrest in 2017 and suffering complications, he had been left quadriplegic and brain-damaged.
The disagreements over Michael Hickson’s care — amplified by an audio recording, widely shared on social media, of his wife pleading with a doctor to continue treatment — provide a rare window into fraught end-of-life decisions that are being made across the country as the novel coronavirus continues its rampage. The case puts a spotlight on issues of race, disability and family, including the different ways individuals, even within the same family, assess what makes a life worth living.
In the days after Hickson’s June 11 death, the audio recording shared by his wife has created a furor among disability rights activists across the United States who have rallied around his wife. Their outrage has been echoed by Catholic organizations and antiabortion groups, which have argued that stopping treatment was tantamount to failing to recognize the inherent value of a human life.
DeVry Anderson, chief medical officer at St. David’s South Austin Medical Center, where Hickson was treated, described his case as a “very sad and complex situation.” He said the decision to withdraw care was not a matter of hospital capacity, Hickson’s disabilities or cognitive abilities, or his race.
“This was a man who was very, very ill,” Anderson said in a written statement.
“Some people want the public to believe that we took the position that Mr. Hickson’s life wasn’t worth being saved, and that is absolutely wrong,” he added. “It wasn’t medically possible to save him.”
Hickson’s sister, Renee Hickson, a fellow at George Washington University Hospital in the District, said doctors worked very hard to save her brother’s life, but his decline was precipitous. She does not believe any of their decisions were based on his disabilities or his race.
“There is only so much medically that we can do,” she said. “And they did that for all of those days, and there was nothing more to do.”
In the recording between Melissa Hickson and the doctor in charge of her husband’s case, she expresses confusion as to how the decision to stop treatment was made and tries to change his mind. Under Texas law, such recordings are allowed as long as one party consents.
“So as of right now, his quality of life — he doesn’t have much of one,” the doctor explains.
“What do you mean?” she asks. “Because he’s paralyzed with a brain injury, he doesn’t have quality of life?”
“Correct,” the doctor responds. The hospital declined an interview on behalf of the doctor, who is not identified in the recording.
The debate over Hickson’s care has hit a nerve as crisis protocols activated by health officials in some jurisdictions would allow hospitals to ration treatments in certain circumstances, as coronavirus cases surge. Disability rights activists, among others, express alarm that disadvantaged groups — the disabled, members of minority groups, the poor — might get lower priority.
“I’ve been stewing on this for a few days as I try to come up with the right words to explain to you how much of an underlying fear this scenario is for much of the disabled community,” tweeted Steven Spohn, a popular gamer who has spinal muscular atrophy. “We live our entire lives in fear that one day a doctor will decide we just aren’t worth it.”
The Department of Health and Human Services’ Office for Civil Rights responded to such concerns this spring by probing some of the plans, issuing guidance affirming the need for nondiscrimination protections and threatening action against violators.
Devan Stahl, a bioethics expert at Baylor University, said research shows that people with disabilities often have a higher assessment of their quality of life than others do, including some doctors. That can adversely affect their medical care, Stahl said, and this bias has long been a source of controversy when it comes to medical futility laws in some states, such as Texas, that allow hospitals to override a patient or family’s wishes if they feel a treatment is not of benefit.
Stahl added that Hickson’s doctors may have been correct that he would not benefit from additional life-sustaining interventions, but it is “unfortunate that the physician stressed the quality-of-life judgment the way he did.”
“These are difficult things to say, and I want to be empathetic to physicians making hard choices,” Stahl said. “But I don’t think many are trained well enough to have these really sensitive conversations.”
I've been stewing on this for a few days as I try to come up with the right words to explain to you how much of an underlying fear this scenario is for much of the disabled community.— Steven Spohn (@stevenspohn) June 29, 2020
We live our entire lives in fear that one day a doctor will decide we just aren't worth it.
A good life
Michael and Melissa met online 18 years ago. They were both living in the Washington, D.C., area — she was working at a temp agency, and he was an assistant manager at an Enterprise car rental office. When they discovered they both had trouble sleeping, they stayed up all night talking.
She was struck by his intellect. Michael Hickson, who had been a National Merit finalist in his youth and graduated from Morehouse College, could debate everything from politics to Bible scripture, and he loved all kinds of strategy games and puzzles — Sudoku, Hearts, Monopoly. (“He always won,” she recalled.) Melissa said it wasn’t long before they began talking about the future. They married just two months later.
“The only things on his list for his entire life were to have kids — and lots of them — and to buy a house,” she said.
