Compliance is a Dirty Word

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on August 28th, 2014.
Compliance is a Dirty Word

When I was an undergrad psychology major, zillions of years ago, we learned about Philip Zimbardo’s classic experiment where he created a prison and, with a flip of a coin, made half of his volunteer, mentally healthy college student participants inmates and the other half guards. With an instant power differential, the “guards” immediately started to harass, punish, and even abuse the “prisoners”. i One lesson? A power differential can be a dangerous thing. And, requiring “compliance” in healthcare instantly creates such a power differential.

In the past 5 years or so, I’ve heard a lot about patient-centered care and patient engagementin kidney care. AHRQ describes patient-centered care as “relationship-based, with an orientation toward the whole person.” ii It incorporates patients’ values and preferences. The term “patient-centered care” does not appear in the ESRD Conditions for Coverage. But, there is a mandate for dialysis clinics to involve patients in their care and plan of care as much as they’re willing to participate. Staff are required to honor patients’ rights—including the right to refuse treatment, which can be interpreted as choosing not to “comply”.iii

Patient engagement is…well, it’s tricky to figure out exactly what it is, since there are so many definitions. But, patient engagement has an element of active and meaningful participation of patients and families in decision-making, policy development, and “engagement in one’s own health, care, and treatment.”iv

Demanding Compliance is Not Providing Patient-Centered Care

Despite the new patient-centered and patient engagement rhetoric, at the end of the day, though, the question still seems to be, “ how do we get patients to comply?” “Non-compliance” is a term I hear frequently (and pay-for-performance has a disturbing element of cherry picking that can make it hard for “non-compliant” patients to receive care)—but compliance and patient-centered care are opposite ends of a spectrum.

Here’s why: “compliance” (with synonyms like: assent, acquiescence, docility, obedience…) arises out of a disease-based, “Medical Model” in which “dis-ease” is acute and either self-limiting or fatal; treated with medicine or surgery in a clinical context that ignores the patient’s belief system or life priorities. The staff’s job is to be the medical experts. The patient’s job is to seek good care and comply. When we use this model and someone’s kidneys fail, our only consideration is treatment, and other aspects of life—from child or elder care to education, work, or travel—don’t really matter and are rarely (if ever) even asked about.

Patients are labeled “non-compliant” when they choose not to—or are not able to—follow their treatment plans . Over the years, I’ve heard stories like these (and so have you):

  • A parent insisted on getting off of the machine early at each in-center treatment.
  • A patient didn’t take his or her prescribed blood pressure medications.
  • A patient came in 6 liters fluid overloaded

In the first case, the patient chose to leave early so he could meet his small children at the school bus. No one had asked him which treatment slot would fit his life, so he did what he had to do to be sure his little ones were safe. In the second case, the patient could not afford all of the prescribed medications, because he lost his job. In the third case, the patient did not understand how dialysis worked and why she should limit her fluid intake, when it was summer and she was thirsty.

The Medical Model Doesn’t Work with Chronic Illness

Chronic kidney disease is a chronic disease. The Medical Model doesn’t fit, because there is no place in it for patients to take an active role—yet the job of someone with a chronic disease is to self-manage (not comply), and self-management is a far bigger job than just compliance. Self-management includes maintaining safety and reporting symptoms, for example, in addition to following a care plan that patients develop in consultation with their care teams. Fortunately, there is a Chronic Care Model,v which looks like this:

The chronic care model

As you can see, better health outcomes are produced when informed, activated patients work productively with a prepared, proactive practice team. Does that sound like compliance? No! I think it sounds like self-management, with the care team coaching patients so they can understand why they might want to follow their care plans, and have the tools to do so.

