The Power of Positive Words

This blog post was made by Dr. John Agar on May 3rd, 2018.
The Power of Positive Words

The old proverb/saying/schoolyard chant: “Sticks and stones will break my bones, but words will never harm me” is wrong and should be re-written:

Sticks and stones will break my bones, and words can really harm me.” Words matter. Words can and do hurt and harm, especially if or when we are otherwise vulnerable through ill-health, or circumstance.

As I stood at the podium for yet another presentation at the Annual Dialysis Conference—this time in Orlando, Florida—a phrase I used carelessly in speech suddenly hit home! I was in the midst of introducing an under-appreciated issue in home haemodialysis, the patient who, by dint of time, circumstance, the passage of years, and an accretion of the barnacles of co-morbidity, is now struggling to safely sustain home haemodialysis, yet is fiercely determined to remain at home.

I meant to use the phrase: “struggling to safely sustain home haemodialysis” but slipped into all-too-frequent-doctor-speak, and thoughtlessly said, “the patient who is failing home haemodialysis.”

As soon as I said those words, I sought to reel them back, as if I could prevent them reaching the audience, but sound travels quickly—and always too fast for retraction. From then and throughout the rest of the talk, I was acutely attuned to other words, un-feeling words, none meant in that way, yet still, to some, undoubtedly insensitive…

I need to mend my words!” I said to myself.

I returned to Australia, determined to blog “words,” or the injudicious use of them, but then, what are the words that hurt the most? I decided to ask Dori Schatell to poll the users of the Home Dialysis Central FaceBook discussion group to find out. Dori posed a simple request: nominate your pet word or phrase dislike... The outpouring was staggering, with each nomination carrying the added weight of hurt or insensitivity. I have selected several to highlight below.

But first, there is one word that keeps cropping up as a “dislike:” “patient.” While “dialyzor” is favored by some, it is vehemently disliked by others. “Client” is a term I personally dislike and refuse to use. And, while I have sometimes replaced “patient” with “user,” on reflection “user” sounds a bit like a drug-bust! So, “patient” it has to be, as I have nothing better. For those who dislike it, feel free to suggest another (barring dialyzor, user, or client) in the reply” section below.

Now, to the words that hurt. It seems that my two top personal “avoids” are the same as the patient-reported ones:

1. Failure

2. Compliance—in all or any connotation—especially when it is used to label patients as “non-compliant.”

Variants of “Failure”

We must stop using the words failure, failed, and failing, not just when linked to a dialysis modality, like: “he is failing home dialysis,” or “She failed home transfer,” but, also in the context of transplantation, as the use of “failed transplant” upset some patients.

I must say that this latter use had escaped me as being pejorative, but some patients felt strongly that to refer to a transplant as “failing,” or “failed” suggested a failure of personal duty of care to protect and keep the graft —a sense that somehow their “negligence” had led to its loss. While this can be so, it is not true for the vast majority of lost grafts, so, yes, we do need to watch our words!

One member responded perfectly to encapsulate the reasons we should avoid using “failed” in transplantation. He wrote: “…My transplant didn’t fail. It lasted and did a fantastic job for 15 years. It was a great ride, but now I am on HHD. My transplant didn’t fail.”

More telling is when the word “failure” is applied in dialysis—and especially to home dialysis, yet use it we do, and regularly. No patient who goes home with dialysis—or who even considers or attempts home as a dialysis option—can ever be considered a failure. They are an astounding success for the bravery and resourcefulness of their endeavor. Yet, we repeatedly use the phrase to describe patients who have “failed home transfer,” have “failed home maintenance,” (short term, or long), or who have simply “failed” in any one of a myriad of ways.

No. Patients do not fail home dialysis—although it may well be that home dialysis has failed the patient. It is not the patient who should be seeking answers to why home dialysis didn’t work for them, but we providers, who should ask ourselves:

  • What could we have done better to adapt, convert, or support the patient at home?
  • What more could we have done to adapt to the changing circumstances of the patient, and deliver to the capabilities and/or wishes of the patient?
  • How could we have adapted our services, provided better in-home supports, offered/encouraged respite more freely when needed, or better sensed the “difficulties” signals?