The first goal they achieved — five kids in quick succession. With so many little ones running around, they never managed to save enough for a house. But they were happy. One of Melissa Hickson’s fondest memories dates to May 23, 2017, when two of their children — one in seventh grade, the other in eighth — were presented with academic awards. Michael Hickson had taken the day off, and she remembers how he smiled when he tied his son’s tie for the ceremony.
The next day, after dropping his kids off at school and en route to Melissa Hickson’s job, he was driving when he suddenly slumped over in his seat in cardiac arrest. He slipped into a coma and was placed on a ventilator. That marked the first time Melissa Hickson had to consider difficult health issues: intubation, medical futility, palliative care.
After her husband had been in a coma for weeks, it was not-so-gently suggested that she consider withdrawing treatment, she said. But she had never felt so certain that her husband would want to see his children grow up.
The past three years have been difficult, with Michael Hickson in and out of hospitals for surgeries to address complications. He was blind, could not swallow and had to be tube-fed — all manifestations of the damage his brain sustained.
His sister, Renee Hickson, said that while he could carry on a conversation and remember facts such as her birthday and his social security number, there were many gaps. He could tell her how much he loved it when she snuck in gumbo, or chocolate, and put a few bits on his tongue. But he couldn’t rattle off a list of breakfast food items when asked. He could help her pick a book to read — the most recent was Octavia E. Butler’s award-winning science fiction novel “Parable of the Talents” — and tell her he enjoyed it. But he had no concept of time.
“Michael was a genius,” she said. “So cognitively was he the person he was before 2017? Absolutely not.”
Melissa Hickson tries to emphasize the good parts. She said that despite her husband’s condition, he could engage in conversation about their children’s lives and was often joking with them.
“We would give him updates and he would ask questions. When my daughter told him she was turning 21, he laughed and said, ‘Don’t drink,' ” she remembered.
If Melissa Hickson was the voice of hope, his sister was the pragmatist.
Renee Hickson said she believes her sister-in-law’s love made her believe, against all reasonable evidence, that her husband was just going to get up one day and be back to himself. “Unfortunately, you have to let go of the life you thought you were going to have,” she said. “You have to live in reality.”
The question of when to stop a treatment or keep going is one of the most difficult questions doctors and families face when it comes to the severely ill.
The family conflicts over Michael Hickson’s care were already intense before he got covid-19, the disease caused by the coronavirus. After another hospital stay earlier this year to address an infection, doctors wanted to discontinue rehabilitation and put him into a nursing home because they felt his progress had plateaued.
Melissa Hickson said she believed they were selling her husband short, and she exchanged heated words with some of his providers. At around the same time, his sister applied to be his guardian.
In court documents filed Feb. 12 by a county investigator charged with determining whether Michael Hickson was incapacitated enough to require a guardian, a hospital manager complained that Melissa Hickson had rejected the facility’s efforts to transfer him out of the hospital, which kept her husband there for months after he should have been discharged. Melissa Hickson had “unrealistic expectations” as to the level of care her husband required, the manager said.
Jill Jacobs, a social worker from Fairfax, Va., active in the disability rights movement who contacted Melissa Hickson after she heard about her husband’s case, said disputes over care for such patients are not uncommon: “They will turn family members against each other.”
She said courts are known to lean toward guardians who don’t create waves — rather than those who would aggressively lobby for their loved one. Jacobs said that while Melissa’s advocacy may have been inconvenient for the hospital — and a financial burden — she did it to protect her husband.
While the family awaited a full hearing, the court in February appointed a temporary guardian from Family Eldercare, a local nonprofit that advocates on behalf of older adults and adults with disabilities.
Family Eldercare said in a statement that it “consulted with Mr. Hickson’s spouse, family, and the medical community on the medical complexity of his case” but acknowledged that “end of life decisions when families are in disagreement can be especially difficult.”
Which is why, on June 6, Melissa Hickson found herself all but powerless in that tense conversation with the doctor in the hospital hallway.
“So the fact that you’re killing someone doesn’t make sense in your mind?” Melissa Hickson asks.
“At this point,” the doctor responds, “I don’t think it would be humane or compassionate to put a breathing tube in this man.”
Melissa Hickson said that as she drove home, she felt numb. For her, the desire to keep pushing for treatment for her husband was about faith and love and hope, vs. medical statistics. Wouldn’t compassion dictate trying everything you could to save someone before giving up?
As she struggled, unsuccessfully, to find an attorney to help her, the hospital withdrew treatment and put her husband into hospice care.
Melissa Hickson said she called every day asking to visit or FaceTime him, but everyone was always too “busy” at that moment and promised to call her back. They never did. Five days later, her husband died without her having had a chance to see him again.
Alice Crites contributed to this report.