Tessa Richards: Words that annoy, phrases that grate

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

Tessa_richardsMedical 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 consultantwho mostly you never get to see anyway.
  • “Describing children with  developmental disability and genetic syndromesThis 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.

  • Sonya Bushell

    The Down Syndrome Association recommends using the word ‘chance’ rather than ‘risk’ when discussing the likelihood of Down’s Syndrome. Sadly, the word ‘risk’ (along with even more outdated terms for intellectual disability etc) is still in use at my medical school.

  • Tessa Richards

    The balls rolling. Just fielded.
    1. “X denies smoking ” ( or whatever) which smacks of x says he/she does not smoke but I’m not sure I believe it….
    2. “Patient claims that…” with the same connotation.
    3. Depersonalising terms eg asthmatic, autistic etc

  • It seems like a common thread that people are somehow to blame or somehow “Less” because they are sick. This is especially true when they are sick for a long time (chronic illness) or with several problems (multiple co-morbidities). It’s hard for doctors to imagine people could be so sick or sick for so long if they did not do something to cause it, or exaggerate their issues.
    I hope most professionals don’t realize how much they demean people with these phrases. Then maybe awareness such as this article brings could lead to change. Looking forward to others’ comments.

  • Margaret Fleming

    Gee, I didn’t get in on the survey, so wish someone had added: Elderly

  • maralva

    What ever happened to addressing the patient by his/her own name?

  • Mellanie True Hills

    “The Patient Journey” insinuates that all patients with a specific condition take the same journey, as though following a map from X to Y. This term depersonalizes what each individual with a condition is going through and feeling. But, I’m OK with the term “patient experience” as that feels more personal.

  • Diane Stollenwerk

    “We’re all patients” said by doctors, nurses, hospital leaders, and others who work in health care as if they as health care insiders understand what it’s like to be a patient. Totally dismisses the fact that once you know something (like medical terminology, how the ‘system’ works, etc.) it is impossible to know what it’s like to NOT know it (aka ‘tyranny of knowledge’). Health care professionals do NOT have the same perspective as patients and cannot replace their views with the honest perspectives of real (non-insider) patients. You want to provide patient-centered care? Get patients involved in figuring out how to do it.

  • Innovations Dementia

    I was delighted to read this excellent blog and I would like to tell you a little about our specific work on language and dementia.

    Our organisation – Innovations in Dementia CIC – supports a network of groups led by people with dementia all around the UK (now over 85 in number), called DEEP. I and my colleagues find that language comes up regularly as something that not only annoys and grates, but also brings people down. Being called a ‘sufferer’ or ‘victim’, or described as ‘fading away’, leaves little positive for them to hang on to, and denies that it is possible to live well with dementia (as the title of the Government’s Dementia Strategy says. Even being called a ‘dementia patient’ (especially when not in a health setting) ignores the fact that they are, like all of us, first and foremost a human being.

    A couple of years ago, DEEP joined with the national Dementia Action Alliance to launch a Call for Action ‘Dementia Words Matter’ (see http://www.dementiaaction.org.uk/dementiawords hashtag #dementiawords). As part of the Call, DEEP made a very short film The Power of Words (https://vimeo.com/122528299), which shows the effect that language has on people with dementia themselves. DEEP also wrote a simple guide http://dementiavoices.org.uk/wp-content/uploads/2015/03/DEEP-Guide-Language.pdf based on an event at which people with dementia decided what language was, and was not, acceptable to them.

    The Call to Action now has over 430 signatories, including Royal College of General Practitioners, Royal College of Nursing, Public Health England and Royal College of Physicians… but not as yet by BMJ.

    We would be very happy to help you and your readers in any way to promote a more sensitive, up to date and positive use of language around dementia. If you have any thoughts on how we might do this, do please get in touch. For example, I’m sure we can find people with dementia who would be happy to talk and educate on this issue at meetings or events – or in an interview or article for BMJ. It would be fantastic if BMJ were to support the Call, and to use your amazing reach to encourage others to do the same.

    Once again, thank you so much for raising this important issue, and I very much look forward to hearing from you if we can work together in any way to take things further.

  • yes the asthmatic is like “rheumatoids” or “diabetics.” These have to be on their way out.
    And Oh my, Tessa. I can’t believe I didn’t mention the “patient claims that..” earlier. One of the worst phrases because of the implication that we begin from a position of doubt regarding the patient’s testimony

  • KC

    Interesting. In my patient organisation we have tended to use the term “patient journey” to describe the patient’s experience – as opposed to “care pathway,” which often seems to be about the system perspective and seeing the patient as something that is “processed” through the system. But I take your point that the “journey” is not by any means linear, and much more messy and individual for each patient.

