People with disabilities often spend a lot of time navigating bias and educating others about their condition. When it comes to cancer, assumptions made by their doctors can undermine their care even before it starts.
The potential for pitfalls is vast. Clinicians might assume a woman who uses a wheelchair isn’t sexually active so doesn’t need to be tested for HPV, the virus that causes cervical cancer. They might order a mammogram to screen for breast cancer without considering the fact that the test requires someone who uses a wheelchair to stand. Imaging scans may be unworkable for someone unable to hold their limbs still because of cerebral palsy.
Once cancer is diagnosed, perhaps at a later stage if routine screening is delayed or overlooked, a patient who uses a wheelchair may confront another barrier: Outdated decision trees designed for treatment regimens that depend on a patient’s being “ambulatory” — able to walk — as a benchmark for tolerating chemotherapy.
Three doctors, two of whom use wheelchairs, called out this discrimination toward people with disabilities as “ableism” in a recent Lancet Oncology commentary.
“There’s ableist language and assumptions about people who use a wheelchair, for example, not being strong enough when in fact, some people who use wheelchairs are the strongest people around,” co-author Sean Smith, the medical director of Michigan Medicine’s Cancer Rehabilitation program, told STAT. “There needs to be a better way to assess these patients consistently … a way that is patient-centered and ensures that people who could benefit from and who want treatment by chemotherapy can get it.”
When a patient is diagnosed with cancer and an aggressive treatment plan may be required, oncologists use scales like the Karnofsky Performance Scale and the Eastern Cooperative Oncology Group Performance Status Scale to determine a patient’s physiologic reserves and ability to tolerate that treatment. The treatment plan that’s chosen for a frail 91-year-old may — and likely should — look very different than the treatment chosen for an otherwise healthy 21-year-old patient. The challenge arises when someone who’s an amputee or uses a wheelchair is seen as less likely to withstand or benefit from treatment.
The authors of the Lancet commentary highlighted what they view as problematic factors that these scales use to determine whether patients are candidates for more aggressive treatments, such as “requires occasional assistance,” “disabled,” and “confined to bed or chair more than 50% of waking hours.”
For example, a patient just diagnosed with cancer might have the options of doing radiation plus chemo and surgery, or just chemo plus surgery and not radiation. The decision to add radiation, which may make it a more aggressive treatment, is based on someone’s functional performance predicted by the scales.
“To make an assumption that a wheelchair user must inherently be someone with a significant burden of chronic disease is a very ableist assumption,” said commentary co-author Cheri Blauwet, chief medical officer at Spaulding Rehabilitation Hospital and an associate professor in physical medicine and rehabilitation at Harvard Medical School. “The bottom line is that these performance skills were developed many decades ago, in a different era, in a society where there weren’t a lot of people with physical disabilities who were out there in the world, high-functioning and participating in society,” she said. “And the world has changed.”
It’s perhaps an understatement to say she knows whereof she speaks. A Paralympic gold medalist and two-time winner of both the Boston Marathon and the New York City Marathon in wheelchair racing, Blauwet was just named board chair for the Boston Athletic Association, whose signature event is the Boston Marathon but whose mission, she points out, is enhancing health.
People with physical mobility deficits get the sense that their cancer might have been treated differently because of their preexisting disability, the authors note, citing previous research. Focusing just on visible disabilities in their opinion piece, Blauwet, Smith, and their co-author Thomas Wells could go only so far. Disparities in cancer care aren’t that well documented and people with disabilities are virtually invisible in the vast majority of biomedical research.
Starting with cancer screening, “you have to think of designing around the person, listening to the person, and seeing what their problems are and what they can do rather than making assumptions,” Wells said. A medical oncologist at Weston General Hospital in Weston-super-Mare, England, he has been using a wheelchair since an accident in 1992 left him paralyzed while he was a medical student.
While there isn’t much data on disability and cancer care, a sobering study published last year in Health Affairs did report on the high percentage of physicians (82%) who believe having a disability is incompatible with a high quality of life. Fewer than half (42%) of doctors felt strongly confident that they could provide equal quality of care to patients with a disability.
”These attitudes all together just kind of add up to people with disabilities being disadvantaged when it comes to cancer detection, treatment, and outcomes,” said Lisa Iezzoni, a research physician at Massachusetts General Hospital, a professor of medicine at Harvard Medical School, and co-author of the Health Affairs study.
In the course of her research on physician attitudes toward disability, Iezzoni has collected some horrifying stories about the price people with disabilities pay for lack of understanding in medicine, starting with her own story. She was diagnosed with multiple sclerosis in her first semester of medical school, then blocked from residency after earning her M.D. in 1984, when she was told there were more than enough able-bodied graduates to become trainees. Forced to shift her focus from practice to research, she has studied disparities with a particular emphasis on primary care, cancer care, and reproductive health.
The case studies in cancer she shares are harrowing. There was the man whose gastrointestinal cancer was dismissed and misdiagnosed as a complication of limited mobility until a 15-pound tumor was removed — an example of “diagnostic overshadowing,” the term for blaming all ills on the patient’s preexisting condition.
Then there was the woman with cerebral palsy whose arms were masking-taped to a table during eight weeks of radiology treatments. And the wheelchair user with a rotator cuff injury to her shoulder after breast cancer treatment, who was told “just don’t use your arm.”
Thinking about cancer treatments for people with disabilities needs to take into account how they live their lives, Iezzoni said. Wheelchair users who have early-stage breast cancer may worry if having a mastectomy, rather than a lumpectomy, will mean developing lymphedema, long-term swelling in the arm that could compromise their ability to self-propel a wheelchair.
But the dearth of scientific literature on people with both disabilities and cancer is compounded by physicians’ implicit bias. “One of the problems with doctors is that doctors don’t know what they don’t know,” Iezzoni said.
Lisa Meeks, an associate professor of family medicine and learning health sciences at the University of Michigan, thinks medical education holds the key to improving that picture.
“Weaving disability into every part of the curriculum should be what’s done, because you will see it across every specialty. You could take existing cases and add an element of disability. You could change the way we teach about disability and change the offensive language and change the narrative,” she said. “The biggest accommodation is attitude.”
Meeks has hope for students with disabilities now coming through medical school and residency, compared to when she was a medical student with a disability. “We call them the post-ADA cohort,” she said, referring to the Americans with Disabilities Act signed into law in 1990. “Many of them were diagnosed early in their lives. They’ve always had accommodations. They know their rights. This group is also a very socially forward, inclusive generation.”
She, too, bemoaned the lack of research including people with disabilities, and not just when it comes to guidelines for chemo.
“I promise you, I promise you, promise you, promise you that the research done in large clinical trials doesn’t include a lot of people with disabilities,” Meeks said. “The protocol is on its face not designed for disabled people, so right away you have a disconnect between the physician and the patient.”
Blauwet sounded a similar note.
“There isn’t a lot of research that proves that there’s treatment disparities. But we have a strong suspicion that there is and patients tell us that there is,” Blauwet said. “We need to do qualitative patient-centric research. … Thankfully, because of that, the NIH has put out a new call for proposals for exactly that type of research.”
Smith, Blauwet, and Wells compare the breadth of ableism to other forms of discrimination, like racism.
“Name any facet of health care and you could describe a way that racism could impact patients, whether it’s primary care, surgery, oncology care, sports performance,” Blauwet said. “Ableism impacts all of health care, just like racism does.”