The Dirtiest Word in Chronic Health Care
by rn/writer 10,924 Views | 48 Comments Guide
Did that title get your attention? I hope so, because what I'm about to share here could change the way you relate to difficult patients with chronic health issues, especially those with type 2 diabetes.
- 40 Published Nov 5, '11
The Dirtiest Word in Chronic Health Care
Our treatment of patients with chronic health conditions often looks more like a wrestling match than a collaboration. But what are we supposed to do with cardiac and renal patients who don't follow their fluid restrictions. Hypertensive folks who won't lay off the salt. The obese whose greatest exercise is a hike to the refrigerator. And patients who "forget" to take their meds, cancel appointments, or refuse to follow our instructions. These are the ones who make us want to throw up our hands in frustation.
Of all chronic patients, type 2 diabetics are arguably the most challenging. Because their disease is systemic and sneaky, their indiscretions often don't result in immediate signs or symptoms. But the long-term nature of their condition makes them a good population to study.
What comes to mind when you think about type 2 diabetic patients? Obesity? Neuropathy? Foot ulcers? Heart attack? Add the possibility of kidney problems, blindness, and amputation, and you have a hospital shipload of challenges.
Some of your patients—the highly-motivated and extremely capable—will prove to be the teacher's pets of the medical world. Those in the hump of the bell curve will skip, amble, plod and sometimes stumble, but they'll still make steady progress toward better health. Then there are the ones you'd like to suspend or at least send to medical detention, if only such a thing existed. Hollering expletives at patients is considered unprofessional, so you'll have to settle for writing a dirty word in their charts.
These are the folks we label as—“noncompliant.”
To a healthcare professional, this might seem like an innocuous term describing a patient who is doing bad things or isn’t doing good things. No big deal. Right? Let me tell you what “noncompliant” and “noncompliance” can mean to someone battling type 2 diabetes.
Noncompliance implies its opposite—“compliance,” and that tells you is that there's an agenda at work. That's not such a terrible thing on the surface, but whose agenda is it? The doctor's? The nurse's? The parents' or the significant other's? Who's missing from that list? Ah yes, that would be the patient.
It might seem obvious that if Joe Donuteater is diagnosed as a type 2 diabetic, certain things will automatically fall into place. We'll outfit him with a glucometer, tell him he has to start exercising, write out a handful of prescriptions, and send him off to the dietician so she can explain food exchanges and journaling to him.
What could possibly be wrong with any of that?
What's wrong is that it's a nearly universal practice to kick-start this rescuing behavior before the diagnosis has had a chance to sink in and without once asking the patient what his goals are and what he is willing to do to achieve them. We answer questions the patient hasn't yet asked or even had a chance to think of. And we assume that because our goals are the only ones that make sense to us, they are the only choices, period.
In making that assumption, we pick up one end of a tug-of-war rope and hand the other to the newly diagnosed diabetic. And when he pulls against us—a fairly reflexive reaction once we start yanking—we call his behavior noncompliant. Then we tug all the harder— educating, lecturing, pleading, scolding, shaming, and using all manner of scare tactics to whip this sorry guy into shape. (I want you to get your numbers under better control so you can preserve your kidney function. We’re concerned because the results of your lipid panel show that you're a prime candidate for a heart attack. You don't want to lose your feet, do you?) Does "our" worrying work? With many of these troublesome patients it does—for a little while. But then they fall off the wagon (there must be a lot of potholes in front of pizza joints and Chinese buffets) and don't come back to the office for months or even years.
Which begs the question—if the methods we've been using on this difficult group are really so effective, why are there still so many “noncompliant” patients?
The second thing that the term “noncompliant” suggests is that the patient answers to the professionals. That might have cut it during medicine's paternalistic “golden days,” but in the age of informed consumers, such a backward approach won't fly. Offended patients might not jump ship, but they also might not get better.
Using “compliance” to describe a patient's cooperation with an itinerary he didn't agree to is like patting him on the back because he followed us into the cab we said would begin his trip to boot camp. To often we later have to reverse ourselves and protest (loudly) that he didn't comply at all, dadgum it, because he gave us the slip at the airport and hopped a plane to Hawaii! Not unlike the patient who walks out the office door promising to get with the program (our program), only to return months later with his HA1c a full point higher.
Finally, the concept of compliance often contains elements of coercion and capitulation that can strike tiny sparks of resentment. Who doesn't feel like smoldering a little when they fear being lectured or spoken to like a naughty child if they don't knuckle under? And when those sparks ignite, that resentment can lead to rebellion, rebellion to failure, and failure to giving up entirely. That's serious enough when a job or a relationship is on the line, but when such a power struggle has the potential to undermine a person's health and possibly cut short his life, the outcome can be tragic.
