Dialysis: “Prescription”—or “Pact”?

This blog post was made by Dr. John Agar on November 14th, 2019.
Dialysis: “Prescription”—or “Pact”?

I think I may have gone a little rogue today; an Australian expression for “off piste” or out of left field...

I was co-chairing the last afternoon session of the ASN on Home Dialysis—a session in which a Canadian presenter (whom I much admire and respect) had been given the task of talking about “the dialysis prescription.” The topic was not his choice, rather it was simply the issue he had been asked to discuss.

But, as he moved through his presentation, the word prescription kept recurring and, I must confess, when applied to dialysis, prescription has always made me see (a teeny bit) red.

Prescription is a word much in favour in the dialysis world but, to me, while it may be a fair and reasonable word to apply to a pharmacy request for a pill or a potion, it is not a good word use for the complex interactions that guide and seek optimum dialysis outcomes.

Prescription implies a top-down order.

Prescription implies a sense of “this is the treatment you are going to get—so get used to it.” It risks overweighting medical theory while underweighting practical patient lifestyle expectations and their capacity to “comply.”

Man, Coat, People, Laboratory, Lab, Glass, Liquid, Blue

I don’t think that is quite as it should be.

Finding the best dialysis at any given time for any one individual requires a parley, a pact, a treaty, a discussion, an agreement...a two-way conversation between the professional—be that doctor, nurse, or social worker—and the patient.

Agree, Agreement, Asian, Black, Business, Commerce

Optimum dialysis is not just Kt/Vurea (or whatever other metric the professional seeks) but must seek to link medical aims and expectations with the lifestyle interests of the patient and their immediate family, understanding and accepting the pragmatic impacts dialysis may exert on these key patient imperatives.

Good dialysis—and the path to it—should seek flexibility and be prepared to permit give and take. It should seek equilibrium: a balance between the best clinical, biochemical, and symptom outcomes the professional can deliver, but at a price—not in dollars but in commitment—that each individual patient can accept, follow, and live with.

This may not equate to the professional optimum. Rather, a dialytic pact should be able to mould and shape to changes in individual patient circumstance, even if those changes mean sacrificing the strict rules of best-practice medical orthodoxy. Finally, it should always be patient-centred, or, better, person-centred, as Edwina Brown so eloquently stated in her presentation in the same session where she eschewed the designate “patient” in favour of her preferred designate, “person.”

Grandmother daughter gardening

I sense eye-rolls and sighs. For too many, this observation may seem to be hair-splitting, unnecessary, or simply pap, or rubbish! But...I don’t think so.

Words matter.

Words convey differences in emphasis and intent; differences between imposition and agreement, between “you will do,” and “I can accept.”

In this instance, the word prescription implies an order. It excludes negotiation, flexibility, and circumstantial variance. Let us all try to be less “us and them,” and more “we” as we try to lead each other —professional and patient (or Edwina’s “person”) alike—through the complex interactions between optimal medical physiology and practical lifestyle factors. For in the end, good dialysis is a complicated dance...and it takes two to tango!

Let’s try to find a softer word or phrase that connotes “partnership.” I kind of like dialysis pact. But will “pact” catch on? Probably not!

What I do hope is that this short blog may lead us to think just a little more about the words we use, and whether we always choose the best ones.

Comments

  • Bill W

    Nov 18, 2019 10:34 PM

    I could care less if it's a script kr a pact. What's imortant in this person's eye, is bringing the patients into the big picture. All patients sbould be made to feel like they are an intrigal part of the treatment. Educating your patients on their treatment and all the functions of the machine would serve a dual purpose. It would allow another set of eyes to ensure hookup and run parameters meet both the clinic's needs and the patient's needs.

    A discussion should always take place between the tech and patient. Weight information needs to be exchanged and a negotiation begins on how much fluid to remove. It should be a simple subtration, incoming weight minus dry weight. Often though, noncompliance to fluid intake causes this number to exceed personal or clinic mandated MAXIMUM fluid removal calculations.
    Some patients find the 13mil/kg/hr formula too high and adopt one that works for them. I personally prefer a 10mil/kg/hr formula. It better guarantees good runs for me, the patient.

    Another component of dialysis the patient needs flexability on is pump speed. Pump speed should be a reflection of clearances. Since every machine calculates kt/ v values and records them from run to run , a history can be drawn and used optimize pump speed adiquate cleaning and patient comfort. Why run a patient at 450 mils per min if they have a kt/v of 2.0 and are continually complaining of feeling like crap for two days after dialysis. It makes sense to slow the pump down to a more reasonable number, helping the patient feel better and still achieving acceptable clearance numbers.