Using a disease-based, Medical Model, “compliance” approach fails patients, because they are people with their own often complicated lives, and focusing solely on the clinical means we deliver care that doesn’t support their values or meet their needs. vi Then, we are surprised or even angry when patients don’t do what we want them to do. The reality is, most of us would not be any better at compliance than our patients are—and for many of the same reasons. As adults, we don’t like being told what to do. We appreciate being asked to contribute our ideas and wisdom. We like being asked what will and won’t work for us. We might prefer to be the guards and not the prisoners, but at the end of the day, it’s best if we are neither.

How to Provide Care That Is Patient-Centered

When you want to figure out how to engage someone in his or her own health think about YOURSELF first:

  • How does it make you feel when you need a follow-up medical visit, and a desk clerk hands you an appointment slip without asking you about your schedule?
  • How important is it to you to know why you should do something—not just what?
  • Do you like to have your health care questions answered, or dismissed?
  • How well do you do with exercise? Your diet? Your New Year’s resolution to drink or smoke less?
  • Is your blood pressure or blood sugar in the target range? If not, are you taking steps to control it?

I’m sure you can see where I’m going with this. To be truly patient-centered, we need to ask patients about their values and preferences and then honor those. We are all human, and life can interfere with our best intentions sometimes. Rather than chastising patients, think about what you might want if it were you. Empathy and understanding about the difficult changes that may be required? Better information tailored to your language, reading level and learning style? Respect? A chance to vent? Instrumental help to overcome barriers (such as free medication samples or a shift time or treatment type to fit with life outside of dialysis)? Find out, meet those needs, and you are likely to find that more of your patients collaborate with you to produce better health outcomes for themselves—they become engaged in their care when you show that you care.

So, what can we say instead of compliance? I prefer “ follow the treatment plan .” And, for “non-compliance”? How about “ our team’s failure to engage someone in self-management”— or “ someone is exercising his or her right to refuse care .” Dialysis clinics—in-center or at home—are not prisons. Collaboration has the potential to boost health outcomes more than coercion ever will.

iii Part 494 Conditions for Coverage for End-Stage Renal Disease Services Interpretive Guidance, Interim Final Version 1.1, October 3, 2008, http://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/GuidanceforLawsAndRegulations/Downloads/esrdpgmguidance.pdf accessed August 27, 2014

iv Gallivan J, Burns KK, Bellows M, Eigenseher C. The many faces of patient engagement. J Participatory Med. 2012 Dec; (4):e32. http://www.jopm.org/evidence/research/2012/12/26/the-many-faces-of-patient-engagement/

vi Green AR, Carillo JE, Betancourt JR. Why the disease-based model of medicine fails our patients. West J Med. 2002; 176(2):141-3

Comments

  • Tammy

    Sep 29, 1:26 PM

    I , too, hate the word compliance. Yet so much of how our clinic is judged and rank is determined by how well patients adhere to diet, medication and treatment. As practioners, we are constantly pushed to get our patients' numbers to line up with the company goals, even if the patient states these are not their priorities. We are financially rewarded for getting patient to "comply". You can see the difficulty this creates for both patient and healthcare worker.

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    • Dori

      Oct 5, 3:01 PM

      Hi Tammy--I do see the difficulty of being caught between patients and company goals. A fairly common example is fistulas: companies will set a target, and patients can be harangued, begged, and bullied to PLEASE get to a surgeon and get a fistula made so we can tick the box--even if, like one woman who comes to mind, they are caring for elderly patients while recovering from a major surgery themselves--AND doing dialysis. Sometimes, the company just WILL NOT win. But, that said, the chances of bringing patients around to value what you (or the company) do is still going to be best if you find out what matters to them and meet their needs first. WIN their cooperation by showing that you care and that their needs matter. You can get to the same place, sometimes, just by taking a different route.

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  • Elaine Cole

    Jan 1, 1:15 PM

    I agree completely with this article. I strive to never, ever use the non-compliant label. Instead I say things such as "they are struggling to make the life style changes their ESRD status necessitates" or their priority for their life is not the same as ours is for them.

