Healthcare for every body

We’re re-featuring this piece today in recognition of Disability Pride Month 2024.

Patients dealing with chronic pain and illness tell me some harsh truths about how the healthcare system treats people, especially people with disabilities. One of my patients is an older man with congestive heart failure and spinal stenosis who hates how the ER staff call him a “frequent flier.” Another is a woman with fibromyalgia who told me that a surgeon called her “fat” while he thought she was sedated. Yet another is a young Deaf man who felt extremely uncomfortable when a doctor went to examine his hips without waiting for explicit permission from the ASL interpreter. If I had a dollar for every time a patient told me a story about feeling mistreated and dismissed when they sought healthcare, I could probably retire.

I hear stories like this so often that it’s hard for me to believe that we’re all striving to give exceptional care to every patient. Sure, we’re doing our best, but medical training isn’t as focused on the human experience of pathology as it should be. Every person needs healthcare at some point in their lives. But as healthcare professionals, we’re not trained to consider how people, especially ourselves, can be impacted by disability. Disability is an inevitable part of the human experience, and doctors need to know more about it.  

Physicians can indeed offer exceptional care to every patient, but this is possible only if our care is inclusive of people with disabilities. Here are a few tips:

1. Ask about preferred terminology.
Ask patients about preferred identifiers and terminology to eliminate biased language and incorporate more accurate vocabulary, like “wheelchair user” instead of “wheelchair bound.” Also, ask where they’re from, about their favorite hobbies, their career, and their pets, so you can perceive more than just their health challenges. 

2. Work for patients.
Centering patients as the leader of their healthcare team eliminates outdated and paternalistic behaviors in medicine. Adapt the mindset that as physicians, our role is to help patients make informed decisions that align with their health goals. They’re the boss and we work for them. 

3. Make knowledge accessible.
Teach patients about what’s happening in their body that causes their symptoms. Present treatment options with words that are easy to understand. Offer concise summaries of your discussion so they don’t have to remember everything. Ask about what tools they might need to better access the information, like large print text, audio or image descriptions, voice to text transcription, Braille, et cetera. 

4. Be accountable.
It can be uncomfortable to acknowledge inherent bias and past mistakes or harms. It’s ok to not know what to say every time if you’re open to learning from the disabled community. If you’re ever in doubt about what to say or how to act, just ask someone with a disability, and they’ll guide you.  

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.