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    March 15, 2009

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    Dori

    Peter, even the word "noncompliance" arises out of the "medical model." This model is well-suited for acute illness--and is the paradigm doctors are taught in medical school--but it is a poor fit for ANY chronic disease, including ESRD.

    Folks with a chronic disease don't comply, their job is to SELF-MANAGE. Self-management encompasses having input into the care plan and then following it, managing and reporting symptoms, and maintaining safety. All of this is FAR more complex than "compliance," (which would seem to imply that a care provider is at your side every moment, monitoring your every move. Not true!).

    Self-management requires education--and not just facts, but motivational education that helps you figure out what to do and HOW to get yourself to do it. In the Chronic Care Model (http://www.improvingchroniccare.org/index.php?p=The_Chronic_Care_Model&s=2), this education is an essential component of care. In the acute, medical model, on the other hand, education is a "nice to have" add-on that may consist of the occasional trifold brochure or video.

    Why don't folks take action to follow their care plans? Because our system of care delivery doesn't have any place for systematic, well-executed, motivational education--and without, their hands are tied. How are folks supposed to know WHAT to do or WHY it's in their own best interests to do it? For the most part, we don't teach them! This is exactly the reason we built Kidney School (http://www.kidneyschool.org).

    On another note, if it's been 2 years, Peter, what's the hold-up? Why aren't you home yet? Have you considered switching to another clinic that will get you home while you still feel well enough to go through the training?

    Peter Laird, MD

    Kaiser has done well with usual care dialysis overall, but still only one NxStage program in Southern California in LA. I am next on the wait list and have already had my home visit. I could go with the Baby K now after FMC settled their lawsuit with Baxter a couple of months ago, but that would leave me at the mercy of outside units for any travel even to see our children. I never want to grace the doors of another unit again if I can help it. So, hopefully within the next few weeks, I will be at home learning all the aspects of the NxStage.


    Peter Laird, MD

    Dori, I was more familiar with noncompliance actually tied to chronic disease management than the acute care setting. I believe that is the more common usage of the word in medical terms. Certainly patients that don't take medicine for an acute illness fall within that as well, but most of our patients that we would call noncompliant were in the chronic disease state. So, in many ways, the self management that you are discussing would actually fall within my concept of noncompliance with care as we saw in actual practice.

    Certainly, in all aspects of my career, I have been fortunate to have had access to excellent education assets for our patients. As an example, our diabetic education at Kaiser is simply phenomenal if patients will take advantage of it.

    Here is the definition online that is actually in line with my experience and understanding:

    The term "noncompliance" is used in medicine particularly in regard to a patient not taking a prescribed medication or following a prescribed course of therapy. For example, "As many as half of 'failures' of treatment to bring elevated blood pressure down to normal levels may be due to unrecognized lapses in taking antihypertensive drugs as prescribed, according to a new study by a team of researchers from the University of Lausannne, Switzerland." (Stephenson J, JAMA 282: 313, 1999)

    http://www.medterms.com/script/main/art.asp?articlekey=10159

    RenalWeb carried a story today on the issue of patient knowledge which is in line with your comments on the need for education:

    Do CKD and ESRD Patients Understand Their Disease?

    http://www.medscape.com/viewarticle/589268

    While I still believe that the common usage of noncompliance within the medical community does have utility, I would simply note that by the definition of noncompliance in the study I listed in my post would have me as a noncompliant patient since there have been several times where I stopped my treatment about ten minutes early for various reasons such as an intense headache once where continuing just was not possible and of course the few occasions where my bladder would not hold out any longer.

    So, in my own experience, the term noncompliance was used mainly in the chronic care setting especially with our HTN and diabetic patients, but some of the applications of the term would define even very compliant patients to their care plan as noncompliant as noted by my own examples above. Yes, it is not a perfect term, but it does have some utility as well. I believe that noncompliance with its many definitions is something that you know when you see it. Some folks truly don't take their doctors advice for many different reasons.

    Dori

    "So, I do believe that noncompliance is used maninly in the chronic care setting especially with our HTN and diabetic patients, but some of the applications of the term would define even very compliant patients to their care plan as noncompliant. Yes, it is not a perfect term, but it does have some utility as well."

