Most doctors hold distorted view of disabled life, American survey finds
By Louise Kinross
How would you feel knowing there's an 82 per cent chance that your doctor thinks you're less happy or satisfied with your life than other people? Or a 60 per cent chance that your doctor doesn't feel well equipped to care for you in the way he or she provides care to other patients?
A new study in Health Affairs found 82.4 per cent of 714 doctors across the United States don't think it's possible to live well with a significant disability, and only 41 per cent feel confident in their ability to provide the same care to a patient with a disability that they give other patients. Female doctors working at academic medical centres were most likely to welcome patients with disabilities. Doctors in seven specialties treating adults, including family medicine and obstetrics-gynecology, filled out the survey.
"We are unaware of prior studies in which physicians expressed this level of bias toward populations that also experience disparities in care (for example, racial or ethnic minorities or people who identify as lesbian, gay, bi-sexual, or transgender)," the scientists write. BLOOM interviewed lead researcher Dr. Lisa I. Iezzoni, a professor of medicine and researcher at Harvard Medical School and Massachusetts General Hospital.
BLOOM: Is this the first study about doctor's attitudes toward caring for people with disabilities?
Dr. Lisa I. Iezzoni: We believe that it is. There have been other studies, but they looked regionally within a state or a local area. From looking at the literature, this is the first national survey.
BLOOM: What findings cause the greatest concern?
Dr. Lisa I. Iezzoni: There were three particularly noteworthy findings. The first is that 82.4 per cent reported that quality of life for people with significant disability is worse than for other people, and that was very concerning, because those attitudes could very much affect the willingness of physicians to offer certain types of care to people with disabilities.
BLOOM: Can you give an example?
Dr. Lisa I. Iezzoni: In the United States, this was especially a concern in the disability community in the early phases of COVID, when resources were scarce and there were concerns about the adequacy of ventilator supports and ICU beds. People with disabilities were afraid that if they showed up at the door and there weren't enough ventilators or ICU beds, they would be denied care.
Only 40.7 per cent felt very confident in their ability to provide equal quality of care—that's a little worrisome. That was the second noteworthy finding. You would expect your physician to feel very confident that they can provide equal quality of care.
The third finding that was noteworthy to me was that 56.5 per cent of doctors strongly welcome people with disability into their practices. I'm a person with a disability, and I want to feel that my doctor strongly welcomes me into his or her practice. The notion that 40 per cent of physicians do not strongly welcome patients with disabilities is worrisome.
BLOOM: Why do so few doctors in the adult sector feel equipped to provide quality care to disabled people?
Dr. Lisa I. Iezzoni: We don’t know exactly, but in doing analyses for other papers we're working on, there was a strong relationship analytically between those who feel they're not confident in being able to provide the same quality of care, and those reporting that lack of training is a moderate to significant barrier to caring for people with disabilities.
Our survey was what we describe as shallow but not deep. This is the first national survey about the experiences of physicians and their perceptions of caring for people with disabilities, so we wanted to cover a lot of topics. We wanted to cover everything from 'Do you have an accessible weight scale?' to quality of life. Because we covered a lot of topics, we weren't able to go deep, but we'd like to do that in future papers and research.
BLOOM: Only half of your participants strongly agreed that they welcome people with disabilities. Can a doctor refuse care to a patient with a disability?
Dr. Lisa I. Iezzoni: Our study did not go out and assess that. There have been studies that have suggested that physicians will turn away patients who cannot independently transfer to the exam table, even though that is illegal in the United States. One of our co-investigators did a secret-shopper study where they called up physician offices around the country and described a patient who wanted to make an appointment, and 22 per cent said no, we can't see that patient because they can't independently transfer. It was obvious, from further questioning, that the physicians did not understand that what they were saying was actually breaking the law.
It might also just mean that they would have patients come to their office, but they’re not too excited to see them there. That will probably, in a very subtle way, be reflected to the person with a disability—that the physician may feel uncomfortable or not be really aware of how to accommodate them.
