Doctors with Disabilities Push Change in Medicine
Doctors with disabilities continue to push the medical community for improved treatment of those who are disabled. This is the third year of this pandemic. Patients with Long Covid are becoming more common. They will require accommodations in work and at home.
According to the Centers for Disease Control and Prevention, one in five Americans who have been diagnosed with COVID-19 still has symptoms. While symptoms vary widely, Long COVID can cause health problems including brain fog, fatigue, shortness of breath, and headaches that significantly affect people’s ability to function on a daily basis. In August, the federal government will release two reports regarding Long COVID. According to a Brookings estimate in January that 1.6 million Americans were out of work, this number has nearly doubled. Katie Bach, the economist behind that estimate, recently told Congress that it’s likely about 4 million people—or 2.4% of the U.S. employed population—have a reduced ability to work because of Long COVID.
Experts believe the potential impact on the healthcare workforce could be disastrous. “For those physicians and nurses that didn’t lose their lives to COVID,” says Lisa Meeks, a disability expert and assistant professor of family medicine at the University of Michigan School of Medicine, “they may very well lose their livelihood.” Meeks adds that the situation is especially dire given how many Americans with Long COVID may need care in the coming months and years. “We need these people in the workforce,” she says.
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While it’s not clear precisely how many health professionals will end up with Long COVID, a study published in the journal BMJ in 2020 found that health care workers were seven times as likely to have severe COVID-19 as those not in frontline jobs. Also, health care workers experienced extreme burnout and depression during the pandemic. The turnover rate has risen dramatically. According to the Bureau of Labor Statistics, nearly half of all health workers quit during the pandemic.
That’s part of why Meeks and a growing movement of doctors, medical students, and other health care workers are trying to transform their profession to make it more inclusive of both doctors and patients with disabilities through a new group called DocsWithDisabilities launched on July 27. This initiative will change culture, policies, and practice in the medical profession to increase the number doctors with disabilities. The initiative’s participants will do research on medical professionals with disabilities and develop curricula to help students in medicine learn more about the care of disabled patients. They also create recommendations for policy on issues such as physician licensure exam questions, how hospitals and schools handle COVID-19 surges, and any accommodations that they might offer to Long COVID.
“We have this culture of perfectionism in our field,” says Dr. Cheri Blauwet, a sports medicine physician at Harvard Medical School and a former Paralympic wheelchair racer who has appeared on Meeks’ podcast highlighting doctors with disabilities. That can help clinicians strive to do their best work, she says, but it also “reduces our mental flexibility towards understanding that many people, inclusive of people with disabilities, can be excellent doctors when provided the right environment and the right accommodations in order to be successful.”
‘When providers are unwell, patients are unwell’
DocsWithDisabilities, which began as a social media campaign and then became a podcast that highlighted stories of disabled health workers, will include mentorship opportunities and policy recommendations, research groups and training for doctors on ways to include more people with disabilities.
Dr. Justin Bullock, a nephrology fellow at the University of Washington and a member of the initiative’s advisory board, says he would like to see hospitals and medical schools standardize how they handle accommodations for physicians with disabilities. Bullock is bipolar and claims that although he experienced barriers to returning to residency following his suicide attempt, he has been supported at his current hospital. “Doctors have mental illness and other illnesses because doctors are human,” he says. “The more stigmatizing and more traumatizing the systems are, the more harm we inflict on providers. And when providers are unwell, patients are unwell.”
Blauwet says that being a patient and using a wheelchair has helped her become a better physician. “Anyone can read the books and learn the facts about physiology and disease processes and treatment,” she says, “but it’s much harder to teach people empathy.” Amy Addams, director of student affairs alignment and holistic review at the Association of American Medical Colleges (AAMC), says that when non-disabled medical students interact with peers who have disabilities, they can improve on this front too.
A few doctors report that they have disabilities, but studies show that there are misconceptions among doctors about the condition. These misperceptions can negatively impact patient care. Many Americans with disabilities expressed concern about the treatment they received during the pandemic. This is especially true since many Americans are now able to wear masks and take other precautions. Long COVID sufferers are now having difficulty accessing the treatment they need.
Meeks and the AAMC published a joint report in 2018 that documented experiences of medical students with disabilities. Although stories were varied, the report found many people still hide their disability because of fear of stigma or bias. The report also found that 2.7% of medical students disclosed a disability and received formal accommodations—a much smaller percentage than the average of about 11% for undergraduate programs. She says that in 2019, 4.6% of medical student disclosed a disability. Future research will reveal 6.1%.
Despite these numbers increasing Meeks also discovered that many people with disabilities are disappearing as they progress in their medical careers. An AAMC survey asked people if they identify as having a disability. It found that 11% of medical students identified themselves with a disability by 2020. According to research, only 3.1% of doctors and 7.5% of residents identified themselves as having a disability. JAMA Network Open. These findings were part of Meeks’ impetus for starting DocsWithDisabilities.
“There is still such deep oppression and exclusion that we haven’t gotten a seat at the table, we haven’t gotten to the places where decisions are being made around inclusion and equity,” says Bonnielin Swenor, director of the Johns Hopkins Disability Health Research Center, who has frequently collaborated with Meeks on her research.
Swenor has low vision and says she joined the disability community in her 20s, and Meeks found out she has an autoimmune disease as an adult after focusing her career on people with disabilities, so both women have been patients in situations where other medical professionals didn’t understand their experiences.
They claim they have more data. There’s little data on the prevalence of people with disabilities among other health professions such as nurses, pharmacists, and dentists, for example. And data about medical students’ and doctors’ experiences during the pandemic is still being collected. After seeing the treatment of people with disabilities during the COVID-19 epidemic, Democratic Senator Tammy Duckworth, Illinois, recently asked the Government Accountability Office for permission to examine health care accessibility for Americans with disabilities. This includes examining the number of people with disabilities in the healthcare workforce, and the training that doctors get about caring for these patients.
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Addams says that medical schools now focus on treating mental health problems partly because of the strain experienced by healthcare providers during the pandemic. The AAMC worked closely with Meeks to conduct her research, and encourages members to make more efforts to support students with disabilities.
Stanford University clinical professor of radiology Dr. Peter Poullos became paralysed in a bike accident in 2003. He co-hosts DocsWithDisabilities and says the aim of this new group is to provide better health care for all people. Through a Stanford disability inclusion and equity group, he has witnessed this success and hopes that other institutions and hospitals will follow his lead.
“We’re trying to envision a future that is built with the idea that people with disabilities are here,” he says. “We should just assume that they are present and include them in the planning and the construction of a system where that doesn’t look at them as a problem, but as an opportunity.”
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