It is easier for us to say “the patient has failed home care,” when it well may have been us our failure to recognize gap(s) in the duty of care—that prevented the patient from remaining where s/he so desperately wished to remain: at home and within the comfort of familiar surrounds.

Clearly, this sense of failure, either on our part, or from the family dynamic, does not apply to all home patients. Some will be transplanted, some will fall ill and be content or feel more secure if transferred to centre-based care. Some may indeed transfer by preference. Most will likely leave home willingly, when the time comes to do so. But, there are some home dialysis patients for whom home is everything.

Even those who do willingly move in-centre should be honored for their past home management by encouraging the continuation of as much self-care as possible within staffed surroundings—avoiding the onset of the greatest “diminsher” of all: learned helplessness.

Words matter. Not only have I heard myself uttering unfeeling “mis-speak,” but we all do it, all the time.

Variants of “Compliance”

Nothing appears to offend, raise hackles, or frankly anger a dialysis patient than to be labeled “non-compliant”. Nothing. In my view, too, non-compliance in dialysis is vanishingly rare. True, it does occur, but usually only in the setting of acute on chronic mental illness.

Henning Sondergaard, a clinical psychologist who has long been on home haemodialysis, listed the many words in his Thesaurus that are synonyms for compliant: submissive, docile, deferent, passive, resigned, adherent, tractable, obedient, acquiescent: none of which I would wish to be called—and nor does he! “…I refuse to be a passive, submissive, docile human being and resign my basic human rights,” writes Henning.

Perhaps most commonly, the term “non-compliance” is used to encapsulate the difficulty many patients have in managing the limits we try to impose on inter-dialytic fluid ingestion. But, if this is “non-compliance,” then it is a non-compliance driven by the short and brutal dialysis treatments we prescribe: short treatment time = rip off fluid at breakneck speed = drop blood pressure = revive with salt and water = seek hyper-contraction of the vascular volume in too-short a time = switch on the thirst mechanism = send the poor patient home, salt-loaded and with thirst maximally triggered.

I have blogged this toxic sequence before. Dori has also “de-frocked” compliance. So has Henning.

But beyond physiological non-compliance—something that is almost always the result of our poor practice, our ignorance, and not the fault of the patient—non-compliance has become synonymous with “difficult patients”; with those given to “tangential complaint;” with those who are “annoying information-seekers” (as if that is not their right, or place); and with those who time-consume. Sure, such patients can frustrate—of that there is no doubt—but an inquisitive patient seeking better understanding should be embraced, not ostracized. Yet, too often we do the latter.

Do I wear guilt here? Absolutely. Yet if or when I do, it is my responsibility as “the healer” to overcome my own shortcomings, and not blame the patient for being “difficult.”

Other disliked words

Many respondents resented jargon-speak platitudes:

  • Shared decision-making
  • Patient empowerment
  • Patient-centred care and patient-led care’

They described these as buzz or bingo words that mask a big-brother “pleasantness” that grates and sticks in the craw. There was a strong feeling that while these grab-bag terms were often used with good intent, it was also apparent that their real meaning was often obscure, and that they tended to appear like “…big red balloons, pompous and full of hot air.”

Some felt it was not so much the words used but an attitude, recognizing that a word-set may rest well for one but antagonize another. Attitude mattered to many more than did terminology, and that is hard to argue against. But, while attitude can depend on time, place and circumstance (we all have good and bad days) robust rapport between patient and provider, be it doctor, nurse, or allied health, will survive the odd fractious moment. A mutuality of respect matters.

The word (or concept) of “patronizing” was deeply discussed … although what seemed patronizing to one was not held offensive by another. It seems that patronization is much in the eye of the beholder. But a common thread was the unwelcome use of smiley or sad face dots often used by clinics to mark biochemical result sheets and other “doing well” or “doing badly” information. It was invariable that these were seen as first-grader, and insulting. A simple explanation of reasons for and strategies to address variance, or outlier status, is far better than a primary school set of stars, smilies, or thumbs up/down icons.