    It's used, but ILL-used, IMHO. "Noncompliance" tends to be used--as you pointed out yourself--to label people in a pejorative way for behaviors that may or may not be purposeful. For example, folks might not take antihypertensives because they have side effects that affect day-to-day life, because they cost too much and the individual can't afford them, because there are memory issues, because the person isn't even sure what they are for or how they work (i.e., you don't just take them when you "feel like" your BP is high...). This is a failure of education and our healthcare system, and laying at the patients' feet is unfair.

    I think we should get rid of the term and use the Chronic Care Model to organize chronic disease care. Then we'd be looking at WHY people aren't doing certain health behaviors and what might motivate them to do so, rather than simply blaming them for not "doing as they're told."

    Peter Laird, MD

    Dori, I concur completely with your assessment and that was the main purpose of my post. I am quite tired of hearing over and over again that it is the many "noncompliant" patients in dialysis that is the EXCUSE for bad American dialysis outcomes. The take on the several studies on this issue lends to exactly your conclusion, why blame the patient when there are iatrogenic factors leading to depression, loss of control and a restrictive environment well documented in the study above.

    I believe the single most telling study that I listed in my post is the one telling of how common PTSD is in dialysis units. PTSD!! What common traumas are so entrenched in dialysis units that a mental health disorder usually seen only combat soldiers would be found commonly in dialysis units? That is a smoking gun accusation against American dialysis care if I have ever seen one.

    Yes, noncompliance is not a perfect term and it is indeed used unfairly and negatively against patients at times.

    On the other hand, having taken care of many drug afflicted patients who truly were their own worst enemies, I must confess that for some of those folks the term was used accurately despite overwhelming efforts by entire teams seeking to intervene for their benefit. I will not in the least diminish the simple fact that it is a two way street on helping patients adhere to treatment plans for their own benefit. It would be wrong to simply state that patients do not as well have a responsibility for their own care.

    I for one know that phosphorus is one of my deadliest enemies. In such, I take great strides to avoid it in my diet as much as possible. My last PO4 level last month was 2.7 without any binders and it is usually no higher than 4.0. I must contend that many folks simply do not take to heart how important a renal diet is in our overall care plan. My dietician tells me that about 20% in our unit have normal PO4 levels without any binders. Yes, dietary compliance, or following dietary treatment plan is important. It is not only the dietician at work in this endeavor, but a dedicated patient knowledgeable of his own disease state that is where good things come together for a better outcome.

    But as to the main point, absolutely, the term noncompliance can at times cause more harm than utility. A difficult issue to say the least, but there is a medical team component to this issue as well as the patient responsibility that is usually the sole focus of attention.

    When patients suffer frequent bouts of nausea, vomiting, hypotension, cramping and blinding headaches after our usual care violent dialysis sessions, is it really any wonder that some folks just don't show up sometimes? After sitting through dialysis for two years now, my sympathies are with them understanding why they just don't want to be there. In fact, I am not looking forward to my upcoming Monday session in a couple more hours myself. Hopefully, no 12 hour headache tonight, but I have an 80% chance that it will happen after my long weekend.

    Lord, not tonight please!!

    Bill Peckham

    I think of it as accommodate. How well is someone accommodating their renal function (or lack there of) and a critical part of learning to live with CKD5 is to understand that you'll need to make certain accommodations.

    Depending on your situation accommodate could mean getting use to the hangover, avoiding certain foods and strictly controlling fluid intake all in an effort to mitigate the violent three time a week treatments. Or accommodate could mean making room in your house and life so you can get more dialysis which accommodates both the hangover and the dietary restrictions by avoiding them.

    I like accommodate. It sounds better and I think it also is more accurately describes my experience.

    Miriam Lippel Blum

    I like accomodate, too. It sounds less insulting and more like how one would address and speak to an adult. Language is important.


    I know also of a physician, Laura Mosquada, MD, who runs the geriatric clinic at UC Irvine. She NEVER uses the term noncompliant there in regard to the people treated. Insstead they say or chart that a patient either "agrees with," "disagrees with," or "doesn't understand" treatment prescriptions.

    Miriam Lippel Blum

    Amen, Peter. Thank you for putting it so well and backing it up with research. I am one of those people who has done what I thought was best for both my health and my life, combing the medical literature for what is best, and has yet been labelled at times non-compliant because I refused to accept what I viewed as mediocre medical responses to real problems.

