By guest author Stephanie Woodward

Last summer, Michael Hickson, a 46-year-old Black disabled man who contracted COVID-19, died after doctors denied him potentially life-saving treatment and his legal guardian placed him in hospice care. Neither the doctors nor the legal guardian took the opinions of Mr. Hickson's wife into consideration when making these end-of-life decisions for Mr. Hickson and, by law, they were not required to. A year later, a new bill is pending in Texas that would change the requirements of professional legal guardians to contact next of kin and obtain their consent before critical care or end-of-life decisions are made.

Three years prior to his death, Mr. Hickson was an auto insurance claims estimator when he went into sudden cardiac arrest while driving his wife to work. As a result, Mr. Hickson became a quadriplegic and experienced a brain injury. After this incident, the court placed Mr. Hickson under the care of a temporary professional guardian while the court determined whether Mr. Hickson's wife or his physician sister would be his permanent guardian. Mr. Hickson became ill with COVID-19 while under the temporary guardianship. A doctor informed Mrs. Hickson that the medical team would not provide potentially life-saving treatment to her husband, and instead, they would transfer him to hospice care where he would die. Mrs. Hickson, in a recording, asked the doctor why they were not going to treat her husband. The doctor can be heard on the recording saying, "The decision is: Do we want to be extremely aggressive with his care, or do we feel like this would be futile? …As of right now, his quality of life — he doesn't have much of one."

Mrs. Hickson, audibly upset, asks, "What do you mean? Because he's paralyzed with a brain injury, he doesn't have quality of life?"

"Correct," the doctor replied.

Mrs. Hickson vehemently disagreed and fought for her husband to receive treatment, but the decision was left to the temporary guardian, who ignored her wishes and allowed doctors to deny the treatment and placed Mr. Hickson in hospice care, where he ultimately died.

Mrs. Hickson told news outlet The Texan, "If I had a voice to express what Michael wanted, what his children and I wanted, I believe he would be alive today. I don't want people to feel powerless like I felt."

In response to this, Representative John Smithee (R-Amarillo) authored House Bill (HB) 3063, requiring professional guardians to attempt to contact a ward's next of kin to obtain consent before critical care or end-of-life decisions are made. The bill would require hospitals to continue to treat a person until a professional guardian and the person's family come to an agreement about how to proceed.

The bill recently went to a hearing where guardians and disability rights groups testified. While some guardians said that the requirement was too burdensome because it would require them to take time to contact next of kin, advocates for the bill testified that calling or emailing a person's family is not too burdensome when that person's life is at risk.

The president of the Texas Democrats with Disabilities Caucus, Joey Gidseg, said that the Caucus supports HB 3063. She told the committee that "Paid strangers…are not qualified to make decisions about our quality of life or end of life" and that "everyday doctors tell families that their loved ones don't have a hope for their future when they are disabled."

She said that if the bill had been the law last year, Mr. Hickson would still be alive today. "We need this because guardians are supposed to be serving people with disabilities under their care. If it is too much for them to do that, they have too many people under their care to effectively provide service to."

The bill is still in committee, and Representative Smithee is committed to continuing to work on this issue.

Stephanie Woodward is an attorney who is passionate about seeking justice for marginalized communities - and has an arrest record to show for it. As a proud disabled woman and civil rights activist, Stephanie is committed to making the law work for all oppressed people. She is the founder of Disability Details, where she provides resources on Disability Rights, access, and life.