For a quarter of a century, Dr. Lisa Iezzoni has heard about substandard health care for people with disabilities. There were medical offices that were not open. They were not treated with respect by the doctors.
There were differences everywhere I looked. She had experience with multiplesclerosis and used a wheelchair, so what patients told her was no surprise.
It was time to move forward.
Iezzoni thought he needed to talk to doctors. When a patient with a disability shows up in a doctor's office, she wants to ask them what they think.
A group of doctors, a mix of primary care physicians and specialists recruited from across the United States, were put into three focus groups on video conferences. The groups of eight to 10 doctors were protected from the public. As the sessions that Dr. Iezzoni moderated wore on, they began to speak more honestly. They couldn't see that the doctor was in a wheelchair.
The study was published in the journal Health Affairs earlier this month and stunned one of the study's authors.
She said she almost couldn't believe it.
Doctors had a lot to say about people in wheelchairs. Patients were told to go to a supermarket, a grain elevator, a cattle processing plant or a zoo if they wanted to be weighed because the scales in the doctor's office couldn't accommodate wheelchairs.
He had to give the patient an appointment because he didn't think he could legally refuse to see a patient. He said, "You have to come up with a solution that this is a small facility, we are not doing justice to you, it is better you would be taken care of in a special facility"
The doctors said that they were eager to get rid of these patients because they were not getting enough time with individual patients.
Doctors said seeing patients at a 15-minute clip is ridiculous. It is unacceptable for someone to say that patients with mild to moderate disability will still be seen in those time frames.
One doctor said he lost $30 per visit because he hired a sign language interpreter for a deafness patient. The specialist in the focus group said that the disabled patients took too much time.
The focus group members were self-selected from verified users of a social network for physicians. Doctors from a variety of fields were included in the study, according to the study's authors.
She decided on anonymity for the doctors because she thought it would be difficult to get them to admit that they treat patients with disabilities differently. She said they don't want to be seen as bad people.
The strategies doctors described to limit their care or get rid of them were all true according to people with disabilities.
A man who lives in Green Bay, Wis., has a rare bone disorder and has suffered a lot. He mentioned he used a wheelchair when he called the doctor to see him. His appointment was canceled suddenly. There was a mistake when he spoke to the person at the doctor's office. They would return the call. They didn't.
August Rocha is a person with a genetic disorder that causes chronic pain. He is using a wheelchair and a walker. He claims to have heard it all.
There will be excuses not to see you. They will tell you that the machinery isn't good for you. Maybe you shouldn't go. Doctors will not be able to examine him because they cannot get him onto an exam table. Perhaps you should go somewhere else.
He doesn't complain because he wants the doctor to be with him. He doesn't want the doctor to spread word that he is difficult to deal with.
There are no easy solutions. The National Council on Disability wants to include disability in the data health care systems collect about their patients. It's impossible to track differences in treatment and outcomes if you don't do that.
Data on racial disparity is collected by health systems.
Doctors need to be aware that a patient with a disability will be in their office. The doctor's office doesn't convey the message to the provider when a patient calls and explains their disability The doctor doesn't know the patient is coming until they get there.
accessibility is a priority for patients. Equipment like exam tables with scales that can weigh everyone, as well as communication accommodations for those with hearing, vision or speech impairments, are included. Many patients want doctors to know more about their conditions and how they affect their daily lives.
There is more to come.
The culture of medicine needs to be changed when it comes to discrimination around disability.
She contributed reporting.
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