What’s in a Name? Person-centered Dialysis Language

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on September 18th, 2014.
What’s in a Name? Person-centered Dialysis Language

Sticks and stones may break my bones, but names will never hurt me.”

We've all heard that sing-song phrase as kids, right? Too bad it’s never been true. Names can hurt. Language, especially medical language, is often not neutral and can be:

  • Judgmental (like “non-compliant”).
  • Harmful. Equating CKD5 with ESRD has led to a US trend toward starting people on dialysis with GFRs of 15, when several studies suggest that this is not only not helpful, it may even increase mortality.
  • Scary, like “end-stage renal disease” which makes it seem as if lives are over, not just kidneys, or saying “stick” when we mean cannulate (as Stuart Mott points out, we stick up banks, we don’t stick people).
  • Confusing or too overwrought to understand, so meanings are lost on the individuals who need them most.

I’ve seen a lot of all three in the nephrology world, and so have you. Sometimes, we don’t even understand ourselves or each other. For example, it would be helpful if we would adopt clear terms for how to describe HD treatment sessions. i Even journal articles tend not to specify treatment duration or days for HD, assuming that all standard in-center HD is the same, yet we know from the DOPPS that this varies considerably from one country to the next.

When someone says he does “short daily” HD, drilling down may reveal that he does four 4-hour treatments a week, six 3-hour treatments, or even five 2-hour treatments (the latter makes me very, very nervous—it’s less than standard in-center HD! And, yes, I do see it often.) It didn’t help that some of the innovators in what is now being called intensive HD called it “quotidian”—sorry, but one of the worst words ever!

Why don’t we just adopt a simple days/nights x hours approach? It might look like this:

  • 3Dx4H = three days per week of 4-hour long treatments
  • 3.5Dx5H = every other day 5-hour treatments
  • 5Dx3H = five days of 3-hour long treatments
  • 6Nx8H = six nights of 8-hour long treatments

Personally, the word “patient” bothers me when we work in a chronic disease field . I think we’d like people to be patient when their prescriptions aren’t ready, their chairs aren’t ready, their training slots aren’t available yet. But, calling people “patients” seems like asking them to take on a “sick role” where, as Talcott Parson’s claimed, they are exempt from “some or all normal social duties” like work or school.ii

The problem is, Parson’s assumed an acute illness that would go away at some point. CKD is for life, so maximizing good vs. bad days and easing symptoms is what matters, with the aim of helping people to be as active and functional as they can be. If we assume that everyone with failing kidneys should have a forever pass from normal life, we may be lowering our expectations too much. Some people do need this—but not everyone does.

Interestingly (to me, at least), the word “patient” doesn’t appear at all in the DO or the DON’T column of a CDC poster on Communicating with and About People with Disabilities.iii “People first language is used to speak appropriately and respectfully about someone with a disability,” the piece notes. Hmmm. Instead, how about:

  • Person
  • Client
  • Consumer

Let’s quit using the word “facility,” too—and “unit,” for that matter . When we describe a place where one might go for a home dialysis training or to get treatment, do we really need four syllables—and a word that sounds like a sanitarium? Syllables are the enemy when we are trying to keep our materials clear and understandable to a lay audience. Dialysis is bad enough, with four syllables, which is why we try to abbreviate it to PD or HD as quickly as we can in MEI materials. Unit (two syllables) is shorter, but so vague that consumers may not have any idea what we’re talking about. We use clinic—it’s two syllables, and everyone knows that a clinic is a place to get medical care. With medical homes and accountable care organizations on the near horizon, dialysis clinics may soon offer more “regular” medical services anyway.

Speaking of syllables, there is no prize for using more of them. We are all busy, and plowing through thickets of unnecessary syllables is time-consuming and stressful even when we do know what they mean. (I’ve contacted journal articles authors more than once to confirm that the press interpretation of their piece was, indeed, exactly the opposite of what they intended to say.) Imagine how much worse this process is when you are scared, anxious, and perhaps not the strongest reader even on your best day, or the information you need is not in your native language? The English language is so rich that it’s rare that we must use a 3+ syllable word. Here are some examples:

instead of this, try this

Words are not our only means of communication, but they do matter. Why not choose words that are respectful, reassuring, and clear?

i Agar JWM, Macgregor MS, Blagg CR. Chronic maintenance hemodialysis: making sense of the terminology. Hemodial Int. 2007;11:252-62

ii http://www.england.nhs.uk/2013/09/30/ed-mitchell-2/

iii http://www.cdc.gov/ncbddd/disabilityandhealth/pdf/disabilityposter_photos.pdf

Comments

  • Pete Costello

    Oct 8, 10:40 AM

    I invite you to read a commentary I wrote for AJKD concerning the use of the term " dialysis patient" in the outpatient dialysis unit. Thanks

    http://www.ajkd.org/article/S0272-6386(12)00925-0/fulltext

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    • Dori

      Nov 5, 7:34 PM

      This is terrific, Pete! What a terrific observation! Sorry it took me this long to get back to the comments on this post, but I encourage anyone who reads these to cut and paste this link into your browser and read Pete's post. It's worth the time.

