Rethinking how we describe SMA patients in medical paperwork

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by Halsey Blocher |

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Throughout my life, the doctors, nurses, and other medical personnel who have cared for me have filled out a collective mountain of paperwork. I’m willing to bet that far more of my days have been documented than not. Most charting is electronic now, but there are certainly boxes full of files from my childhood and teenage years that are collecting dust in the back of storage rooms somewhere.

Although the way we fill out paperwork has evolved with technology, much of the standard terminology that’s used in charting hasn’t changed. Select words, phrases, and symbols are routinely used in documenting a patient’s care or health, and they’re understood by various medical professionals.

Having consistent methods of communication is necessary to minimize confusion, but some of charting’s common descriptions could inaccurately reflect the experiences of those living with SMA and other health conditions. Following are a few examples.

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When a ‘refusal’ isn’t what it seems

My care plan is essentially a guidebook that tells my home healthcare team what kind of care I need and when. Additionally, each task it describes is listed on the charts that nurses and attendants fill out during their shifts. Whenever they complete one, it’s checked off or a note is written about the care that was provided.

If a task from my care plan wasn’t completed, that’s also documented. Some systems require marking that I “refused” that part of my care, including enjoyable activities like socializing or shopping trips. Here’s the problem: Just because something wasn’t done, that doesn’t mean it was refused.

I’ll need ibuprofen to better explain this. No, I’m not getting a headache. However, I’m prone to headaches and migraines, so ibuprofen is on my medication list. Because the prescription allows for it to be administered multiple times per day, if needed, it comes up in the charting system during every shift. That means that whenever I don’t have a headache or other discomfort, it’s acceptable — if not required — to document that I refused this medication.

Doesn’t that make me sound like such an uncooperative, difficult patient? But the truth is that the treatment just wasn’t needed that day, and that’s a good thing!

We’re not in denial

While ibuprofen is wonderful for curing headaches, unfortunately it does little to ease my discomfort with the documentation process I describe in the next example.

Pain management and monitoring are an important part of medical care, and to ensure it’s properly addressed, patients are often asked to rate their pain on a scale of 1 to 10. When a patient expresses pain, appropriate relief is administered, and caregivers will continue asking for a new rating to see if those measures have been effective or if something else should be tried to alleviate the discomfort.

Once a person’s pain has dissipated to a rating of 1, their declaration of being pain-free needs to be added to the chart. It’s often written that the patient has “denied” being in pain. The same phrasing is also used to describe patients who never expressed discomfort in the first place.

Again, there’s a problem here. The word “deny” doesn’t imply that there’s an absence of pain. It suggests that someone is in pain but won’t acknowledge or accept it. We’re not in denial whenever we’re not hurting.

An individualized approach

It might sound like I’m reading too far into this. People know what these words mean in medical settings, but I’m a writer. It’s my job to dive deep into the meaning of words and consider all the ways they might be interpreted — or misinterpreted.

I’m also an SMA patient, and I believe anyone receiving healthcare should have a say in how their case is represented in medical records. Our healthcare providers must document their observations about our condition, but we should still have the right to be spoken to and described in a manner that respects our experiences and doesn’t place shame or blame on us when we’re seeking care.

I once wrote a column arguing that there needs to be more than one acceptable way to talk about disability. In it, I said, “I don’t believe we can properly describe such a diverse group of people with just one type of terminology. Our disabilities, personalities, interests, and backgrounds are all unique, and we need more than one way of speaking to reflect our uniqueness and how we see ourselves.”

When our health is as individualized as we are, medical spheres should respond in kind. There are times when these words are fitting, but there would be great benefits from expanding common medical vocabulary to make simple phrases like “not applicable” or “not required” more acceptable. That way, we could create safe, inviting spaces where patients feel comfortable communicating their needs without fear of inaccurate representation. And that will lead to more people getting the quality care they need and deserve.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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