But that's not our fault, is it? The disease took the patient's choices away. Not us.
That's the mindset we've been using. How well do you think it's working?Last edit by Joe V on Nov 7, '11
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9Nov 5, '11 by Kooky Korkyyou can lead a horse to water but you can't make him drink. i think you are correct that we don't give the patient time to accept the dx. i have a friend at church who could not accept the dx for 10 years - when the feet became painful enough that md care was sought. he went on insulin, by request, thinking it would allow eating whatever was desired.
even then, being an emotional overeater, someone who used food to relieve stress and fear, he could not, for another 10 years, determine and accept that using insulin to cover high sugars during the many accuchecks he did every day and sugar to cover the frequent hypoglycemic events he experienced every day was not really very good diabetes care.
gradually, after 20 years, the pt was able to start some mild exercises, which helped get a few pounds off. very gradually and with all the trepidation and terror that a drug addict or alcoholic endures, he began to cut back on sweets and add some leafy green vegetables and low glycemic berries to the diet. he continues to struggle but is moving forward, ever so slowly. the wt loss stands now at about 20 pounds, some of which were lost and regained and lost again. but that's ok. at least he's able to work on it now. he has increased intake of water and is able to do chair exercises when various health problems and pains prevent much other activity.
the wt loss will take time, but the body is just amazing in its ability to recover. so even if he only loses 1/2 pound per week, it's a good thing. progress is being made on the body as his mind is renewed. we encourage him realistically. he doesn't like trumpets blared over losing wt or making positive dietary changes. just a quiet "thumbs up" seems to be all he needs. i might, at some point, see if he might be willing and able to help others. in aa, they teach that the recovering alcoholic who wants to stay sober must give away his sobriety by reaching out a helping hand of encouragment to others who are struggling with that powerful enemy. i think this friend's harmful way of using food is the same thing and i think he could keep his food sobriety by helping someone else to achieve theirs.
i guess the point, now that i think about it, is that he came to realize that he had some challenges to face. he came to realize that other people could encourage him and help him figure out how to improve his lot, but they couldn't make the changes for him. he was the captain of his ship. like most of us, he liked that idea, even if it was also scary. i think there were also some anger issues, some learned helplessness and anger about that. just a guess. once he could realize and confront and move on in spite of these side-tracking thoughts/beliefs, he was able to begin his fantastic journey.
he found motivation for change in various things, such as learning that he'd soon be walking his dtr down the aisle. he wanted to look good and be able to walk her and then dance at the wedding. he did lose about 10 pounds. not much considering how much he needs to lose, but it was a start and he now had a huge victory under his belt.
when he learned later that there was a grandchild on the way, he wanted to be able to thoroughly enjoy and help that grandbaby, he lost another 10 pounds. another huge victory.
he's got a dtr graduating from college in a couple of years. we are hoping this will motivate him to lose more weight and get his a1c's down even more, by thinking of how he will want to look good for the camera on that momentous day.
change can be really hard. disciplining ourselves requires making new habits. and it requires that the person building these new habits have the inner strength and the motivation to do a huge amount of mental work and physical work in order to succeed.
i think that our society, with its present economic challenges, is reverting back to the historically common view or is more verbal about expressing the view that's always been there; the view that accepts survival of the fittest as just the way life is. after all, should those who are struggling to keep their own heads above water really be burdened by those who are draining their energy and their resources?
this is a legitimate question. societies have historically agreed that there is definitely a limit to how much help they can give the sick, the weak, the disabled. that's not altogether wrong. it sounds cold and hard, but there really are limits of food, medications, money, and other survival elements of life. sometimes, it's as harsh as who gets the only warm blanket orthe only food and drinking water. we saw this with hurricane katrina. what the limits are and who determines them is the tough part.
i hope we don't have to endure severe deprivation in america. i hope we can continue to help people who are struggling. as nurses, we have a great opportunity to help, as neighbors and relatives we also affect people other than our patients and can
apply our knowledge of various diseases and our knowledge of human nature in many other relationships.11Nov 5, '11 by llg GuideGreat article.
I also don't like the "compliant - non-compliant" perspective because ... for most people, they consider that a dichotomous variable. In reality, it's a continuum. We are not "compliant" or "non-compliant." We live a lifestyle and make choices -- and those choices fall on a continuum of being healthy or not. We eat healthy foods, we eat empty calories, we do some exercise, we sit and watch TV.
For all of is ... life is a process ... an ongoing series of activities and choices. Not everything is 100% "either - or." It's a little of both.