    Until all patients in-center receive this kind of freedom to control their runs and their lives, there will always be excessive heart failures, fistula and graft failures. There will be patients leaving dialysis in pain and discomfort needlessly.

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  • Linda

    Nov 15, 2019 12:55 PM

    While I understand your sentiments regarding the word "prescription" I think the real issue is the dynamic between physician and patient (or person). If the patient perceives a prescription as an order to be followed without question it little matters if it's called a prescription or a pact. If instead, that prescription is regared as a recommendation or suggestion by both sides a prescription can easily be a pact.

    When I was a floor nurse we followed physician's orders. But we didn't follow them blindly. We used our own critical thinking skills and questioned those orders that were questionable.

    As a patient I look at prescriptions as recommendations. If they work for me I accept the recommendation. If they don't I discuss it with my team. I play with my BP meds because my BP is erratic at best. Likewise, I play with my dialysis prescription.

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    • John Agar

      Nov 17, 2019 5:58 PM

      I guess my 'beef' with the word is the all to often 'immutability' of a prescription ... the 'write it, follow it, and don't think about it further' aspects that too often attach to top-down approaches. The patient should be drawn into the discussion. Prescribing implies order and regulation, not flexibility and individuality. To me, that's OK for a pill, but its not such a good idea for the multi-faceted moving feast that is dialysis. Flexibility in treatment : time, frequency, rates of flow, the interpretation and variance of ultrafiltration rate (read dialysis duration) to suit circumstance ... all these need slow, gentle, and patient explanation and confidence building such that patients, their carers (whether at home or at the chair-side in facility-based care) all come to realise that no two dialysis patients are alike ... indeed no two dialysis sessions are ever quite the same ... and a set prescription fails to give the leeway and maleability to adapt to change. Again, all these are just words ... but words do help us to craft the correct approach.

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  • Cathy

    Nov 14, 2019 8:03 PM

    Hi Dr John,
    I’m a dialysis nurse and I’m interested in knowing what parts of the Dialysis “prescription” you would like to negotiate with the Nephrologist.
    Time, dry weight, blood flow etc.
    I know the Doctors I work with are quite concerned with outcomes. The Government has them held over the fire.
    They will work with the patients on certain aspects of the treatment. But when it comes to KT/V and Fluid removal limitations it’s quite cut and dry.
    Thanks Cathy.

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    • John Agar

      Nov 17, 2019 6:12 PM

      Dear Cathy
      to be honest, I don't think it is (or should be) quite as cut and dried as all that. For example, Kt/V matters not a whit if you are on long, slow, frequent, overnight, home dialysis. Indeed as urea clearance is maximal at the start and diminishingly valid as the dialysis duration extends. It is also a nonsensical metric for people who are on (say) 2-3 hours x 5-6 sessions a week - or whatever variation of short daily you wish. Kt/V is largely pointless, yet some jurisidictions remain rigidly (and sadly) in its thrall. As for fluid removal limitations ... my whole point is that there ARE no 'cut and dried' rates of fluid removal that can be applied across populations. I have blogged many times on this - yet 'fixed', or 'minimum', or 'recommended' UF numbers are thoughtlessly and - dare I say it - recklessly applied without thought to circumstance ... or to better ways to regulate volume removal (ie: through elongations of the treatment duration). So, while I am chuffed you have responded to my blog, the premise that you have been told that Kt/Vurea and/or fluid removal rates are 'cut and dried' ... ie: that they can ever be thought to be immutable within a prescription or a regulation ... is at the core of the war I wage.

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    • Beth Witten

      Nov 15, 2019 3:01 PM

      I love this article. I strongly believe that in all U.S. healthcare, not just dialysis, it is our responsibility to fully inform the person about his/her disease/condition and encourage him/her to participate in care as fully as desired. Instead of calling it a "dialysis prescription," we can call it a plan for treatment and as the regulations require, expect the patient to an equal member of the team. To develop a good plan, physician and other staff need to solicit and pay attention to the expressed limitations and goals of the person who must do the treatment to survive. They need to accept that they can't control anyone else's actions 24/7. I think duration and frequency of dialysis are most important when attempting to remove enough toxins and fluid while avoiding organ stunning. I suspect "dialysis prescriptions" that are cut and dry and not individualized to the person lead far too many of those we treat to have poor physical and mental functioning that put them at risk of hospitalization and death.