The phrase “end-stage” or “ESRD/ESRF” sparked much debate. In favor: it is written into legislation and thus difficult to remove without a change in legal terminology. Against: the term CKD was much preferred, with lower reaches of CKD designated CKD5, or CKD5D (for dialysis). Some proposed that CKD5T be used for transplantation, though my own sense is that a transplant is a transplant, and the designate of CKD is no longer is relevant. Certainly, ESRD was preferred to ESRF, as the ‘F’ refers to failure, and the concept of failure is disparaging for many CKD and dialysis patients…

And…one word of my own. I have my own pet bête noire of a word: “barriers.” The home haemodialysis literature is littered with it: barriers to this, barriers to that, when in reality, these so-called barriers are opportunities seeking solution. It is such a negative word; so off-putting. It imparts a sense of: “hang on, this is all too hard.” Negative talk invites a negative reaction, and negative reaction inevitably promotes inaction. How can a good modality grow and prosper if all that is talked about are the barriers that prevent implementation? Think opportunities, seek solutions, create and innovate new ways. Be positive. Barriers suck!

At the end of the day, what was apparent from this most edifying set of posts is that the simple request to nominate your pet word or phrase dislike unleashed a torrent of intelligent, thought-provoking, and emotive discussion. Roughly 175 comments accrued in less than 9 hours and would have continued but that I drew a line under them and said enough. The to-and-fro was invariably courteous, and devoid of rancor or spite, though it did reveal the depths of hurt and confusion that the words we sometimes use unknowingly inflict on our patients.

While the Home Dialysis Central FaceBook discussion group is predominantly frequented by US-based patients, I was able to identify a number of responses from Australasia and the UK—the tenor of which bore no clear difference, region to region, in the interpretation of the language used to discuss CKD and dialysis, provider to patient.

Home dialysis patients—clearly the population responding here—are a resourceful, intelligent group. They understand that the words we use, person to person, in any walk of life or endeavor can be poorly delivered or misunderstood, that is a joy and curse of being human, but that was not the issue that emerged. What was abundantly clear was that if any two words should be used with greater care—or, arguably, not used at all—they are compliance and failure. One is pejorative; the other de-values.

My gratitude to Dori Schatell for facilitating such an instructive exercise, and to the many, many patients who contributed to it.

Comments

  • Barbara Briggs

    Jun 6, 2018 8:43 PM

    First I would like to address the patient issue. I guess I would look up the definition of patient in the dictionary which states ONE WHO RECEIVES MEDICAL CARE. That to me should clear up that issue. As for Hemo- failure my opinion on that, I would be comfortable saying Hemo or home dialysis doesn't seem to be working for you. I also feel as though the patient or patients my be in denial and not really accepting the fact that they are a patient and they are sick, and sometimes positive words can change their thoughts.

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  • Teresa Grisham-Lee

    Jun 1, 2018 12:36 PM

    This falls in line with Fresenius desire for the staff to use empowering words instead of disempowering words.

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    • Teresa Grisham-Lee

      Jul 10, 2018 11:36 AM

      Words can hurt and words can heal.

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  • Gale Schulke

    May 11, 2018 3:02 PM

    I just gave a copy of this blog to everyone on my staff. We are going to discuss this at our next staff meeting.

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    • John agar

      May 11, 2018 6:32 PM

      Thanks Gail. I hope you will add the outcome of your Monday discussion - for and against - these sentiments, and let us all know if any ideas, other words, either in agreement or disagreement, arise.

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  • Gale Schulke

    May 11, 2018 2:52 PM

    John, your article really said a lot I have voiced. I, too, have failed to find a substitute for "patient", despite my best attempts to d so.
    I despise the use of the word "non-compliant" for exactly the reason you stated. I prefer to look to see what I, as the nurse, have done or not done to foster this.
    dialysis is hard enough without having a team willing to work with you.

