Ableism — or the discrimination favoring able-bodied people — may lead to care rationing and non-standard treatment of patients with cancer who have a disability, highlighting the importance of advocacy on both the patient and clinician fronts, an expert said.
Dr. Cheri A. Blauwet, associate professor of physical medicine and rehabilitation at Harvard Medical School and chief medical officer for Spaulding Rehabilitation Hospital in Boston, and her colleagues recently wrote a comment published in Lancet Oncology on ensuring cancer care equity for patients with physical disabilities.
“We selected this topic because we felt it was important to highlight the overall risk and concern about bias in cancer care towards people with disabilities and the impact of ableism,” Blauwet said in an interview with CURE. “Ableism impacts all aspects of health care. … Some of the examples within the cancer care space are just very prominent, … related to things like the use of the performance scales, which have inherent ableist concerns sort of baked into them, how they’re developed.”
Blauwet spoke with CURE about ableism in cancer care, how it may impact outcomes and advice on how patients can advocate for themselves.
Can you explain what is ableism, as it pertains to cancer care?
So ableism is like any other -ism. I think it’s important to frame it in terms of other aspects of a person’s identity that could raise a risk for them experiencing biases, so things like racism or ageism. And ableism is that same concept but towards people with disability. When a person with a disability is judged on the basis of their disability without understanding the broader context of their life, and people make decisions or assumptions about them because of that disability, and may, in fact, make decisions that actually could disadvantage them in some way, similar to how racism impacts people with diverse racial backgrounds. So as it relates to cancer care, there are, of course, many aspects of the cancer journey where clinicians are making decisions about what to prescribe a patient or what treatment protocol to develop, or what type of rehabilitation they should receive after their treatment. And at all of those steps along the way, there’s always a risk that someone particularly with a visible disability, like a mobility-related disability, or someone, for example, with an intellectual disability, could be subject to that bias and those false assumptions about their capabilities and their function that could then impact their care.
How else may this impact outcomes?
If it impacts their care, it impacts their outcome. One concern we have is that people with disabilities, because of that ableist bias, may receive less aggressive treatment options. So if you have a specific cancer diagnosis, and there’s Treatment Option A and Treatment Option B; A is the more aggressive option, and B is the less aggressive option. And if the clinician recommends option B, the less aggressive option, because they’re making an assumption about the overall level of function or the ability for the individual to tolerate it, but in fact, their function is actually quite high, then they could of course, experience a different outcome based on which of those treatment protocols have been selected.
Why do you think there’s still a lack of awareness about ableism in cancer care? And what needs to be done to increase that awareness?
Well, I think the concepts of ableism are really continuing to evolve. I mean, this has been something that, of course, has been around for decades and centuries, but we’ve only recently begun to really talk about it and really elevate it into more mainstream discussion. And as this discussion across society has become more elevated, and people have become more aware of ableism, although we have a long way to go towards completely dismantling these challenges, it is a good time to continue to enhance that awareness. And clinicians, anyone working with cancer patients understand that bias is problematic in health care and that it can lead to patients having a poor patient experience. It can lead to, as we’ve noticed different treatment plans, different outcomes. And the more people are aware of these potential biases, then that’s the first start. That’s the start and then recognizing those biases and then addressing them. So we really felt like this was a great time to publish this piece in a broadly read journal so that everyone out there that’s reading Lancet Oncology, has it more front of mind that this could be a risk within their clinical environment and when working with their patients.
What advice would you give to patients who have a disability and cancer? How can they advocate for themselves so they get the best care they can receive?
There are a few different aspects of self-advocacy. I think the first is just thinking about the overall structural environment and ensuring that the environment where they’re receiving care is accessible so that they can fully participate. So everything from parking to automatic door openers to ensuring that the clinic exam room has an accessible exam table so that they can actually be examined appropriately, all these things are very important. And I think it’s helpful for patients to understand that these are their rights. And if they’re not seeing this type of structural accessibility within the environment, that they should raise it as a concern and foster a discussion about that.
And then I think as it relates to working with their physician or other clinicians, it’s really important for patients with disabilities to understand that it’s OK to ask questions, it’s OK to ask the clinician to potentially explain why a specific treatment protocol has been selected, to really talk it through a little bit more. Because if in those discussions, they find out that maybe a certain protocol or a certain treatment program has been developed because of an aspect of their disability, probing that a little bit and pushing it a little bit, I think is very reasonable.
I think that we often underemphasize the importance of rehabilitation after cancer treatment. Most people with disabilities might come into their treatment with a preexisting mobility impairment or another type of disability, that then could be exacerbated by the impact of chemotherapy or radiation or surgery in those cases. It’s really important for patients to understand that cancer rehabilitation is its own entire field, and that they should be requesting and making inquiries about those services and whether they might be available for them.
This transcript was edited for clarity and conciseness.
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