      In listening to people on dialysis, it is not an easy life, not even when you do it at home. We don't need to make it harder by downplaying their concerns, getting defensive if they ask questions about the care provided, and regularly criticizing them if they don't blindly obey our rules. Words matter and it's important that we choose our words and actions wisely.

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      • John Agar

        Nov 17, 2019 6:22 PM

        Dear Beth

        Thanks for your endorsement of my sentiment, here. 'Plan' works for me ... sort of ... though even 'plan' trends to prescription rather than to individualisation ... so, if it is to be a plan, ensure it is an individual(ised) plan!

        Your comment ... "I think duration and frequency of dialysis are most important when attempting to remove enough toxins and fluid while avoiding organ stunning. I suspect 'dialysis prescriptions' that are cut and dry and not individualized to the person lead far too many of those we treat to have poor physical and mental functioning that put them at risk of hospitalization and death" ... is spot on and is why I have chosen to challenge the term 'prescription. Time (sessional duration), frequency (sessions per week), and through these two, ultra-filtration rates at last below 8 ml/kg/hr (and, even better, far less) ... these are what matter.

        As for ... 'listening to people on dialysis .. not mak[ing] it harder by downplaying their concerns, [or] getting defensive if they ask questions about the care provided, and regularly criticizing them if they don't blindly obey our rules' ... again ... spot on.

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  • Henning Sondergaard

    Nov 14, 2019 7:41 PM

    John,

    What a great and relevant subject. Thanks.

    ‘Prescription’ in dialysis is up there with ‘compliance’ as a concept and ‘patient’ as a descriptor for a human being – not to mention ‘ESRD’ or ‘ESKD’ as I see more and more while thinking “It was never really the ‘R’ I had a problem with but the ‘ES’. But hey, things are moving in the right direction. They are all words and concepts that maintain a power inequality that some of us are working diligently to break down. But I also have to say, I think prescription is very much a North American issue. In Europe I hear much more about frequency and duration when talking about the weekly amount of dialysis. So maybe things are changing slowly.

    As a home patient I find the idea of a prescription ludicrous. I am the one in charge of my treatments making me my own primary healthcare provider. My doctor functions as a consultant whose knowledge I’d be dead without. And yes, we agree how much dialysis I should do and on top of that she prescribes the medicine I need. But there is a significant difference between the two. I do X number of hours per week on Y number of days. But if Friday is my usual dialysis day and my buddy has a birthday party Friday, I prepare for that so I can take the day off. Then I might have to spend my weekend doing some long sessions because the beer was a bit too tasty at the party and I need to get rid of the extra fluid in a proper manner. So on Monday I draw my labs and they are particularly good this time because I sinned on Friday and made up for it Saturday and Sunday (true story)

    If I had blindly followed a set prescription, I would have either been miserable because I couldn’t go to my friend’s party and mess up my schedule or I might have cheated and gone to the party, feeling miserable all weekend because of a missed treatment. The choice would have been between mental misery and physical misery. That is not a life, imho, that is torture.

    Let’s forget the idea of patients adhering to a dialysis prescription as if they were lab rats, hoping they comply so their healthcare professional can feel they did a good job and someone listened to their infinite wisdom. Let’s work together as human beings who are equals, dealing with an insidious disease that we need to fit into the life of an individual who has many other priorities that also need consideration. That requires balling up the prescription and tossing it in the bin while sitting down and hashing out how we can work this thing, so it suits the person doing the treatment. It’s really not that difficult.

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    • John Agar

      Nov 17, 2019 6:26 PM

      Henning ... as ever, you are on the money - though it never surprises me that we agree on pretty much all - you as an experienced patient, me as a (hopefully still) learning nephrologist.

      I do like the mental picture you paint of ... 'balling up the prescription and tossing it in the bin while sitting down and hashing out how we can work this thing, so it suits the person doing the treatment'.

      You Danes do manage to get so much of life right, you know,.

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    • Cathy

      Nov 14, 2019 8:32 PM

      Hi,
      Your description of the flexibility in Home Dialysis is the reason everyone should consider giving it a try. There are so many rules and regulations in in center dialysis. As a Nurse Manager of a large unit, I see the frustrations on my patients faces at yet another order being barked at them. There is a cookie cutter approach to delivery of care.
      Patients are not encouraged into the process. It’s a fit in or go elsewhere feel sometimes. I wish more patients would become involved with their plan of care. Most patients just sign there Careplan without meeting with the team. I’m so excited when a patient wants to meet and bring there family in to help in the process.
      We are making some strides. One thing we now say is adherence to treatment instead of non compliant. What are some other trigger words and thoughts we as staff might incorporate in our discussions with patients. How can we make our care conversations more of a discussion than an order. We have all been trained in the error of we the MD or RN give the directive and hope the patient takes it. We were not taught to be partners in care. I hope training has moved away from that theory.