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  • Kamal D Shah

    May 5, 2018 10:28 AM

    Great post Dr. Agar. Fully agree that words matter. At NephroPlus, the dialysis provider network in India that I co-founded, we call patients ‘guests’ and they really like that. That word may not be appropriate everywhere but in the in-centre setting, it does help to change some attitudes.

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    • John Agar

      May 7, 2018 7:08 PM

      Thanks Kamal

      To be honest, I don't have a descriptive term that works for the maintenance dialysis 'patient'.

      'Patient' is rather 19th/early 20th century. It is a submissive term, and it no longer fits - if it ever did - the modern 21st century mutual contract that is (or should be) the relationship between a recurrent service user and the service s/he uses.

      'User' rather implies a one-way 'take' from (or of) a static product - and dialysis is, or should be, a mutual contract ... a mutually shared endeavour and contribution from both the provider (the dialysis service) and the patient ... so, for now, I will continue to use the 'patient' word, even though it patently fails to fit or measure up.

      Mutuality of contribution and effort underpins - or should underpin - any recurrent service, like dialysis. Dialysis is not a one-off. It goes on .. and on ... and on ... though I don't need to tell you that ... until transplantation for the few, or death. We (as do others) have a number of patients in their fourth decade of dialysis - some stuttered by spent transplants, others effectively continuous ... 3+ times weekly x 4.5 - 5.0 hours/treatment (or 7 - 8 hours/treatment x 4 - 5 times per week if home nocturnal) ... into infinity.

      Dialysis is unlike any other medical endeavour - for either the patient or the medical team. So ... the best words to describe such a mutual life-defining relationship elude me still. Certainly 'patient' and 'user' aren't right.

      'Dialyzor' - favoured by some - is, to me, a rather 'ikky' term. I personally don't like it, but if it were to prove acceptable to the majority, I could live with it. But dialyzor sounds too 'medical' as a descriptor for a 'service' that commonly becomes more of an emotional and personal contract and dependency than a medical service - and one that works both ways, between patient and team.

      In this answer, I have used the word 'contract' ... but not as I used it in my comment below on 'behavioural contracts' for patients deemed - for whatever reason - to be 'naughty'. No ... here, I use it in the context of a contract of trust, belief, shared purpose, hope, and sometimes - or eventually - defeat ... but, these unique and signature bonds that develop over the months, years, and decades of dialysis between patient and team exceed the usual brief, or perfunctory exchanges of the clinic visit, or even the limited inter-relationships in most of the other specialties. While that is not always true, it seems to me that emotional bonds form in a deeper, more complex way over the decades of dialysis than they do in any other medical niche.

      Your suggestion, Kamal, of 'guest' doesn't work for me, either. ... for all the same reasons. Maybe - until some better term shines through - 'patient' or 'dialyzor' will remain the two most currently used terms, despite the limitations of both in describing the mutual pact that IS dialysis.

      Meanwhile, that 'right' word for 'me' to describe 'you' ... one that embraces the complex interpersonal relationship, bond, and interdependence that a dialysis 'patient' forms with his/her team ... continues to elude me.

      Any contributions are welcome

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  • John Agar

    May 5, 2018 1:22 AM

    One further word (or concept) has arisen in private discussion about this blog ... the use of the "behavioral contract". This unfortunate step usually arises when all rapport has been lost and, usually with an intent to cow and intimidate the patient into ‘compliance’ - that word again - it is seen as ‘necessary’ to prepare a paper trail that may absolve a service from responsibility should an involuntarily termination of care be exercised by the managing dialysis unit. The language of these contracts – which in fact are not contracts at all, but dictats, given that contracts imply an exchange of rights or powers between the signatories, and in this case the patients merely sign away rights rather than receiving them – can be chilling.