    A small example from when I started on PD, my first modality...after a few months on the high biologic protein diet that focused on primarily animal sources, my cholesterol went through the roof. I had been on a low protein diet before to preserve my kidney function for as long as possible. The dietitian insisted I could not be a vegan because I wouldn't get enough protein. I decided to try it anyway...yes, I was noncompliant in her eyes. After six weeks on a vegan diet using tofu and other soy products as my protein sources, my cholesterol dropped to normal, I had great albumin levels, and all my other labs were great, too. The only other person who had better lab values than I was the other vegan in the program. We were "noncompliant" together.

    I would like to see all those professionals who torture people about fluid restrictions experience what a day or two is like after being pumped full of sodium modelling or hypertonic for intradialytic hypotension. The thirst that those treatments bring on is literally torture, in my opinion. They have no idea what they are really doing to people. It infuriates me. They are always blaming the victim but make it impossible really for the victim to succeed. With more dialysis that issue becomes almost moot.

    Also when dialyzors feel despair over their miserable existence and perceive that their future holds no promise of getting any better many will go to food as their comfort. Since they're going to die anyway they feel they might as well enjoy what little they can. I have heard this voiced by so many on in-center hemo. I have seen people publicly scolded by doctors and nurses, as if they were children, degrading self-esteem already damaged by the dependence and depression of CKD5.

    This system is so broken and corrupted by profit and industry it is pathetic.

    As for PTSD, I have been on home hemo for two years now with NxStage and I still have nightmares about in-center hemo. I hope I never have to return there.

    Zach

    I manage what I can; I accommodate what I can't.

    Dori

    I like "accommodate" a LOT and may just have to start using that! But we don't use the term "renal diet" any more. There is no such thing as a "renal diet." There's an "in-center hemo diet", necessitated by getting so little dialysis that you need to try to remove nutrients from your meals to accommodate the lack of treatment...

    Zach

    The word "manage" works well. Such as when I say I manage my diet, that means I control it, not the other way around.

    Peter Laird, MD

    Let me stir up the pot a bit, perhaps even play devils advocate with my own post. I must confess that the word noncompliant is a little bit of an ugly word, yet, whether we like it or not, it has an established medical-legal definition and history. As much as I liked being a doctor, it didn't take long to realize that there was always someone looking intently over your shoulder called a lawyer.

    I have heard many doctors tell truthfully that they were not sued when they should have been for mistakes that they made but on the other hand were sued when they made no mistakes. The medical-legal system is not often an arbiter of justice in this nation. It is never the less the 600 pound gorilla sitting in the room every time a doctor encounters any patient.

    In such, there are truly self destructive people that seek the attention of doctors, not that I have really figured out why, that simply do not take the doctors advice nor act upon it. I personally would never declare or DOCUMENT that a dialysis patient is noncompliant for leaving the session 10 minutes early due to headache, nausea, cramps or the myriad of "usual" dialysis side effects. I would instead call that intolerance, document that and explore options to make the patient more tolerant of the prescribed therapy.

    Yet on the other hand, medically-legally, if I had a patient that could come to dialysis but didn't, or engaged in self destructive drug use and other self destructive behaviors, I would be required to document that "noncompliance." (Sorry, but it is an established medical-legal term with great significance in the courtroom.) In fact, I have on many occasions documented this with several patients throughout my career.

    An example, I had a diabetic patient that many times missed appointments that often were given to him at the expense of my time by an add on that day, that stopped taking his insulin for months at a time, smoked pot, smoked cigarrettes, laughed at me when I would explain his potential demise, refused ancillary and social services, refused consultation and failed to address serious infections in his feet. On many occasions his HBA1C was over 17 (highest limits of measurement in our lab for a three month blood test average of glucose control.) I documented on dozens of occasions that he was the most "noncompliant" patient that I had ever encountered which is to this day still true.

    One reason that I was so diligent in my documentation of all my efforts and of all my health care teams efforts was because I knew that his family had a history of lawsuits that could by some be considered frivolous. I would not change anything that I did for this patient or in my documentation today. He was by all medical and legal standards noncompliant.

