The intersection of cancer and disability

The Americans with Disabilities Act allows rights and accommodations to cancer survivors to support their daily lives, employment, and education, but only 50% of cancer survivors identify as disabled. While some people with cancer have pre-existing disabilities that require special support during their care, most patients are newly disabled as a result of their cancer diagnosis and encounter unique challenges related to their treatments, such as problems with movement and mobility, daily activities like eating, fertility issues, returning to work, deciding if and when to disclose their diagnosis at work, and navigating ongoing treatment side effects.?

Natasha Steele , MD, MPH, Stanford clinical assistant professor of medicine, is a member of Stanford Medicine Alliance for Disability Inclusion Equity (SMADIE), which is an advocacy community composed of people with diverse backgrounds and allies to advocate for resources, education, training, policies, accessibility, and services at Stanford Medicine and on the national level. Steele came to the group through her own cancer diagnosis in 2020. Today, with her cancer in remission, she practices perioperative medicine and cares for hospitalized patients with head and neck cancer. She uses her lived experience of disability to inform the care she provides to patients.

“It was an invaluable experience for me, as a physician, to have been a patient at Stanford because not only do I believe we really do provide world-class care here, I have a first-hand understanding and empathy for our patients, day to day, which informs my practice of medicine.”

Cancer as an acquired disability

Some people with cancer have pre-existing physical, neurological, cognitive, and/or emotional disabilities that may require physical accommodations, more shared decision-making among family and care partners, and special support services to access care, such as Stanford’s psycho-oncology group that consists of people trained in the understanding of the challenges of cancer and the stress it puts on mental health.?

However, most people with cancer experience cancer as an acquired disability and have to learn to navigate the world as newly disabled, which is an added layer of complexity as they deal with the stress of their cancer diagnosis and treatment. Additionally, Steele acknowledges that some people with disabilities may not identify as being disabled and some disabilities are temporary, which is something providers should be mindful of when supporting patients.?

Steele says patients often have the experience of cancer as a disability as an unintended consequence of the lifesaving treatments they receive. They may experience physical limitations, fertility issues, and employment challenges as a result of their treatment. Further, she notes that post-treatment survivorship poses a new and unique set of challenges. Patients transition out of oncology to primary care but continue to have cancer-related issues like cognitive dysfunction or chronic pain from treatment.?

Steele shares, “The Stanford Survivorship Program is laser-focused on addressing the needs of these patients through clinical services, research programs funded by the National Institutes of Health, and education and training for the next generation of physicians.”??

Supporting patients with disabilities

Effective patient-provider communication is essential when it comes to supporting patients with disabilities. Providers should ask patients if there are things they should be aware of that make the patient’s treatment different or unique, such as sensory challenges or post-traumatic stress disorder, so the provider can help the patient access the right services and resources to make the treatment successful. Steele stresses that it’s important for providers to be aware of the patient’s experience and not make assumptions.

It’s also important for providers to know local and national resources that can support the patient. Steele says that the best doctors are the ones who are proactive about knowing what resources the patient can use. An example is Cancer and Careers , an organization that helps patients transition back to work when treatment concludes, including giving them information on their legal and financial rights and appropriate workplace accommodations and offering to review patients’ resumes to account for the time spent getting treatment. Steele frequently shares a database she helped create with the nonprofit CancerCare that can help patients find out what supportive resources are available to them in their area.?

Patients are further supported by multidisciplinary teams that help get the patient to their appointments, assist with finances, insurance, or housing, and anticipate and understand support programs and resources. Steele cites Stanford Cancer Navigation Services as a great resource in helping Stanford patients understand and use in-house services, including social work and case management, throughout their journey.?

“For someone with cancer who might have a new disability or new identity that is disabled, it can be powerful to access supportive care resources as well as to find community and learn from the wisdom of other folks who have been through it.”

Centering the patient's voice?

Steele wants her patients to feel comfortable asking any questions they may have and feel in control of their treatment. She promotes the idea of patients bringing an advocate, such as a family member or friend who knows the patient well, to their appointments to help facilitate conversations with the provider since advocates often can be great sources of questions and information.

“We now understand that the best care comes from shared decision-making and having a bilateral exchange of ideas to come up with a personalized and value-oriented care plan.”

Steele says that as a physician and patient, she loves that Stanford keeps the patient's voice and experience at the heart of providing care. To that end, Stanford formed The Disabilities Patient Family Advisory Council as a conscious effort to invest in the ideas, sentiments, and needs of patients with disabilities by gaining insight and feedback on big decisions for Stanford programs and operations that impact patients.?

Doctors with disabilities

Traditionally, medicine has excluded people with disabilities from practicing, but there is now the understanding that disability is diversity, and there’s a growing movement to recruit,? train, and retain providers with disabilities. Providers with disabilities may inherently have unique insight into the patient experience that can lend itself to more empathetic, collaborative care.

“If the workforce of healthcare providers is representative of the patients they care for, then you’re naturally going to have parallels in patient’s priorities and viewpoints with the group of people that care for them.”

SMADIE works to increase both the visibility of disability in the medical community and the representation of disabilities among physicians. For example, SMADIE leaders collaborated with the Stanford School of Medicine to revise its technical, physical, and mental health requirements for medical school to be more inclusive of students with disabilities. Steele and colleagues also give an annual presentation about disability to Stanford medical students, and each year students approach them after the talk to discuss their lived experience of disability. Additionally, SMADIE leaders engage in efforts to increase understanding and visibility nationally, including speaking to Graduate Medical Education program directors and publishing their stories in high-profile publications like The New England Journal of Medicine.

“My hope for SMADIE is that we continue to really build a groundswell of people who have gone through different experiences of illness and disability and empower them to find it as a source of strength and longevity in their medical careers and not have it be a scarlet letter or something they feel is going to end up harming them. We’re working to create pride and visibility and showing that this could be your greatest asset in practicing medicine.”

By Katie Shumake

#inclusionmatters #disabilityrights