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  • Judy Weintraub

    Sep 23, 8:43 PM

    BRAVO, Dori! The term "compliance" has always felt demeaning to me and I have mentioned this in my talks frequently over the years. How can people be expected to manage a chronic health issue well if it's set up to sound as if people are obeying. The implications are simply undignified. I do my treatments gladly for my own body's sake, not to please any medical person. Thank you for using your talents to help bring the locus of control and power back to the individual.
    PS ...and a tip of the hat to you as well, John, for illuminating the saline issue among other things...

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  • Henning Sondergaard

    Aug 30, 1:13 PM

    Great piece, Dori!

    I think that the main problem is the treatment system views the 'compliance conundrum thus:

    Compliant patient=Good patient
    Non-con-compliant patient=Bad patient

    Thereby putting all the responsibility on for the care plan and it's adherence on the patient when in reality they should look inward and ask: "What can we do to make the relationship with the patient better so we can have a shared understanding?"

    I also firmly believe that there needs to be way, way more peer-to-peer learning in dialysis settings. I have great doubts that the drastic changes that are needed are ever going to happen top-down, regardless of all the good intentions from professionals. After all, none of us are truly able to put ourselves in the other person's place and have the necessary understanding of what they feel or think.

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  • David Rosenbloom

    Aug 29, 2:01 PM

    They called it “compliance.” I called it common sense. I didn't want approval or pity. I wanted respect and education about my condition so I could better cope with it on my terms. I paid attention to what they had to offer, and most of it was valuable in maintaining my health until I could get a transplant.

    At least, let’s change compliant to “cooperative.”

    Great piece, Amy!

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    • Dori

      Nov 5, 7:51 PM

      I like "cooperative"! That's a really good suggestion. If I could wave my magic word wand over KidneyLand, I would change that. :-)

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  • Gale Schulke, RN

    Aug 29, 1:47 PM

    I, like the rest of you, HATE the words non-compliant. It is undignified and assumes that the person has no choice and no rights. It is the same reason why I try very hard not to use the word "patient" when dealing with chronic illness. I prefer the use of client. It says what I mean...I work for you. By changing the verbage, we start to change the concepts. This is one of the reasons that Home dialysis is such a big deal. It puts the dialysis back into the hands of the person with the illness.
    My take on this is that my job as a Dialysis Professional is to teach and guide. It is, also, to LISTEN. You learn so much just by listening. Schedule changes can be made, referal to home modality can be made, adjusting the prescription to meet the needs of the person can be made. I wish we had the option to allow people to customize their in-center experience more. For example, the person with the small children could dialyze 4 short days instead of 3 long ones.

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  • Amanda Wilson

    Aug 29, 9:21 AM

    Back last year I attended a patient conference where a nephrologist asked for his opinion on his planned management for preventing burnout. It had the word 'mandatory' in the title and I assumed that this was they way that the program would be presented to patients. I objected to the use of the word 'mandatory' and was ridiculed on a couple of occasions for being childish for my objection. Whilst I admired the fact that he was trying to address this issue, there was the implicit implication from the use of this word, that he perceived that he and and other medical professionals were in charge of care without consideration of patient involvement. Sometimes, just the way that care is presented is enough to put up barriers and it is a shame that this particular doctor chose to ridicule rather than listen.

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    • Dori Schatell

      Aug 29, 1:12 PM

      I agree, Amanda. Certain words, like "should," "must," and "mandatory" get people's hackles up unnecessarily. Why put up barriers if we don't have to?

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  • Angela Body

    Aug 29, 12:03 AM

    This is definitely a thought provoking article, extremely well written. I will share this article with my staff.

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  • Miriam Lippel Blum

    Aug 28, 11:53 PM

    To Dori and John --

    Amen! you both hit the nail on the head regarding "compliance." One gets a child to comply, and only Scotch tape adheres to anything. Most of us with CKD5 are neither children, nor sticky tape. We wish to be treated with respect in regard to our care and included in the guidance of it. Just as no nephrologist would accept for themselves the dialysis care they blithely dispense to most of their patients, neither would they tolerate the disrespect.