    The main point of my post was to draw attention to the term noncompliant in relation to the fact that it is often seen as a diagnosis of itself when in fact it is likely that it may in many cases rather be a symptom of inadequate usual care dialysis. Perhaps the term is used too lightly when patients have intolerance to dialysis, but it is a term that simply will remain within our medical-legal system, sometimes to the protection of those doctors that actually take good care of you when they encounter patients as the one above.

    I know that there are many that do care well for their patients. But without due diligence, any of us doctors could fall prey to just one untoward outcome that could end our career and our influence for patients good whether by our own actions or those out of our control. It is a reality of practice daily with every doctor that I know. In fact, proper documentation is legally required to maintain your practice. The legal intrusion into the doctor/patient relationship is real and tangible. I am sure that there are many patients on the other side of the coin that have experienced doctors defensive practices. It is a simple reality of American medicine that is not really the fault of the doctor that does this, it is simple survival.

    In such, the reality of self destructive patients leaves us with the need to be able to document that in the medical records since an adverse outcome and possible litigation is almost a forgone conclusion in these cases. Playing devils advocate as I am actually on the devil's side in the minds of many simply because I am a doctor, I simply don't see the possibility of a new term that will capture those unfortunate cases where people have self destructive behaviors which no intervention can prevent. An ugly word no doubt, but one that is firmly fixed in the medical-legal lexicon.

    Yes, I am getting my raincoat for the eggs sure to come,but just no tomatoes please, I am renal prudent today.( Sorry, couldn't help myself.)

    Zach

    Thank you, Peter.
    No eggs here.

    Miriam Lippel Blum

    Peter -
    We will try to accomodate your renal prudishness today and manage not to throw tomatoes. Eggs, however, are fair game...unless your cholesterol is high, too.

    William

    Ok. I'm going to call BS here. I'm a Hemodialysis Nurse. I work in the acute setting and Have also worked in the Chronic setting.

    I'm sorry, but when I have a patient THREATEN TO KILL ME because I had the audacity to try and educate her, that's a problem!!! When a patient would routinely walk into the clinic, sucking down a "super big gulp" of dark cola just prior to Tx.... You try pulling 10L off a patient in four hours. These people refuse to take responsibility for themselves. They literally walk into the clinic, tell at us when we try to educate and scream "fix it!!!"

    I've had patients on the other end of the spectrum too. The ones who are obsessive about their diet and their medications. The ones who NEVER miss a treatment. The ones who take responsibility... They live for YEARS. Decades even. I've had patients who have been on HD for 20+ years. They work full time jobs and live full lives. Unfortunately, they are the minority in the clinics I have worked in.

    Also, in this country, we do silly things like start patients on HD at ridiculously old age! I've started a PT who was 102 yrs old!!!! Why!!!! You want to talk about "throwing off the curve", even in otherwise fantastic health, a 102yr old probably wouldn't live much past another year or two. Don't the other "fabulous" countries have age limits for starting HD?

    What about our "Corpse Preservation Projects"? I'm currently working in long term care facilities, taking care of "patients" (I use that term in the Loosest of senses) who are all but corpses. They have next to no brain function. Unable to move or breathe on their own, these people haven't been conscious in years. They all have MDRO Infections, usually multiple ones at the same time, and their bodies are literally ROTTING in their beds. Yet we continue to dialize them. Their labs are atrocious. Not because they are non-compliant, but because their bodies are crumbling apart at the seams.

    Does Japan provide HD service for these patients?

    Are the numbers your quoting really acurate? Have the studies filtered out the patients who were on deaths door to begin with? Have they filtered out the patients that would never qualify for HD care in the first place, if they were citizens of other countries?

    Those of us who are out here doing the job, are doing it well. We can't babysit people 24/7 and we can't make them take their medications or even come to the clinic for treatment.

    Patients have to have some accountability in this process!

    amanda

    Thank you so much for this article. I am beside myself, seething with anger, an quite frustrated because my dialysis facility won't approve me for a home program until I am "compliant" for three months. This "compliance" is very vague and I have caused a kerfluffle just asking about the time frame and under what parameters this "compliance" curtails.
    They don't get the abject fear I have every time I even think about going to sit in that chair. I can't do three months of being a zombie. Right now I don't know what to do but your site is the only site that I have found that addresses this issue. Again Thank you.

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