Ableism in cancer care a prevalent, often overlooked health disparity

In In The News by Barbara Jacoby

By: Jennifer Byrne
By: Cheri Blauwet, MD
As the broader health care field strives to identify and address health care disparities, a commentary published in The Lancet Oncology underscored the importance of eliminating ableism from cancer care.

“For many years, people working in cancer care who have knowledge of disability-competent care and concepts of ableism have been calling out the fact that some of the tools used in cancer care have some ableism problems baked in,” Cheri Blauwet, MD, associate professor of physical medicine and rehabilitation at Harvard Medical School, founding director of Kelley Adaptive Sports Research Institute and BWH distinguished chair in physical medicine and rehabilitation at Brigham and Women’s Hospital, told Healio. “We felt it would be a good time to elevate this issue and make people more aware of it.”

Healio spoke with Blauwet — a wheelchair user and former paralympic athlete — about the unintentional biases that fuel ableism, the ways in which ableism manifests in cancer care, and how oncologists can work to eliminate ableism from their patient interactions.

Healio: What motivated you to write this paper?

Blauwet: Ableism is present across all of health care, but there are specific examples that make it more visible and easier to identify. Cancer care is one of those examples. Treatment plans often are developed based on preexisting health conditions and overall performance. Also, as a wheelchair user myself, I have some lived experience with having a visible disability. I’ve been on both sides of the fence as a physician and patient, and I have experienced ableism. Frankly, if you are a person with a visible disability and you are receiving health care, you’ll see it all the time. It’s a very prevalent problem in health care.

Healio: What form does ableism most frequently take in cancer care?

Blauwet: It shows up most frequently in terms of the unintentional biases that many of us have toward disability in general. Ableism is another “-ism,” like racism and ageism. These “-isms” all come with unintentional biases that we’ve developed because of the context and environment in which we grew up.

So, for decades — especially before the Americans with Disabilities Act was passed — there were biased perceptions across society about people with disabilities. There were inaccurate perceptions that people with disabilities have an inherently lower quality of life, are less capable of setting and reaching goals in life, and are less able to participate in society. That was because for decades, people with disabilities didn’t participate in society because of our inaccessible environment.

These biases — most of them unintentional — still hang with us, and they impact clinicians, as well. Studies have showed clinicians, if asked about their perceptions of people with disabilities in an anonymous way, continue to have these biases. These biases impact every tiny decision and interaction we have with our patients, how we relate to them and the inherent judgements we place on people.

If we use some performance scales in the way they were designed to be used, this can very easily lead to differences in treatment based simply on the fact someone is a wheelchair user. I see my wheelchair more as a tool for mobility and liberation, not as a limitation. I’m an otherwise healthy adult — I work out, I eat well. Yet, if I developed breast cancer or colon cancer, I might receive a different treatment plan than someone who walks but is unfit. That is a clear example of ableism.

Healio: Your paper cites a survey of physicians that showed only 40.7% felt “very confident” providing equitable care to people with disabilities. Are physicians hesitant or afraid to treat patients with disabilities?

Blauwet: I think it’s mixed. It’s only over the last few years that we have started to integrate disability-competent care into curriculums and start to teach people how to provide care to patients with disabilities in a culturally competent way. So, I do think physicians — especially those of older generations — might have some fear because they were never really trained how to relate to someone who has a long-term disability, or to understand the nuances of treating these patients. It’s not necessarily because people were stubborn or belligerent — it’s because that wasn’t covered in their training.

Even once we started to integrate more culturally competent care paradigms into medical school training, disability always was left out. There was plenty of focus on how to provide competent care for people of different racial or ethnic backgrounds, or individuals who are non-English speakers. Disability wasn’t integrated into that type of curriculum until more recently. It’s only been within the past 5 years or so that we started to make this a part of our training programs. Because of that, we have wide swaths of physicians for whom this is just a concept. For that reason, I think a lot of physicians doubt their abilities in that space.

Healio: Is there a need to update performance status scales to better represent patients with disabilities?

Blauwet: The reality is, these scales are old, and they don’t really reflect modern concepts around disability. I do think it’s time we look at them and do a critical evaluation of whether they need to evolve to reflect our current state and society, where there are many otherwise healthy people with disabilities moving around the world, working, functioning and raising families.

The NIH recently issued a call for research proposals to focus on studies that look at the impact of ableism. We need to be more focused on catalyzing discussions and research that helps us reframe some of these tools we use that we know are inherently problematic and biased. We see the same discussion happening as it relates to racial disparities in clinical care. For example, the scales or assessments of renal function used to have different thresholds and cutoffs for Black patients, but we have research that shows that never should have been the case. Similarly, we have to look critically at some of these tools we use to understand and call out the biases that are baked into these tools and then work with the oncology community to redefine them.