  • Mellanie True Hills

    Academic researchers tend to use the term to denote that every patient takes the same journey, and that is the use that we find most offensive. I first became sensitized to the term by cancer patients who found it totally demeaning in the way healthcare providers used it with them. Many of us cardiovascular patients have come to find it demeaning as well when used by HCPs. There is a huge difference for us between “patient experience”, which is personalized, and “patient journey”, which is generic.

  • Michael A. Weiss

    Congratulations on bringing to the forefront the stigmatizing effect of words within the context of healthcare, chronic disease management and the doctor-patient relationship. That said, I believe the way in which each patient perceives these situations is most important and we chronic diseased patients eventually figure this out. It’s similar to maturing and realizing there is no “Tooth Fairy” and waiting up for Santa Claus is as pointless as waiting for life to be fair. Personally, after almost 35 years battling Crohn’s Disease and the approx 200+ hospitalizations and almost 30 systemic surgeries it has caused, I’ve learned how effective “perspective” can be in nevertheless still maintaining a sense of normalcy and happiness. At the center of these perceptions was my epiphany that patients and medical professionals achieve the most effective results when they “collaborate” yet too many doctors refuse to listen to patients, in effect deeming their thoughts irrelevant to personalizing medical care. This is like an automobile repair person refusing to listen to the car’s owner when it is brought in for repair. It was nothing I read or was told which helped me enlist medical providers to my team, but nothing else worked and it was obvious a change in attitudes (that of both parties as mutual trust and respect must be present in order for any such relationship to succeed) was necessary to improve outcomes and preserve patient dignity. Your blog post points out the antiquated disparity of the roles played by patient and medical professionals, but I’m not confident mere “words” are strong enough to give your keen observation the sustaining effect necessary. This is why I have, at many times, dedicated my life to being a Patient Advocate. But you have put words to the “listening” and “credibility disparity” problems which have permeated and plagued healthcare for far too long. Thank you for shedding light on this problem.

  • Sabine Wildevuur

    Academic research has to follow certain rules and regulations. That almost automatically leads to applying ‘words that annoy’ as mentioned in the blog. For the simple reason we build upon previous scholar work and refer to terms used in that work. I want to plead for a patient-healthcare professional-partner board that can give feedback on manuscripts we are preparing for publication on terms for which we became ‘blind’. Otherwise we stay in this vicious circle of using ‘words that annoy’ in publications to come.

  • Tess Kennedy

    I also am not sure or confident that mere words will change the attitudinal superiority that medical professionals adopt.
    I have a strength of voice, I am an advocate for others, I am not meek, I’m unafraid to speak out… in 12 years of progressive seropositive RD with pain that keeps me awake till 6 am yesterday – I haven’t made a dent. I’m not openly resented for using my voice, but there is a continued underlying dismissiveness that comes my way. I often break down when speaking with the medical team as I feel despair that they aren’t listening, don’t wish to hear, and refuse to ‘act’ upon the symptoms that actually exist with the patient, coming forth with some tangental side shoot.
    A comment made to me by a RD registrar, half my age said within the earlier years of diagnosis, after a painful joint aspiration that left me traumatised and shaking, she had the termerity to say ‘it shouldn’t be that painful’, what on earth does that even mean – can she somehow transport herself into my body. I was so traumatised by this intervention that I drove directly to the GP surgery and waited till I was seen, shaking all over my body and was given diazepam to sedate myself. I frequently take diazepam before hospital visits so I can manage the way the medical professionals lack respect let alone sensitivity or compassion; it’s deeply ironical that a hospital is a care system and irony that seems lost on medical professionals.
    My partner, who has long since stopped attending with me says his view is that the RD medical professionals are in denial about RD, as the pain itself is unimaginable to them and the systemic destruction of the body and they don’t really have any treatments for the most aggressive RD. Tried everything on the treatment tree, in toxcilzumab but only relieves and does not control flaring.

  • Tess Kennedy

    So true indeed. Due to my own work I also learn how medical health professionals are kicked up the treatment ladder with special privileges.

  • Academic research has to follow certain rules and regulations. That almost automatically leads to applying ‘words that annoy’ as mentioned in the blog I hope everyone finds healing

  • Ken Masters

    I don’t want to be “that guy”, but I think we do need to see things a little in perspective on 2 points:

    1. We should not condemn any health professionals for using these words, lest we are happy to be condemned in the future. Language changes over time, and medical terminology is not immune to that. Most of these words were neutral or positive when first used, and have become negative with other influences. I can guarantee you that for almost all of the alternatives that we propose, in 100 years’ time, people will scold us for using these words, and will suggest others.

    2. We also need to consider just how much of a problem this actually is, within the larger context of global health care. When you make a big deal about this, you lay yourself open to being accused of over-emphasising trivial 1st world problems: In the “3rd-world”, we worry about the millions of people who die annually of malaria, HIV-AIDS, malnutrition, total inaccessibility to health care of any sort, etc.; in the 1st world, you worry about whether to use the word “client” or “patient”. Mmm.