Ben Salentine, associate director of managed care health sciences at the University of Illinois Hospital and Health Sciences System, hasn’t been weighed in more than a decade. His doctors “just sort of guess,” his weight, he says, because they don’t have wheelchair-accessible scales.
He is far from alone. Many people with disabilities describe difficulties in finding doctors willing to care for them. “You would assume that medical spaces would be the most accessible places, and they are not,” said Angel Miles, rehabilitation program specialist at the Administration for Community Living, which is part of the US Department of Health and of Social Services.
Not only do clinics often lack the necessary equipment, such as scales that can accommodate people in wheelchairs, but at least some physicians actively avoid patients with disabilities, using excuses such as “I’m not taking new patients” or “You need a specialist,” according to an article in the October 2022 issue of Health Affairs.
The work, which analyzed focus group discussions with 22 doctors, adds context to a larger study published in February 2021, also in Health Affairs, which showed that only 56% of doctors strongly welcomed patients with disabilities into their practice. Less than half were confident or very confident that they could provide the same quality of care to people with disabilities as to other patients. The studies add to a larger body of research suggesting that patients with various conditions that doctors may deem more difficult to treat often struggle to find quality care. The Americans with Disabilities Act of 1990, or ADA, theoretically protects one in four disabled adults in the United States from discrimination in public and private medical practice, but enforcement is a challenge.
Laura VanPuymbrouck, assistant professor in the Department of Occupational Therapy at Rush University, said the 2021 survey was “groundbreaking. It’s the crack that broke the dam a bit. Now, researchers hope that medical schools, payers and the group that accredits hospitals, the Joint Commission, will push health care providers to seek more equitable care.
Information about health care for people with disabilities is limited, in part because of the paucity of data, according to Tara Lagu, co-author of the 2021 and 2022 papers and director of the Center for Health Services & Outcomes at the Institute of Health. public and medical. Research at the Feinberg School of Medicine at Northwestern University. The few studies that have been done suggest that people with disabilities receive less preventive care and have poorer outcomes than their non-disabled counterparts.
About ten years ago, Lagu discharged a partially paralyzed patient who used a wheelchair. The patient’s discharge notes repeatedly recommended an appointment with a specialist, but this did not happen. Lagu asked why. Eventually, the patient’s adult daughter told Lagu that she had been unable to find a specialist who would see a patient in a wheelchair. In disbelief, Lagu started making calls. “I couldn’t find this kind of doctor within 100 miles of her house who would see her unless she came by ambulance and was transferred to an exam table by EMS,” he said. she said, “which would have cost her pocket family over $1,000.
In recent years, studies have shown that even when patients with disabilities can see doctors, their doctors’ biases towards conditions such as obesity, intellectual disabilities and substance use disorders can have profound impact on the care they receive. Doctors may assume a person’s symptoms are caused by obesity and tell them to lose weight before considering testing.
For one patient, that meant a seriously delayed diagnosis of lung cancer. Patients with reduced mobility or intellectual difficulties are assumed to be single, so their providers ignore any discussion of sexual health. People in wheelchairs may not weigh themselves, even if they are pregnant, a time when monitoring their weight is particularly important because gaining too little or too much weight can expose the baby to developmental delays or the mother to complications during childbirth. .
These issues are well known to Lisa Iezzoni, a health policy researcher at Massachusetts General Hospital and a professor of medicine at Harvard Medical School. Over the past 25 years, Iezzoni has interviewed about 300 people with disabilities as part of her research on their health care experiences and outcomes, and she’s found that “every person with a disability tells me that their doctor doesn’t follow it, has incorrect assumptions about them, or doesn’t know how to provide care. In 2016, she decided it was time to talk to the doctors. Once the NIH funded the work, she and Lagu recruited the 714 doctors who responded to the survey for the work published in 2021 in Health Affairs.
Not only did many physicians report feeling unable to properly care for people with disabilities, but the vast majority mistakenly believed that these patients had a lower quality of life, which could lead to fewer treatment options being offered.
During this study, Iezzoni’s team recorded three focus group discussions with 22 anonymous physicians. Although open discussions were not included in the initial post, Lagu said she was “completely shocked” by some of the comments. While some physicians in the focus groups welcomed the idea of additional training to help them better care for patients with disabilities, others said they were overworked and the typical 15 minutes allotted for office visits insufficient to provide patients with appropriate care. Still others “began to describe that they thought these patients were a burden and that they would relieve patients with disabilities from their practice,” she said. “We had to write it.”
The American Medical Association, which is the largest professional organization representing physicians, declined a request for an interview from Undark and would not comment on the two health affairs studies. Asked about the organization’s policies on caring for patients with disabilities, a representative pointed to WADA’s strategic plan, which includes a commitment to equity.