More than 82% of American doctors say they believe patients with significant disabilities have a worse quality of life than people who don’t have disabilities, according to a new study. Those negative perceptions can have big impacts on the quality of care patients with disabilities receive.
Researchers at Harvard Medical School and Massachusetts General Hospital found that negative perceptions of patients with disabilities are widespread among physicians – to a degree they say is “disturbing.”
Just 56.5% of doctors strongly agreed that they welcomed patients with disabilities into their practices, and only 40.7% of doctors surveyed reported feeling very confident about their ability to provide the same quality of care to patients with disabilities, according to the study published in the journal Health Affairs.
“You would think that doctors should be very confident in their ability to provide equal quality care to all the patients that they agree to see, so that’s a troubling finding,” said lead study author Dr. Lisa Iezzoni, a professor of medicine at Harvard Medical School.
Assumptions lead to worse care
Negative physician attitudes lead to health disparities and dangerous implications for the more than 61 million Americans who have disabilities, Iezzoni said.
For instance, many physicians assume that patients with disabilities are not sexually active, and therefore do not provide them with information about contraception, sexually transmitted infections or testing for cancers associated with sexual activity.
Many surgeons also presume women with disabilities who are diagnosed with breast cancer prefer mastectomies to breast-conserving surgery, under the false assumption that these patients don’t care about their physical appearance, the researchers wrote.
If physicians assume a patient has a poor quality of life, then they are also less likely to talk to them about quitting smoking or adopting other healthy lifestyle habits, Iezzoni said.
It can impact Covid care
The Covid-19 pandemic has further highlighted the need for improvements and “has exposed long-standing aspects of US health care that severely disadvantage people with disability,” according to the researchers.
The impacts of doctor perceptions on Covid-19 care have “certainly been the concern among people in the disability community,” Iezzoni said.
“This worry prompted the DHHS (Department of Health and Human Services) Office (for Civil) Rights last March to issue a directive saying that Covid treatment decisions could not be based on presumptions about quality of life.”
Doctors need to recognize their biases
The first step is for doctors to recognize that they have biases.
“I think that if physicians simply recognize they may have these biases, they need to just ask what their patients’ preferences are and what their patients’ views are – and not make assumptions,” said Iezzoni, who considers herself part of the disability community as a wheelchair user. “Virtually everybody I know with a disability thinks that their doctors just don’t understand what their lives are like.”
That sentiment is echoed by disability advocates, who say that many people – doctors included – have lots of fears, stereotypes and misconceptions about the lives of those with disabilities.
“I think it’s been an out of sight, out of mind situation,” said Carol Glazer, president of the National Organization on Disability. “It’s no different for doctors than it is for anybody else who has limited experience with a certain group of people and doesn’t understand their daily lives, their wants, their needs, and their abilities.”
Although physicians and other health care workers perceive that people with disabilities have an unsatisfying quality of life, that’s a paradox, according to the Massachusetts General Hospital study and Glazer’s group. A majority of those patients – about 54% – self-report having an “excellent or good quality of life,” according to the study.
“Disability does not mean inability,” added Glazer, who was not affiliated with the study. “Disability is a normal part of the human condition. And it’s something any of us can acquire at any time.”
Many people will have a disability
In fact, one out of every five people has a disability and more than 80% of those disabilities are acquired later in life, according to the National Organization on Disability.
The head of Inspire, a company that hosts support groups for more than 2 million patients and caregivers dealing with hundreds of different health conditions, told CNN that many members discuss experiencing skepticism or lack of understanding from medical professionals.
“There’s a lot of concern – patients describe not being believed by their doctor. Or they’re getting a certain look from their doctor because they have a disability or that they’re treated differently,” Inspire CEO Brian Loew said.
Loew said support groups can be incredibly useful for helping patients feel like they are not alone, as well as for practical things like getting advice about how to talk to doctors or making a game plan to get the most out of rushed medical appointments.
“It’s really upsetting reading how much patients suffer from some interactions with their doctors,” Loew said. “And I’m starting to feel that those (interactions) are maybe as important as treating the disease or disability itself.”
The Massachusetts General Hospital study also found that medical school curricula generally don’t include disability topics. The researchers call for all levels of medical education to include more training about disability, including disability cultural competence and etiquette.
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“All physicians and health care providers can expect to see increasing volumes of patients with disability,” wrote the researchers, noting that the number of Americans with a disability is growing. “Why should people with disability, unlike other patients, be compelled to justify to their physicians how they value their lives?”