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  • MarciaH

    Oct 7, 6:22 PM

    Thank you for the wonderful article. I am an ESRD or CKD5 "patient" and I'm also a Psychologist who thinks a lot about the use of language and its effect on people. I think this very catatstrophic, final-sounding language puts the fear of God in, certainly, me. When I was first diagnosed, I was seeing a nephrologist who kept using the word "failure." What a horrible program to set up in a person who happens to be a patient! I used to leave those appointments thinking that I had better rush out and buy myself a cemetery plot because I would soon find myself needing one. It's now 5 years later and, thankfully, I am still "failing" but haven't "failed" yet. Yesterday I saw an eye doctor and in the course of having my eyes checked it came up that I have all these health issues. Then he kept referring to me as "sick." And I kept telling him that I feel fine and that I know I have an liability cooking, but to give me the identity of being "sick" can hardly help me maintain the health I have left.

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    • Dori

      Nov 5, 7:37 PM

      Unfortunately, the term "ESRD" is a legal one, so we in the kidney field are stuck with at least explaining it so that when it comes up, folks know what it means. That said, there is still a lot of confusion. I've heard many folks say, "I have stage 3 chronic kidney failure." Um, no. We do need language to talk with each other about health and illness, but focusing on what works (not just what doesn't work as well as it should) is important, too!

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  • Amanda Wilson

    Sep 23, 9:10 PM

    I agree with what everyone else says. I do sometimes, wish however, that people outside of the dialysis community, would recognize it for what it is - life support and a life saving treatment. people seem to fail to realize that dialysis is a treatment that keeps a person alive, just as surely as a respirator does for someone who can't breathe for themselves. If someone is on a respirator they are described in hushed terms as being on 'life support' and the gravity of their situation is respected. That attitude does not seem to extend to dialysis. At the same time I don't consider that I am dying anymore than the next person, unless that is, I have been dying for the past 25 years, but how often do you hear the term 'life-saving' when you read about someone who has received a transplant, but not in the context of dialysis

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    • Dori

      Nov 5, 7:40 PM

      That's one of my pet peeves as well, Amanda--the constant use of "life-saving" for transplant, but not for dialysis. Both save lives. Maybe the difference you see between a respirator as life support and dialysis is that a respirator must be used ALL the time, while dialysis is most often done intermittently. I wonder if a wearable artificial kidney (WAK) might help raise awareness that dialysis really IS life-saving, because those who use it will wear it all the time, and in public where people will see it. We may find out soon!

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  • Henning Sondergaard

    Sep 22, 2:45 PM

    Great point, Dori.

    It is so incredibly important for us (both as patients and healthcare professionals - and I can say this being both at the same time) to use start communicating in a manner where we understand each other.

    When I see journal articles use terms like "standard in-center" or "short daily" without specifying what that means, I just think it's bad science and a complete lack of respect for the subject and the people being studied.

    Being a disability rights activist as well as a kidney patient and mental healthcare worker I can only agree with you on using something other than 'patient.' However, I am not quite satisfied with any of the alternatives - not that I have any better suggestions. 'Consumer' suggests a person who is using (or maybe even abusing) the services. 'Person' might be my favorite, though it doesn't specify who the person is in connection to the persons who are on the other side, namely the professionals. 'Client' has always struck me as a bit cold, though that is what I use for the people who come and see me - so I guess I can't really say that doesn't go.

    But 'clinic' ...what else should it be?

    Unfortunately I think the difficult language is yet another way for professionals (especially doctors, alas) to raise themselves up and set them apart from their patients. We all know that we feel a tiny bit dumb when we don't quite understand what someone else says and I think this is used (whether deliberately or not) by the medical professions to consolidate their perceived superiority over patients. Language used in this manner simply becomes a tool to establish an unequal power relation

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    • Dori

      Sep 23, 8:38 AM

      I think John Agar made a great point in his comment--MDs are trained to use the "professional" language--but NOT in how to translate it back into English. I remember doing an audiotape where I was interviewing a highly respected nephrologist for a consumer audience. I asked him a question, and he replied with nothing but 5 and 6 syllable words. When he got to the end, I said, "Great! Now, can you say that again in English?" And, he did! But, it hadn't occurred to him, even though he knew who we were doing the tape for. A sense of audience is not a common thing, in my experience. That's why so many materials written by nurses (for consumers) end up written FOR nurses (and not consumers).

