“I have a dread that I carry with me when I go to the doctor, about attitudes toward me,” a colleague recently told me about his fears of going to the emergency room during the COVID-19 crisis.
His concern is based on his perception of the doctors’ bias due to his disability. He lives a full and active life with a physical disability from a spinal cord injury acquired 2 decades ago. Yet his experiences with his healthcare provider are common for people with disabilities.
As a researcher, I examine how bias informs attitudes of allied health care providers and health care students. Despite holding explicit or conscious attitudes of acceptance and little prejudice, their implicit or unconscious attitudes reveal negative attitudes toward people with disabilities. Studies show providers prefer treating non-disabled people. This is similar to the majority of people.
During COVID-19, the fear for persons with disabilities that they will not be treated ethically or fairly is real. Providers face making decisions on who has access to life-saving approaches in caring for those with COVID-19 and who does not.
According to a recent report by Johns Hopkins, there are about 46,500 medical intensive care unit beds in the United States and another 46,000 that could be converted if needed. The evidence is clear that there is a discrepancy between supply and potential demand.
With nearly 61 million people with disability in the United States, that is approximately one in four.
According to the Centers for Disease Control, there were 330,891 cases and 8,910 deaths across the country with the majority of infections a result of close contact. Given that the CDC reports most Americans will become infected with the virus, although most mildly, physicians will likely face some of these ethical dilemmas.
In Italy, shortages in medical staff and equipment such as ventilators and ICU beds is forcing a triage approach for who receives care.
Recent requests to the White House by the American Hospital Association, American Medical Association, and American Nurses Associates to increased funding for health care services, equipment and facilities are a result of these organizations recognizing a lack of preparedness to provide care to rising numbers of individuals infected with COVID-19. In the meantime experts in disaster preparedness are contemplating methods for how to ethically ration lifesaving interventions.
The disability community is noticeably concerned about the shortages based on a history of policy decisions and legislation that prejudice against persons with disabilities results in compromised services.
In 2019, almost a full year prior to the pandemic outbreak, Journal of the American Medical Association editorial described processes for rationing healthcare for cost control. These same approaches could translate for shortages in manpower or medicine in the current crisis.
One recommendation was to use quality of life indicators as a rubric, which clearly discriminate against a person with disability. While some may believe the quality of life for a person with disability is ‘less than’ compared to a non-disabled person this is false.
These assertions complicate the additional risks and consequences faced by people with disabilities. Those include popular misconceptions that underlying health conditions are part of a person with disabilities’ daily life and living healthy with disability an impossibility.
There is also backlash and inaccurately fueled stigma that a person with disability might be more likely to carry the virus. Add to that the inability for many with disabilities to totally isolate due to the use of caregivers, and the inability to access daily and routine goods, including necessary medications.
The disability community is vigilant on issues related to healthcare decisions that seem to be for the better good of the person as well as society but are maleficent.
Efforts by disability advocacy organizations such as The Arc of the United States and Access Living a Center of Independent Living are pushing to ensure the third COVID-19 stimulus bill contains important provisions critical to the health and lives of people with disabilities.
Providers who hold stereotypes of their patients with disabilities appear to have bias that informs their clinical-decision making. This is true when well established standards of care are absent or when demands on provider time require they make decisions quickly.
Providers experience both of these conditions with the rising numbers of COVID-19 in the U.S. and likely automatically activating unintentional implicit biases toward people with disabilities.
With the realities of the spread of COVID-19, shutdowns in cities and states across the country, many feel vulnerable and uncertain about the present and the future.
Providers can help minimize the extraordinary anxiety of their patients with disabilities by being aware of their bias and following recommendations by the Institution for Healthcare Improvement.
One of the most basic of these is to understand and respect the tremendous power and influence of unconscious bias. Another is to look at each patient as an individual, even in the most hectic healthcare scenarios.
Empathy and humanity apply to every person.
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Laura VanPuymbrouck, PhD, OTR/L, is an Assistant Professor in the College of Health Sciences at Rush University in the Department of Occupational Therapy. She is a Public Voices Fellow with The OpEd Project.