Language matters is not about being polite or swapping one word for another that conveys the same concept.
The reason why people with diabetes get upset and angry about words is that they betray flawed assumptions, presumptions and inaccuracies NOT because they’ve hurt out feelings. We may get upset about rudeness, incivility and being patronised too but that’s a different issue and one that many of us can solve by simply seeking health care providers with basic social skills.
Here’s a little story to illustrate what I mean.
Jack’s GP referred him to an endocrinologist for his diabetes. The referral said:
“… Jack is a type 2 diabetic of 1 years duration. He is not adhering to treatment recommendations, having failed to control blood sugars with oral meds and life style modification. His HBA1c has been steadily increasing over the last twelve months and as of d/m/y it was 12.2%. …”
The GP didn’t cause Jack emotional distress. The words were recorded in a communication between doctors, trying to convey ‘facts’. So there’s no problem here-right? I mean they’ve been polite even used the word ‘adherence’ instead of ‘compliance’-gheez some people are just so sensitive? The problem here is with lazy doctoring!
The doctor had not one jot of evidence to support the “diagnosis” of non-adherence. The diagnosis of sub-optimal control is correct but to go on and ascribe a cause, in the absence of anything other than opinion, is frankly, negligent. It was easy to assume that Jack wasn’t taking his meds and was chowing down on donuts rather than, you know like, doing medical investigations.
It was the GP who was non-compliant not Jack. The GP has failed to test Jack for ketones, c-peptide and auto-immune antibodies. If the GP had done this, he would have correctly diagnosed that Jack has type 1 diabetes and it wouldn’t matter how compliant he was with taking tablets, he would end up dead without insulin.
‘Compliance’ language* has led the GP to believe that diabetes is a matter of the patient doing what they are told. The HBa1c is understood as a measure of compliance with instructions. This understanding is then used as the basis for treatment decisions which can be very bad news for the patient. I’d also suggest that unsubstantiated opinions entered in medical records would be bad news for any doctor who is being sued.
A study of language in medical records in a tertiary hospital states:
“Clinician bias contributes to healthcare disparities, and the language used to describe a patient may reflect that bias….”**
or in other words
“Watch your thoughts, they become words;
watch your words, they become actions…”
*The GP has most likely learnt to believe this from the language they have seen and the attitudes expressed during their medical training.
**P. Goddu, A., O’Conor, K.J., Lanzkron, S. et al. J GEN INTERN MED (2018) 33: 685. https://doi.org/10.1007/s11606-017-4289-2