UChicago Medicine

Marita Kametas

Patient Language Advocate

As an advanced practice provider serving patients with inflammatory bowel disease, I am often struck by the language used within their healthcare journey.

Language and inference can inform patients' attitudes, perspectives, and the way they will interact with healthcare in the future. This language may seem insignificant, but the schema of our vernacular can inform not only the patient’s view of the care team but also their view of themselves and their journey alongside a chronic disease.

This can be seen quite clearly when we discuss patients who have previously been exposed to medical therapies that have been ineffective at controlling their disease. A common case presentation can sound like, “Ms. Smith is a 26-year-old Crohn’s patient who has failed infliximab, ustekinumab, and adalimumab and presents today to review other therapy options.” How we discuss the ineffectiveness of medications can often leave the patient questioning if they failed medications or the medications failed them. Fine-tuning the language we use surrounding medical therapies can support the care of the patient as a whole person beyond their inflammatory burden.

When we frame treatment experience as a failure, we risk impacting patients’ self-efficacy. The way we structure our sentences matters. There is a paucity of data evaluating the impact of language in the treatment of IBD; however, in my clinical experience, the use of negative language reinforces the negative stigma the patient may already feel about their disease process. Sometimes, this is a stigma the patient may not openly share with the care team. This can manifest as hesitance to try other advanced therapies or anxiety or depression related to their diagnosis and treatment.

So, it bears the question, could a simple rearrangement of a few words positively impact the patient’s view of their disease and treatment? Leaning into what we know about trauma related to chronic disease experiences may help to answer this question. Some qualitative research has shown that patients who are met with language that is alarming or negative carry that with them, and it can impact how they view their disease in the future. This can also rupture the therapeutic relationship between healthcare professionals and patients.

This can also be extrapolated to the way surgery is discussed with patients.

Speaking about surgery as a last resort or a failure can leave the patient feeling vulnerable and frightened. It is the provider’s responsibility to review surgical options as another tool in the treatment toolbox as opposed to a last resort. Surgery can lead to many fears about body image, scars, complications and the creation of an ostomy. An aim of treatment should be to lessen the burden of disease by addressing these fears and leveraging our language to support this. Using supportive language may aid in the mitigation of trauma related to diagnosis and treatment.

Language can undermine our therapeutic relationship with patients, or it can cement its foundation. A strong foundation with the care team supports the patient through flares and remission. Through this support, we may lessen the burden of living alongside inflammatory bowel disease for our patients and create a more positive patient-centered treatment landscape. Chronic inflammatory disease is the constant companion patients never asked for; failure does not have to be.