Part of the Hippocratic oath says, “I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being.” The idea of this sentence is for doctors to look beyond the symptoms and status of the patient to see the person who is lying in a sickbed or visiting a hospital. Every patient is a person with a family, with emotional needs, and with a desire to get better.
However, this part of the oath is often forgotten, especially when crises arise. In early February, the Department of Health and Human Services’ Office for Civil Rights (OCR) issued guidance reminding healthcare providers to care for each patient as a person and to never discriminate based on a patient’s disability. No matter how bad the COVID-19 pandemic gets, patients with disabilities still deserve quality treatment.
Many advocates wish this guidance had been issued sooner, but the content serves as an important reminder that people with disabilities are not just potential outcomes in hospital beds. They are humans living fulfilling lives.
Understanding the HHS guidance
The guidance highlighted the role of Section 504 of the Rehabilitation Act of 1973, which prevents discrimination of any kind against people based on their disabilities. This section applies to accessibility in buildings, employment, and healthcare. The HHS guidance emphasizes this section even during a national pandemic.
“Federal civil rights laws continue to apply during any public health emergency, including COVID-19, and OCR continues to enforce laws prohibiting discrimination on the basis of disability,” the HHS states.
The guidance delves into frequently asked questions on maintaining the standard for care for people with disabilities while addressing accommodations and allocation of limited resources. The statement is clear: doctors cannot determine who deserves treatment and who will have a lower quality of life compared to other patients.
“Our civil rights laws stand no matter what, including during disasters or emergencies, and it is critical that we work together to ensure equity in all that we do for all patients,” says Xavier Becerra, Secretary of Health and Human Services (HHS). “Protecting people with disabilities from being discriminated against in crisis situations is a critical part of [our] work, and we are continuing to evaluate our operations department-wide to ensure accessibility.”
The ethics of care has been a popular topic throughout the pandemic
Media outlets and other influencing bodies have been speculating about prioritizing care since the start of the pandemic. As soon as the Coronavirus began to spread across the country, many wondered (and worried) how limited resources would be allocated if hospitals filled to the point of breaking down. If doctors can’t treat everything, who gets saved?
Daniel Wikler, professor of ethics at Harvard, speculated about this in April 2020. He discussed the concept of save-the-most care, where healthcare providers focus on patients that are most likely to survive in order to care for the vast majority of patients at the expense of the few.
“We must reject what often seems optimal in ordinary times, such as first-come, first-served, or even a lottery,” Wikler wrote for the Washington Post. “These choices risk filling up ICU beds with patients unlikely to emerge alive, at the cost of the deaths of multitudes of patients who are likely to survive if given temporary care. These latter must come first, even if it means holding open an available bed on pain of death to a lower-priority patient.”
Of course, this is an incredibly uncomfortable discussion, but Wikler wasn’t the only one going over these ethics at the start of the pandemic. Dozens of economists, health professionals, and ethicists debated what could happen if the pandemic threatened to break down society.
The New York Times shared the opinions of two researchers who discussed the value of prioritizing patients based on age. One argued that a 20-year old should be given priority care because they haven’t had the chance to live a full life. Another argued that a 50-year old should be prioritized because they have lived a full life and have more wisdom and knowledge to bring to society.
What few ethicists are willing to outright say – at least in print for national publications – is that people with disabilities would frequently be listed as low-priority if hospitals ever reached the point of rationing care. Their caregivers, coworkers, family, and friends would likely be prioritized because their lives are viewed as having more value.
Disability advocates fight to be heard
Understandably, people with disabilities are tired of constantly being devalued. In January 2022, activist Imani Barbarin created the #MyDisabledLifeIsWorthy hashtag to raise awareness about how most people approach care for people with disabilities. She used this tag after Dr. Rochelle Walensky, head of the CDC, praised the COVID-19 vaccine’s success rate, saying that most ill-effects from the jab came from people with at least four comorbidities, “who were unwell, to begin with.”
Barbarin uses this tag to explain how some write off people with disabilities as if they are rarely expected to survive. Rather than caring for vulnerable populations, Americans seem to be casting off people with disabilities as natural expenditures.
This pattern of disrespect continues when politicians argue that death is a natural part of life and necessary for the economy and the country as a whole. The "collateral damage" justification for their position is hardly something people with disabilities would agree with − a predictable rationalization for those who reach their conclusion without incorporating the disability community.
Biased treatment extends beyond the COVID-19 pandemic
While many of the discussions on ethics started because of the COVID-19 pandemic (and the HHS guidance specifically addresses the coronavirus) bias in healthcare was a serious issue before 2020. Many states still allow doctors to prevent patients with disabilities from receiving organ transplants. These doctors can deny patients entry to the transplant list if they feel like the patient won’t be able to care for themselves or if they feel like there isn’t a good chance of survival because of pre-existing conditions.
Many activists with disabilities, including Charlotte Woodward (notable for her popular and informative TikTok videos), highlight how they are just as deserving of care as their peers. Their lives are just as valuable and they deserve to extend their lifespans and live without pain.
Even in 2022, people with disabilities still have to fight to prove their lives are just as valuable as any other person's. They have to fight for access to medical care and strive to receive treatment with the same quality as other patients around them.
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