“I Am Not The Doctor For You” is the title of a disturbing new study published earlier this month in the journal Health Affairs. It reports that a number of doctors acknowledge being uncomfortable with treating people, like me, who have a disability.
The study was conceived of by Lisa Iezzoni, MD, a professor of medicine at Harvard University. Over years of talking with people with disabilities, she noticed a big difference in the quality of treatment they reported receiving from doctors, compared with able-bodied people.
“Everywhere I looked, there were disparities,” Iezzoni recently told The New York Times.
So she gathered some primary care physicians and specialists from the U.S. in video focus groups and asked them how they felt when treating people with disabilities. The doctors couldn’t see that Iezzoni, who has multiple sclerosis, was sitting in a wheelchair. Some of their answers to her questions were eye-openers.
A lack of knowledge
The study notes that many of the doctors “expressed explicit bias toward people with disabilities and described strategies for discharging them from their practices.” One seemed unconcerned about accessibility to his office, stating, “I know for a fact our building is not accessible.”
Several complained that it takes too long to interact with a disabled patient, when they can only spare 15 minutes per appointment. But, of course, brief doctor appointments and difficulty getting one are problems for able-bodied patients, too.
Many doctors worried about lacking knowledge about caring for people with disabilities, particularly when doing things like transferring a patient onto an exam table or a scale.
Study even quotes one doctor who believed the Americans With Disabilities Act (ADA) does more harm than good. “I truthfully think the [ADA] makes the disabled person more of a target and doesn’t help them but hurts them. Because a lot of us, me personally, are afraid to treat them. … [S]o I look at it as not [a] helpful act, but I look at it as a hurtful act,” the doctor said.
No surprise to some
In the Times story, reporter Gina Kolata wrote that patients with disabilities she spoke with confirmed problems similar to those mentioned in the study. One patient, who has a bone disorder called osteogenesis imperfecta, said an appointment was canceled after he told staff at the doctor’s office that he uses a wheelchair.
Another person, who uses a walker and a wheelchair, told Kolata that some doctors “will find every excuse not to see you. They will say, ‘Our machinery isn’t good enough for you. Maybe you shouldn’t come in.’” One physician, who worried about transferring him to an exam table, told him, “I really don’t know what to do with you. Maybe you should go elsewhere.”
What to do?
The study suggests that accommodations in healthcare settings for people with disabilities frequently are not provided. Patients with disabilities often receive substandard care, and in some cases, they are refused care.
The researchers suggest mandated documentation of disability status and accommodation needs by clinicians and practices so that they can better prepare for that patient. They also recommend improvements in medical training abut how to care for those of us with a disability.
The study’s authors caution, however, that these steps may not be sufficient “to ensure equal quality and accessibility of care for people with disabilities.” Yet, other than suggesting that those in healthcare use “all available tools (education, publicity, lawsuits, and policy levers)” to address these problems, the authors make no specific suggestions.
I like to think, despite what this study reports, that most physicians are not like this. But even a few who think this way are too many.
Has this ever happened to you? Do you have any suggestions about what can be done about the problem?
(A version of this post first appeared as my column on the MS News Today website.)
(Featured mage by Sabine GENET from Pixabay.)
