By Lorie Martin and Emma Opthof, Center for Health Care Strategies
The Americans with Disabilities Act of 1990 requires that people with disability receive access to health care equal to the nondisabled population. But 30 years later, how are people with disabilities faring in their interactions with health care providers? In a first-of-its-kind study, a team of researchers at Massachusetts General Hospital/Harvard Medical School, University of Colorado, and University of Massachusetts-Boston surveyed over 700 practicing physicians nationwide about their attitudes toward patients with disability. The study found that 82 percent of the physicians surveyed believe people with significant disability have worse quality of life than those without disability. Only 56 percent of physicians surveyed strongly agreed that they would welcome patients with disability into their practices and just 40 percent were very confident about their ability to provide the same quality care for individuals with disability that they provide for people without disability.
The Better Care Playbook recently met with the study's lead author, Lisa Iezzoni, MD, MSc, professor of medicine at Harvard Medical School who is based at the Health Policy Research Center-Mongan Institute at Massachusetts General Hospital, to discuss the survey findings and implications on the health care of people with disability. Dr. Iezzoni, who was diagnosed with multiple sclerosis during her first year in medical school in 1980, brings a unique personal and professional perspective to this issue.
Q: What did you find most surprising from this research?
A: I was pretty sure that we would find that physicians think that people with disability have worse quality of life than non-disabled people, I just didn't expect it to be over 80 percent. As you know, there's a social desirability bias with surveys and we offered “the same” as a response category, so they could have said, people with disability have the same quality of life as other people. We also offered “better”, but only a teeny tiny sliver said better. I think the physicians responding to this survey had no social desirability bias in their responses because they responded honestly. They are very confident in their responses and do not believe it would be considered wrong to think people with disability have worse quality of life. However, that contradicts interviews of people with disability. I don't mean to imply that disability cannot be a very difficult thing to live with, but the vast majority of us, especially those who've lived with disabilities for a long time, have figured out how to enjoy our lives and don’t feel our quality of life is terrible.
It was also surprising to see that only about 41 percent said that they had strong confidence in caring for people with disability, and 56 percent of them strongly agreed that they would welcome people with disability into their practice. The fact that those two findings are so highly associated is not surprising, but it is troubling for me to go to a new doctor and realize that I've got kind of a coin toss whether they're going to be welcoming me into their practice or providing quality care.
Q: Thirty years after its enactment, what do the study results reveal in the context of the American with Disabilities Act of 1990?
A: I’ve repeatedly been asked by people about why you can go to a movie theater or ball stadium and there are the accessible seats, but you don't necessarily have an accessible examining table or weight scale when you go to your primary care doctor. The fact that most health care facilities are accessible in terms of ramps and doors and bathrooms but are not physically accessible in terms of their medical diagnostic equipment just shows that this has not been top of mind in the medical community. My theory is that in medical settings, there's just the sense that if a patient needs to be moved, the health professionals will move you. Yet people with disability want control over their own bodies. If they are able, they want the agency to be able to move where they want to move when they want to move, how they want to move and don't want other people moving them. It's an unfortunate presumption because we know that there are career-ending injuries for nurses in practice incurred in transferring patients. It’s just not a good situation that here we are — almost 31 years later — without accessibility throughout the health care delivery system.
Q: Why is physician perception regarding quality of life for people with disability so important?
A: Everybody wants to feel respected, and nobody wants to feel pitied. I think this perception would color — even though it may be implicitly — the physician’s way of communicating with you and their approach to treating you. There's going to be an element of knowledge superiority that the physician feels that they know something about your health or physical condition and thus presume that your quality of life isn't as good as it could be. If physicians devalue your life, they might not think about things like wellness, exercise, and conversations about sexual activity and the need for contraception. Our previous research has shown that physicians are less likely to talk to women with major mobility difficulties in their reproductive years about contraception, or don’t conduct pap tests, presuming that these women are not sexually active and at risk of unintended pregnancy or HPV and cervical cancer. Another study I've done is with women with major mobility disability who have early-stage breast cancer, for whom a mastectomy versus a lumpectomy are two options, so long as the lumpectomy is followed by radiation therapy. The women I interviewed reported that their physicians were a lot more likely to recommend mastectomy and not lumpectomy, presuming that they don't care about their appearance.
Q: What are the ramifications of the study results in the COVID-19 environment for people with disability?
A: At the end of March 2020, the Office of Civil Rights in the Department of Health and Human Services had to make a statement that essentially said you cannot use your presumption about a person’s quality of life to make a decision about whether you should give somebody a treatment that is in scarce supply, like an ICU bed or ventilator. There were some very high-profile cases related to this. There was a case in Texas of a Black man named Michael Hickson — so an intersectional issue there as well — who had a heart attack years ago and had brain injury from that, but he survived and was still a very cheerful person. He had children and a wife who loved him, he was living in their household, and he was still able to interact and enjoy things about life and spend evenings with his kids. He got COVID and a friend of his wife took a video of the doctor telling her that they were not going to treat her husband because the doctor thought he had bad quality of life.
Q: How can health care systems and providers respond to the study results?
A: Well, I think the first thing is just simply to be aware that these results exist. I haven't gotten any pushback from physicians about these findings, and there have been a number of people from the medical community who've asked me what we can do to fix this. There is an implicit association test for bias about disability. The evidence about whether that kind of implicit association testing really changes the behavior of providers is not clear, but it's at least something that people could do for some personal insights.
Health care systems and providers need to also understand what the law requires them to do — and that is to provide equal quality of care for people with disability. If they’re going to talk to their patients about wellness, exercise, reproductive health, or smoking, they should also talk to their patients with a disability about those things, even if you might not believe that somebody might be sexually active or interested in those things.
And then the next thing is that there is lot of evidence about how physicians cut patients off after less than 30 seconds— there are studies that have timed this, and it's kind of appalling. Talk to your patients and listen to them, ask them what they want, what they value in their lives, what are the most troubling things to them about their daily activities, and how you can work together to address these things. The problem is that physicians only see people with disability when they're feeling sick or poorly, so they have a very narrow view of what goes on. There have been some studies that suggest the more time that physicians spend hanging out with and getting to know people with disability, the more comfortable they are around people with disability and the better feelings they have about their quality of life. I also think that medical education obviously can be improved, but that's a longer-term process. However, we can start thinking about continuing medical education (CME) and including sessions about this. Some states require CME credit for risk management or patient safety, so this could be included in one of those topics.
Q: Is there anything that we haven't touched on that you feel is an important takeaway?
A: This has real impact on people's lives and can have serious consequences. Opportunities for maximizing quality of life can get missed if doctors don't believe people can live happy, good quality lives despite their disability.