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      • John Agar

        Nov 17, 2019 6:30 PM

        Dear Cathy

        Reading your comment, coming as is is from a facility-care setting, gives me hope that others, too, can take a more flexible approach, tossing the word compliance into the same 'bin' as Henning used for his prescription (see above), and looking at each patient as a living and changing individual. not one to be squeezed into a 'global' prescription ... as way too many are.

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  • Jeffrey Perl

    Nov 14, 2019 7:38 PM

    I am that Canadian nephrologist! Unfortunately, I had been given perhaps a less than optimal talk title to convey how much of a huge proponent I am of developing a care and treatment plan for those in need of home dialysis that always follows the principles of shared decision making, setting realistic goals, in an effort to achieve high quality care. I

    I hope that my lecture conveyed that we need to put the individual and care partner at the forefront of how home dialysis is delivered and the need to individualize each person’s treatment plan to help facilitate an experience that acknowledges and minimizes the tremendous burden, illness intrusiveness and fear for individuals and their care partners that so often accompanies a diagnosis of kidney disease that requires dialysis or a transplant.

    The nomenclature that we as nephrologists have been dealt with from our more senior predecessors, undoubtedly spirited by good intentions such as dialysis ''adequacy'' ''PD prescription'' and peritoneal dialysis ''technique failure'' certainly is due for reconsideration. Firstly, we don't want to deliver just adequate dialysis we want to deliver high quality care and I propose the term be abolished from the nephrology lexicon. Perhaps prescription implies a power dynamic between provider and the individual receiving treatment and Dr. Agar I would very much welcome a new term proposed by you to encompass the method and mode by which the initial home dialysis is delivered at home. As for PD technique failure, starting on PD and transition to another modality may simply be the natural history as part of a lifelong plan of integrated care. ‘’Failure’’ to describe every transition from PD to another modality implies that either the therapy failed, the patient failed, or perhaps we failed the individual as a treatment team. For example, allowing an individual to experience several years on home dialysis with a change in the life situation necessitating a transition to an alternate treatment option should not be viewed as a failure but a success in my opinion.

    Your comments I hope herald a new era in nephrology where we are more thoughtful in how we communicate with persons and care partners and where the language we speak and the terminology that we use is as patient-centred as the messages that we hope to convey.

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    • John Agar

      Nov 17, 2019 6:38 PM

      Dear Jeffrey

      I am so please you wrote in! I hope you didn't think me unkind asking you this same question (re 'is prescription' the right word') after your excellent presentation ... and yes, it was absolutely clear that your talk was ALL about ... 'put[ting] the individual and care partner at the forefront of how home dialysis is delivered and [emphasizing] the need to individualize each person’s treatment plan to help facilitate an experience that acknowledges and minimizes the tremendous burden, illness intrusiveness and fear for individuals and their care partners'.

      The problem was that I suspect there were many in that vast room for whom that message was new, or too infrequently played. My question sought to draw an concept underline from you ... and you got the hint, and duly underlined! My thanks.

      As for ... 'a new era in nephrology where we are more thoughtful in how we communicate with persons and care partners and where the language we speak and the terminology that we use is as patient-centred as the messages that we hope to convey' ... if only!

      So ... let us both keep battering at the ramparts of thoughtless dialysis. Who knows, maybe one day we'll win.

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  • Sandra Walker

    Nov 14, 2019 4:36 PM

    Well said. It's like, as a 'patient' I feel that I can say to Drs that I will keep their advice for further consideration .

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    • John Agar

      Nov 17, 2019 6:49 PM

      Thanks, Sandra. Unfortunately (and too often) patients are not included, information and possibilities in care are not shared, and what we (the professionals) do is thought to be too complex, too difficult, and too 'medical' for our patients to 'get'. Not so! We need to take the time and patience to 'let our patients in' ... and again, here, words matter ... simple, easy-to-use words ... and it can be surprising how much a professional can learn and better understand if he/she can master the art of easy explanation.

      It's all about 'pact', 'partnership', 'treaty', 'agreement', 'discussion', and 'explanation' and far less about 'regulation', 'recommendation', 'prescription', and 'order'.

      If we could all 'get' that ... what wonderful progress we could make.

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