BLOOM: Given many of the doctors in your study don’t feel equipped to care well for disabled people, isn’t it odd that only 18 per cent strongly agreed that the health system treats these patients unfairly?
Dr. Lisa I. Iezzoni: That's an interesting question, and I've gotten that question from other people. I think it goes hand in hand with physician statements about quality of life of people with disabilities being worse.
If you assume people with disabilities have worse quality of life than other people, then you might not necessarily feel that the type of care they’re getting—even if we know objectively that they're getting disparate care—you might not feel that that’s worse or unfair. You might feel justified by the fact that people with a disability maybe don’t need that quality of care, or wellness care isn’t that important to a person with a disability, because they have a worse quality of life, so they're not concerned about their wellness. Our study did not ask that question.
BLOOM: Are you suggesting that doctors might feel that certain types of care that they would offer an able-bodied person are 'futile' to offer a person with a disability—because they already have a poorer quality of life?
Dr. Lisa I. Iezzoni: Yes, perhaps 'futile' is an apt work—they will not cure people with disability. Another possibility is that this response represents social desirability bias. It is the response they think surveyors would want or expect to hear.
BLOOM: In Canada, senators are debating Bill C-7, which would include disability as a reason for medically assisted suicide when the person doesn’t have a terminal condition. Could doctors’ negative attitudes about disability play into decisions here?
Dr. Lisa I. Iezzoni: I think they absolutely would play into that. They absolutely would. In surveys, there’s something called a positive response bias. People respond to a survey based on how they expect people would want them to respond. And so the fact that 82.4 per cent of physicians said people with significant disability have a worse quality of life, when one of the responses was that they had the 'same' quality of life, suggests that they felt very confident that what they were saying was right. You would have thought if they were following a positive response bias, that they would have said the same. The fact that they said worse suggests to me that they were very sure of their answers. I think what you just said about that initiative in Canada really does raise concern.
BLOOM: Do physicians come out of medical school with a lack of knowledge about people with disabilities, or with a lack of knowledge about disabled people PLUS having absorbed negative attitudes about the value of disabled people?
Dr. Lisa I. Iezzoni: Possibly both—plus physicians are people, too. They reflect general societal attitudes. So to the extent that society stigmatizes people with disability, it is not surprising that physicians might share these attitudes.
BLOOM: We have seen some very disturbing cases in Canada where a person with a disability is unable to get the supports they need to live at home. They're hospitalized, and the only option is to go to a nursing home. And a doctor, with no prompting from the patient, suggests medical assistance in dying.
Dr. Lisa I. Iezzoni: Physicians believe they have a fund of knowledge, but we know they have attitudes from their medical training that are erroneous when it comes to people with disabilities.
We're seeing the same thing in the U.S. that you're seeing. When people with significant disability are talking about wanting to do assisted suicide, or to take their own lives, it's often because they're being forced into nursing homes or institutional settings. They don't have homes with personal care assistants that can support their activities of daily life. It's really not a health issue. It's more a social-support issue.
BLOOM: What are medical schools doing to counter the idea that people with disability have a worse quality of life?
Dr. Lisa I. Iezzoni: Nothing. These findings just came out and I think this is the first time these findings have been reported. This kind of information has been anecdotally known and there have been radio reports by National Public Radio, thanks to our intrepid disability reporter Joe Shapiro at NPR, but this is the first time we have numbers to attach to it. I’m really hoping that some medical educators will see this and begin to say we need to do something about this. A lot of medical training is focused on what are called social determinants of health: race, ethnicity, income, but not disability. I'm really hoping that this will open eyes and show that disability also needs to be included in this.
BLOOM: How did you get interested in this research?
Dr. Lisa I. Iezzoni: I've had multiple sclerosis for 44 years and used a wheelchair since 1988. Once I was long enough into my career that I didn't think I could be fired anymore, I looked around for what would be personally meaningful. More than 20 years ago there wasn’t much research on disability disparity in health care. I started off using some of our federal surveys that include disability to look into disparities in screening for breast and cervical cancer. And I interviewed people with disabilities about their experiences with breast and cervical cancer care. And now I've done this study.