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  • Miriam Lippel Blum

    Sep 22, 1:55 PM

    Great column, Dori! Especially the part about changing the way short daily HD is referred to.

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  • Dori

    Sep 21, 8:09 PM

    Yup--this one may just be you and me!

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  • John Agar

    Sep 18, 6:44 PM

    Hear, hear!

    Well said, Dori.

    As you know - thank you, you quoted us - Mark MacGregor, Chris Blagg, and I made a plea for 'straight language' back in 2007 in our paper in HDI on dialysis terminology.

    That paper - of which I was (and remain) exceedingly proud, but deeply disappointed that it seemed to be almost embarrassingly ignored - dealt purely with the lack of descriptive precision in 'scientific' papers about dialysis ... e.g. the use of the term 'conventional' HD when there is no such beast.

    Indeed, you make that point again, and beautifully, in your description of the sloppy use of short daily HD.

    In the dialysis literature, we need to be far more accurate in our description of the dialysis we are describing, not only by stipulating hours and frequency, but specifying other variables: flow rates, dialyser membrane type, etc.

    It makes a nonsense out of any paper on, for example, 'short daily' dialysis if it does not state exactly which 'short daily' it seeks to describe ... and, using your examples, is it 4x4, 6x3, 5x2 etc. Each of these will likely yield very different outcomes, all are NOT the same, and to potentially lump all together under the one banner 'short daily' will trend to a 'rubbish in, rubbish out' conclusion.

    Your second (and arguably more important) point --- our failure to use plain and simple Anglo-Saxon words of one to two syllable words when explaining stuff to 'patients' ... oops, there I go using one of your taboo words! ... goes to the skills we have as communicators.

    This is something that is NOT taught well to medical students and trainees as we evolve their medical terminology through med school. We only teach them how to use the complex language of medicine, but not how to devolve it back to everyday words.

    I see my patients' eyes glaze over ... and, sorry, but I doubt I will ever manage to change my use of 'patient', Dori ... when my junior house staff start talking about rising creatinines and worsening eGFRs ... and I sense their palpable confusion.

    So, I step in and say ...

    "Think of a row boat. Drill a hole in the bottom, and the water will start pouring in, slowly filling the boat with water till it sinks. Luckily, a pump is there to pump the water out. If the water stays low, the pump is winning. If the water is rising, the pump is falling behind.

    So it is with our bodies - the cells that make up our bodies make a certain amount of waste every day. The amount of waste they make, day by day, is much the same. This waste enters the blood and is carried to the kidneys. The kidneys are the 'pump' that pumps this waste out and away in our urine.

    Just as the water level in the boat will rise if the pump is failing, or fall if the pump is winning, if level of waste in the blood is rising, the kidneys are falling behind, and if the blood level of waste falls, the kidneys are winning. An easy waste to measure in the blood is a substance called creatinine. The level of creatinine in the blood gives us a way of working out if the kidneys are winning or loosing.

    So ... a rising blood creatinine tells us that the kidneys are failing, and the higher the creatinine, the further behind they are, but if the creatinine level is falling, the kidneys have made a little headway. That's why we measure it, and regularly, to get an idea of how well, or poorly, the kidneys are coping."

    ... OK ... it might take a little longer, but the glaze goes, the lights come on, and I hear a murmured: 'thank you, now I understand'.

    And, I know I have just captured that 'person's' attention - and trust.

    Well said, Dori ... if only more would read your piece!

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    • John Agar

      Sep 23, 7:43 AM

      Thanks for all the comments .. most of which I agree with, except perhaps the 'perceived superiority' and 'unequal power' concept of professional (read doctor) over patient/client/consumer - and, I agree, too, that none of these are quite the right term.

      I really don't believe that the vast, vast majority of doctors use complex terminology to patients (let me use that word, despite its' imperfections) to exert, imply, gain 'power' or 'superiority'. I think you wrong most doctors if you really believe that.

      No, I really believe that most doctors innocently, inadvertently, inescapably become so immersed in, so caught up in the jargon of their professional 'peers' that they lose the ability (or will) to devolve back to ordinary, everyday language or ordinary descriptive explanations. That skill, that escape from complexity back into normality needs far more work to be done. I see this inability to translate back from Latin and Greek derivatives into ordinary English in my house staff, every day.

      I do not think they are seeking 'power over' .. though I understand how some may, in error, or frustration, see it that way .. rather, I think that complex expression is so belted into our young doctors that they become 'powerless' to express themselves or the concepts they see to explain in the simple words they have all but forgotten.

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