    I had to fight hard to survive my 20+ years on dialysis. The worst part is when your self-esteem and will to take care of yourself is undermined by the system meant to help you. Furthermore, to represent as "quality" dialysis treatment that is clearly only optimal for the bankrolls of the for-profit companies and not the patients, is shameful.

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    • Dori Schatell

      Aug 29, 1:11 PM

      "Only Scotch tape adheres to anything." I love this! I had a call this afternoon where we were discussing compliance, adherence, and self-management--and the term that was suggested instead is "concordance," which comes out of a British model. Here's a link to a PDF article about its use in diabetes. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2563412/pdf/507.pdf

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      • Miriam Lippel Blum

        Sep 1, 12:11 PM

        I think "concordance" sounds like something having to do with the sweet wine we use on Passover! LOL. But I like the concept of there being mutual agreement on the course of treatment. I also like David Rosenbloom's suggestion of " cooperative".

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  • John Agar

    Aug 28, 10:40 PM

    Dori ...

    As you will know, I have also written MUCH about the use (and abuse) of this rather 'malignant' word - as it is applied to dialysis patients - in many of the answers I have given over the years on the HDC HD forum pages. Indeed, I think I wrote a blog some months ago here, on fluid management and its impact on patient 'compliance'

    I agree with you entirely that most patients judged to be 'non-compliant' are not so at all.

    Much of the 'non-compliance' that is opined by dialysis staff arises from the restrictive, inflexible and unkind dialysis prescriptions they impose on their patients, and not the patients themselves. The dialysis sessions that are so often prescribed are so short, and so brutal, that they induce unbearable dialysis-related symptoms and force patients to 'appear to misbehave'. However, these so-called non-compliant patients are simply reflecting the sub-optimum dialysis they are receiving.

    Or, as you so clearly point out in your example of the parent who is judged 'non-compliant' insists on coming off early to (quite fairly) collect a child after school, the dialysis 'system' has failed to listen to the lifestyle issues all patients face and must juggle around their dialysis program.

    But, far too often, and central to the concept of 'poor dialysis', is the short, hard, brutal dialysis that seems still to be prescribed so frequently in the US. There seems to be a lack of understanding that ...

    ... short and infrequent dialysis begets the need for rapid fluid removal:

    ... that rapid fluid removal begets intra-dialytic hypotension (i.e. a 'flat'):

    ... that 'a flat' begets the infusion of resuscitative saline to treat the hypotensive event (and saline = the very antithesis of the intent of dialysis which is to remove to remove salt and water):

    ... that this same rapid fluid removal begets rapid and acute intra-dialytic contraction of the circulatory volume:

    ... that acute volume depletion flicks the 'thirst switch' ... that irresistible, primal survival reflex that resides deep within in the brainstem ' ... to 'on':

    ... that, feeling lousy and hypotensive, with their thirst reflex switched to 'on', and with a load of extra saline on board, the patient staggers home and drinks like a fish to slake the irresistible thirst that their poor, short, brutal, badly prescribed dialysis induced.

    ... that, when he/she returns, several kilos too heavy, for the next dialysis, the patient struggles to cope with being labelled as 'non-compliant', and being scolded by the dialysis nurse for something that was not in their power to control.

    This is the face of non-compliance that angers me most. It is we who are at fault, not the patient. It is our task to provide the solution, and not the patient's task.

    To be sure, we need to better explain to the patient the concepts that underpin the rate of fluid removal and why longer dialysis provides better and more tolerable dialysis. We seem to manage to do this quite easily in Australia and New Zealand - where dialysis times are still progressively lengthening , despite already at a national mean of around 275 minutes (compared to the US of around 210) - so why not in the US.

    Compliance is another word for good dialysis. Non-compliance equates with poor dialysis.

    Enough said.

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