Avoiding Discrimination while Treating COVID-19
By Maddie Mason, Senior Associate, Policy
One of the issues of great concern, as we reach a point in the COVID-19 emergency where some difficult decisions about where resources like respirators will be allocated, is fighting any conscious or unconscious bias that could result in discrimination against people with disabilities and chronic conditions. In order to fight potential discrimination, the Office of Civil Rights (OCR) at the Department of Health and Human Services (HHS) released guidance to states entitled “Civil Rights, HIPAA, and the Coronavirus 2019 (COVID-19),” which provides information for states on developing non-discriminatory rationing rules for treatments or services such as ventilators.
The OCR Guidance emphasizes that people who have disabilities should not be denied or given inferior medical care due to stereotypes or the connotation that someone without a disability has a better quality of life. The rights of people with disabilities are protected through the federal disability rights laws, including the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act.
The United States has already witnessed discriminatory rationing guidelines regarding people with disabilities in Alabama, which prompted several disability rights groups to file suit alleging that Alabama’s “Criteria for Mechanical Ventilator Triage Following Proclamation of Mass-Casualty Respiratory Emergency” (2010 Criteria) allowed for denying ventilator services to individuals based on the presence of intellectual disabilities or dementia. This initiated the OCR to act, and they stated that, as a recipient of HHS funds, Alabama is required to comply with disability and age-related civil rights statutes.
In addition, the National Health Council (NHC) has joined other patient organizations in the fight to protect the legal rights of people with disabilities, illnesses, and chronic diseases by helping in the dissemination of a guide for advocates to use when working with states and hospitals to develop rationing policies. The guide was established to ensure that patient civil rights are protected in policies that determine how resources will be allotted in the event of a shortage during this COVID-19 pandemic. The main principles outlined in the guide for advocates include:
- The lives of people with disabilities are equally worthy and valuable as those of people without disabilities;
- People with disabilities must have an equal opportunity to receive life-sustaining treatment;
- The fact that an individual with a disability requires support (minimal or extensive) to perform certain activities of daily living is not relevant to a medical analysis of whether that individual can respond to treatment;
- Doctors and triage teams must refrain from employing assumptions and stereotypes about the worth or quality of the life of a person with a disability in making decisions about medical treatment;
- Doctors and triage teams must not assume that they are free from conscious or unconscious bias in making critical life and death health care decisions, given the reality that people with disabilities have long experienced discrimination in receiving medical care;
- To avoid discrimination, doctors or triage teams must perform a thorough individualized review of each patient and not assume that any specific diagnosis is determinative of prognosis or near-term survival without an analysis of current and best available objective medical evidence and the individual’s ability to respond to treatment; and
- Doctors and triage teams must not reallocate ventilators of individuals with disabilities who use ventilators in their daily lives and come to the hospital with symptoms of COVID-19. Individuals with disabilities who use ventilators in their daily lives should be allowed to continue to use this personal equipment if they receive COVID-19 treatment at a hospital.
The United States is expected to have an influx of COVID-19 in the coming weeks, and there is concern that there will be a shortage of medical equipment, personnel, and hospital beds. It is vital that the medical community is aware of these guidelines so bias against those with disabilities is avoided.