What is acceptable or unacceptable medical terminology in today’s world, asks Tessa Richards.

Medical paternalism may be on the wane, but the medical lexicon is littered with words and phrases that can feel top down and demeaning. While it’s convenient to categorize people by their disease and its severity, few look in the mirror and see “a poorly controlled diabetic,” or “a terminal cancer patient.” And who would introduce themselves as a co-morbid patient with multiple complaints? Language evolves and The BMJ is seeking to stimulate debate on what is acceptable or unacceptable terminology in today’s world, and amend our house style accordingly. We’ve started by inviting our patient panel to tell us what words and phrases irk them and suggest possible alternatives. Readers are warmly invited to respond and add to the list.

• “Managing” the patient rather than the condition. “Bedblocker, frequent flyer, heart sink patient.“ “Referring, admitting, discharging patients”—it comes across as “patient as a bit in the system” being moved around.
• “Consenting the patient”—Let’s change informed consent to informed request.
• “Being called a client”—When my Dad went from being cared for in hospital to being cared at home, he suddenly became “a client”—a word that irritates the heck out of me not to mention my Dad.
• “Leaving off the term patient”—I hear the doctors just say, for example, “Rheumatoids“ when referring to patients with RA/RD. Doctors who use these words think it’s fine and seem oblivious to how insulting and rude they sound to people who are patients. In diabetes-related discussions the move is to “people with diabetes” or “PWD.” So I have been promoting “people with rheumatoid disease” (PRD) in our community.
• “A sufferer (or suffering from)”—My son (who was harmed in the healthcare system when he was a newborn) finds this term very annoying and he has written a play [which makes this point] called “Cal Sheridan, Not Suffering.” It won an award at the Kennedy Center.
• “Under the care of”—I hate this term. I self navigate my way through a wealth of different sub specialists whose views on best management vary. The only person whose care I have been consistently “under” is myself.
• “Adherence” and “failed therapy” or “failed treatment”—like we somehow failed an exam for not trying hard enough.
• “Subjects” to describe research participants. This term really irks me.
• “Comply with treatment or be compliant”—I suggest flipping it from compliance (to the doctor’s orders) to achievement (of my goal). In the compliance mindset, the patient gets no conceptual credit for having followed the instructions successfully
• “Confined to a wheelchair”—That is so wrong. It should be “freed by a wheelchair”– freed to move around independently, freed from exhaustion, freed from being homebound and isolated, freed from broken bones that will plague you forever, free from falls that can kill you, free to add normalcy to your life.
• I learnt that there are “Unworte” (bad words) that were tainted in blood and dishonoured in German medicine. Words (used as medical terms) used to turn humans into objects of eugenic cleansing. Words that would be harmful to anyone being addressed by them. Hence, I always flinch at the mentioning of “selection” processes and “euthanasia“ and anyone not giving a patient a name—but a number.
• Upsetting and stigmatising language in the HIV/AIDS world: If your viral load is so low it can’t be measured then you are “undetectable.” Everybody loves an undetectable patient. If your viral load is very low, you are termed “suppressed.” It is you, not your viral load. When your treatment stops working then you “fail the treatment.” But it’s the medicine that fails, not the patient. People with hepatitis C who are infected with a strain of Hep C which does not respond to treatment are called “non-respondents.” If accidentally you transmit HIV to your child as a mother, this is termed “mother to child transmission.“ Vertical transmission is less stigmatising and upsetting. You don’t even have to have HIV, it is enough if you have sex more or less regularly. Then you are a “high-risk individual“ or a member of a “high-risk group.“
• “Discharged from the care of X”—This term is militaristic. As if care starts and ends with a hospital consultant—who mostly you never get to see anyway.
• “Describing children with  developmental disability and genetic syndromes“—This is important for it not only reflects, but also informs parents’ and society’s thinking about kids like mine. For example, “Defect“ or “abnormality/abnormal.” I prefer anomaly. “Mental retardation“ (mostly everyone prefers intellectual or cognitive disability, or neurodevelopment disability or difference—this is an on-going debate and even the professional organisations have changed their name, but geneticists continue to insist to include this term in their literature.“Coarse features“ versus distinctive facial features and “coarsening of features“ when they become more pronounced with age. “Healthy” or “normal” to describe someone who does not have a particular syndrome, versus someone who does.
• “Hottentottenschürze“ This term can (or could) be found in German gynaecology textbooks and medical dictionaries. The Hottentots were an African people almost destroyed by German colonialists. The racial profiling included the myth that the Hottentots could store fat in their bellies  (like a camel’s hump). When the women lost weight, their lose skin would flap down over the groin. Who would want the use of that term to continue?
  

The BMJ will be hosting a #tweetchat about this topic on Thursday 13 April at 5pm (GMT). Do join the conversation on @bmj_latest using the hashtag #BMJdebate.

Tessa Richards, Patient partnership editor, The BMJ.