Early fears that the lives of the 56 million Americans living with a disability would be at risk of disparate care during the COVID-19 pandemic are coming to fruition. The death of a 46-year-old person with a disability from COVID-19 exposes the frightening reality that many people with disabilities live with. If they contract the virus, the provider’s disability biases can result in inequitable care.
Last month, Michael Hickson, a 46-year-old man, was refused medical treatment for the virus, and life-sustaining care was removed by medical staff at St. David’s South Austin Medical Center in Texas. Six days later, he died. The fact that Mr. Hickson was a person with a disability was the justification his physician gave.
In May of 2017, Mr. Hickson suffered a sudden cardiac arrest while driving his wife Melissa to work, resulting in brain damage that caused him to lose the ability to move.
I have worked for decades as an occupational therapist with people recovering from brain injuries similar to Mr. Hickson’s and vow the majority continue to hold a vital and central role in the lives of spouses and children. I have also witnessed people who recover over an extended period, returning home and participating in everyday activities in ways their medical team thought impossible.
No choice was given to Mr. Hickson’s family during the five-minute conversation with his physician describing the hospital’s rationale for removing his lifesaving nutrition lines. In a statement on its website St. David describes a court-appointed guardian who had the decision-making power over his family and concluded with medical team collaboration to discontinue care. A statement by the hospital’s CEO describes how ill Mr. Hickson was and the legal processes that gave them the power to make this decision.
The local chapter of ADAPT has worked to expose this action as local and national media attention is inexplicably almost non-existent. This case is slowly gaining recognition only because the family recorded the session with the physician and reached out to a pro-life activism group to help share their story.
While the nation cries out to expose murders of Black lives at the hands of police, there must be an equal outcry for ending disabled lives at the hands of state-appointed guardians. This is especially troubling when family voices are overpowered.
The reasons given for withholding treatment are blatantly and illegally discriminatory under recent federal HHS Office of Civil Rights COVID triage rulings. The rulings explicitly state that crisis standards of care must ensure that the criteria for providing care, including lifesaving care, does not discriminate against persons based on disability and age. Stories of extreme, extended, and expensive lifesaving approaches for COVID-19 victims are heard daily for people without disability.
There are ethical concepts at conflict regarding the course of removing artificial life support technology when a person is considered to be brain dead. There are also do-not-resuscitate (DNR) orders informing staff that cardiopulmonary resuscitation (CPR) should not be performed in the event of the death of a person in their care. Neither scenario fits in the case of Mr. Hickson. Before becoming ill, he engaged with his wife and family, and he did not die of natural causes. The hospital, under orders from the state of Texas, withdrew care.
The civil rights rulings from the Department of Health and Human Services specifies that patients who require additional treatment or resources due to age or disability should not be given a lower priority to receive lifesaving care. The Office of Civil Rights of this country is in place to help enforce that all citizens of this country are entitled to the same level of care. Both Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans with Disabilities Act (ADA) of 1990 prohibit health care providers and institutions from discriminating against persons with disabilities in the provision of services based on their disability. This law exists because of historical abuses and atrocities by the state toward groups of society deemed unworthy. A history that may be repeating itself if Mr. Hickson’s incident is, in fact, not an isolated occurrence, which many people with disabilities fear it is not.
If we are at a place in history that we can question and answer who qualifies for care and is selected by the state to die, our country is moving toward a scary future. The lasting effects of COVID-19 may include political and policy changes that emerge that support this type of practice by a provider or state, or condemn it.
Laura VanPuymbrouck, Ph.D., OTR/L, is an assistant professor in the College of Health Sciences at Rush University, Chicago, in the Department of Occupational Therapy. Her research examines the health care and health disparities of people with disabilities.