    Again, there is usually right and wrong on both sides as trust unravels to the point of quasi-legal (or is it illegal) intervention. Contracts rarely if ever work. They are certainly questionably legal - at least by that name. Importantly, their impact - for better or worse - has already been discussed in detail here at KidneyViews by Beth Witten ... https://www.homedialysis.org/news-and-research/blog/230-is-a-patient-centered-dialysis-behavior-contract-possible

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  • Elaine Brecher

    May 4, 2018 11:40 AM

    While I do agree with a lot of this blog, I must say after being a member of a home therapy facebook group that there are patients who are non-compliant and those who encourage not following doctors orders as to frequency and length of treatment. One person who seems to be influential to other members told one HHD patient to do four treatments each week which was what she wanted to do and lie to her doctor and clinic nurse that she was doing five treatments a week. That person suggested that patients might just do an every other night treatment and get by with it. I also have patients who come to treatment fluid overloaded every treatment and refuse to lower their intake of fluid and another who refuse to take binders with phosphorous high every lab draw. Education has made no difference. Syntax aside, what do we do so that patients understand these guidelines are to keep them as healthy as possible. Just lost a patient I cared very much about due to not taking binders or watching his diet. Regret not being able to reach him and change the outcome.

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    • John Agar

      May 5, 2018 12:51 AM

      I hear you, and purely from a health professional’s perspective ... you are right - there ARE those who, despite ‘us’ advising, pleading, doing, what we feel is medically correct, will not ‘comply’ with our view of their world. This leads to our frustration ... sufficient for our anger to spill over as we struggle to understand, or fail to, our failure to engage and capture the heart and mind of the (to us) contrary patient.

      But, we also need to accept - though it IS hard to, and we all fail this test from time to time - that patients DO have a right to listen, to evaluate, but to then ignore (if they wish) an intervention or interventions that we think sensible or essential. Here, one side (the professional) may label the response non-compliance ... the other side (the patient) sees only self-determination or the exercise of choice.

      There may well be right - or wrong - on both sides in this mutually unhappy circumstance ... but as long as we, as the professionals, have done our best to explain and - importantly - have offered and/or arranged a second opinion from another professional of the patients’ choosing, we need to be prepared to allow a patient to self-determine ... even if it cuts against our own better judgement.

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  • Emily Lees

    May 3, 2018 5:45 PM

    Great post. I am my husband's care partner for home hemo, and his nurse and I agreed that "patient" is not the right term. We finally settled on "stakeholder," although I think being in a clinic forces her to use the term which implies passivity and lack of ability to take charge of one's health (i.e,"patient.") I will not name the clinic, but I will add that they report results of blood work on a "report card" with smiley faces for levels within the normal range and frowning faces for those that are abnormal. I find this to be not only infantile and insulting but also an egregious case of victim blaming, as if the "patient" did something wrong! The doctors I have shown this to laughed and seemed to commiserate with us, but the nurse said that people doing in-center dialysis seemed to like it! If that is the case, they are in sad need of consciousness raising. My husband and I are both PhD.s and we resent being treated as if we were stupid. Ironically, I am a retired gerontologist with research interests in doctor/"patient" communication, but I have never encountered anything this bad!

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    • John Agar

      May 4, 2018 9:13 AM

      There is not a lot I can do to change your local attitudes, Emily, but perhaps the best I can suggest is that - like some others have said they would do - you print this off and take it as a discussion start-point with your unit team. You may need to start low-key. Be non-confrontational ... hold just a ‘for interest’ discussion ... along the lines: “I read this piece on the internet, and it stuck a chord. Others I have spoken to also feel atuned to some of the sentiments the article raises ... indeed, so too do I, now and then. Would you do me the honour of reading it? Maybe we could even have a group discussion with others, to see if they sometimes feel like I do” Obsequious no, but approaching and approachable, yes. Its worth a try. Seek raprochment, equality, patrnership in your care. Crash, bang may not work. Just suggesting ...

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  • Jeanne Dillon

    May 3, 2018 10:19 AM

    This is a GREAT post. I myself am a poet and recognize the power of words... thanks so much for this!

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