On July 24th, ADAPT of Texas filed a complaint with the federal Department of Health and Human Services Office for Civil Rights (OCR) concerning the death of Michael Hickson, a Black Disabled man, at St. David’s South Austin Medical Center. The complaint called for . . .
“. . . an investigation of St David’s South Austin Medical Center’s conduct relating to Mr. Michael Hickson, a person with multiple physical and cognitive disabilities, who died at the hospital on June 11, 2020, as the hospital refused to provide him treatment for his COVID 19, because of his disabilities. One of the doctors, in response to Mrs. Hickson asking if the reason they would not treat him was because of his lack of quality of life due to his disabilities, responded yes.”
That conversation was audio recorded and a link to that as well as a video of Mr. Hickson were included in an earlier NDY blog. In addition, NPR reporter Joe Shapiro, who has long followed the disability rights movement, authored perhaps the most thorough media article on Mr. Hickson’s story so far: One Man’s COVID-19 Death Raises The Worst Fears Of Many People With Disabilities.
A week later, on July 31st, the National Council on Independent Living filed a separate OCR complaint, joined by seven other national organizations, including NDY:
- American Association of People with Disabilities AAPD
- Autistic Self Advocacy Network ASAN
- Brain Injury Association of America BIAA
- Center for Public Representation
- National Council on Independent Living NCIL
- Not Dead Yet
- Partnership for Inclusive Disaster Strategies
- World Institute on Disability WID
Both OCR complaints point out that the hospital’s decision to withhold treatment from Mr. Hickson was not, at that time in early June, based on a shortage of resources caused by the number of patients being treated for COVID-19. The hospital told NPR that the decision was made by “a medical team — of doctors, palliative care specialists, a chaplain.” The doctor also told Mrs. Hickson that further treatment would be “futile.” This suggests that the hospital made its decision under the infamous Texas “futile care” law, part of the Texas Advance Directives Act.
The ADAPT of Texas OCR complaint specifically addressed the futility issue as follows:
“We also request you look at the Futile Care section of the Texas Advanced Directive Act of 1999 to see if it violates the Americans with Disabilities Act, and/or Section 504 of the Rehabilitation Act of 1973 or any other relevant federal and/or state civil rights legislation.
“In addition, we also request you look at the process to see if the South Austin Medical Center’s committee, that concurred that supports could be withdrawn from Michael Hickson, had any input from an objective person/organization, knowledgeable about living with a disability, outside of the hospital personnel.”
The decision was also agreed to by an interim guardian appointed by the court while a guardianship proceeding between Mr. Hickson’s wife and sister was pending. The NCIL OCR complaint specifically addressed the guardianship issue:
“The court-appointed agency providing Guardianship for Mr. Hickson, Family Eldercare, acting in that capacity, approved the care and treatment regimen proposed by St. David’s South Austin Medical Center which resulted in Mr. Hickson’s death. Under Texas state law, “Sec. 1001.001(a) a court may appoint a guardian with either full or limited authority over an incapacitated person as indicated by the incapacitated person’s actual mental or physical limitations and only as necessary to promote and protect the well-being of the incapacitated person.” The role of the appointed Guardian for Mr. Hickson was to promote and protect his well-being, not be complicit in the steps that would result in the end of his life. Family Eldercare perpetuated the medical provider’s discrimination against Mr. Hickson and ultimately provided permission to execute the decisions which led to Mr. Hickson’s death. Family Eldercare in so doing, acted in violation of the purpose of their role as Guardian agency and in a discriminatory matter, acceding to the medical provider’s opinion that Mr. Hickson’s disabilities justified withholding life-sustaining care and services.”
Meanwhile, as a result of at least 11 OCR complaints challenging COVID-19 Crisis Standards of Care, involving healthcare rationing or triage policies that discriminate against seniors and disabled people, OCR has explicitly found that policies that deny treatment based on quality of life judgments are discriminatory and unlawful. OCR stated in a March 28 bulletin that “persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities or age.”
This same conclusion must be reached with respect to nonconsensual or involuntary withholding of life sustaining treatment under futility laws and policies (see NCD report on futility). OCR’s action on the futility issue would add weight to 20 years of efforts to challenge the Texas law, including a recent appellate court ruling in another Texas case involving Tinslee Lewis, previously covered in this blog. The new July 24 court ruling has found the dispute resolution provisions in the Texas Advance Directives Act to be sorely lacking in constitutional due process protections, stating that a hospital:
“. . . [I]n invoking and following Section 166.046’s committee review process, failed to provide her adequate procedural due process for the ultimate encroachment on the paramount individual interests at stake.” (page 147-8)
The Office for Civil Rights must also impose strict guidelines for treatment withholding decisions by healthcare surrogates to protect seniors and people with disabilities from the same type of harm. Surrogate decisions are a more complicated issue than unilateral decisions by healthcare providers, because a surrogate may be accurately representing the wishes of the disabled individual. But NDY has long opposed giving carte blanche authority to surrogates and insisted that constitutional standards and protections are needed when surrogates decide against life-sustaining treatment of a disabled person.
The unifying themes here are that we are not better off dead than disabled, and society is not better off without us. The pressure is mounting for the healthcare system to stop its deadly discrimination against disabled people.