For someone with diabetes, life is no different in that respect.12Nov 5, '11 by VivaLasViejas GuideI think I am going to print out this article, make copies, laminate them, and hand them to every MD I may ever encounter in this lifetime.
Never has such a salient point been so perfectly expressed (outside the Bible, anyway). I've always hated the "n" word for the same reasons and generally refuse to use it in my charting, even when it's semi-appropriate. Like the gentleman in Kooky Korky's excellent post above, I'm slowly negotiating my own way through the maze of diabetic care, and I bristle whenever somebody tries to label me with the "n" word because I'm NOT a child who needs to be led around like she just wet her pants, or a teenager who's prone to rebel just on general principles. I am a late-middle-aged adult who needs INFORMATION; what I do with it is up to me.
I alone am responsible for my own well-being, therefore I get to choose how to manage my disease. And what I choose at this point in my life is to take things one day, or even one crisis, at a time. I decide each day to eat fewer refined carbohydrates and more of the "good stuff" because I happen to like having energy again, not because my doctor says I have to. I determine whether I'm going to check my blood sugar on a given day, and how many times I think I need to check it---I'm not going to waste money on expensive test strips when my A1C is 5.8 and I am not having any of the symptoms of hypo- and hyperglycemia that I've come to know so well.
I've lost about 20 lbs. over the past several months, which is nothing compared with what I really "need" to lose, but this isn't about weight loss alone, it's about controlling a disease that I know will end me if I fail to make wise decisions the majority of the time. I do not expect myself to be perfect, and I'm not.....sometimes I eat a few candies, sometimes I have a full-on carb attack at a Mexican restaurant (and feel like crap for the rest of the day). I also don't exercise, because I hurt in a lot of places and I'm not going to risk failing (again) because I'm not ready to commit to it. But I do get up from my work desk and walk around my building much more often than I used to, and I'm proud to say that I went out on Halloween night with my grandsons and walked both faster and farther than I've been able to do in over a year. So I no longer beat myself up over it, and I won't let the medical establishment do so either.
Miranda......what can I say.....you are BRILLIANT and I'd like to be you when I grow up. WELL DONE!!!4Nov 6, '11 by Quark09Yes, yes, and YES... to the article and to all the comments thus far.
I've sat on the nurse's side of this equation often enough, and yes, it was pretty easy for me to gaze at a patient and think "Wow, you've already lost one arm, and yet you still persist in blithely managing your 400+ CBGs with insulin coverage alone." Then one day I actually paid attention as her face lit up with the first taste of her non-diet Mountain Dew - and wondered what I would do if I suddenly had to cut down or eliminate my Sprites, french vanilla coffee creamer, and the myriad other little treats I partake of without another thought. It's quite easy to think "Well, I'd just cut all of it out and deal with it as I should" rather than really reflect on whether I could, or would even want to.
I think one thing I've gotten a little better at is listening, rather than "educate, reinforce, and repeat." Thanks for reminding me I need to do it more often.8Nov 7, '11 by talaxandraThe concept of compliance is a throwback to the days when doctors dictate behaviour and patients were passive recipients of care. We've come a long way in a lot of areas but sadly the overwhelming majority of us don't look at chronic disease management as an act of collaboration with the person most affected by the condition.
It's not something I ever thought about until I started a Masters in Health Ethics. Most of my lecturers had non-health care backgrounds and very different perspectives, predominantly far more patient-focussed than mine. When the issue of compliance came up one of them asked my class how many of us had finished a course of antibiotics strictly by the book - every dose evenly spaced, none missed, course completed... and I realised that if I had trouble complying with five, seven or ten days of medication, with no lifestyle modification, then my patients who were able to change their lives in response to their illnesses weren't the norm, they were exceptional. That so many are able to ought to be admired, not accepted as the minimum acceptable behaviour!
A couple of years later I was asked by two of my lecturers to address a group of third year medical students for a session during their ethics stream. I spoke about one of my typical patients - end-stage renal failure secondary to hypertensive diabetic nephropathy, with four other comorbidities and the usual complications of dialysis dependency (renal osteodystrophy, anemia, constipation). I brought in a sample of his daily medications: eight tablets mane, three midday, six nocte, plus three enormous phosphate binders TDS, insulin, and weekly EPO. I talked about the lifestyle restriction of thrice weekly haemo, and his dietary restrictions.
And in the thirty minutes I spoke I downed 600ml of water. I finished my part by saying "In the last half hour I drank more than a third of the average fluid restriction, including watermelon, jelly and icecream, of a patient on peritoneal dialysis. Like almost all Haemo patients, "John" had a 500ml restriction - that's all of today's and a fifth of tomorrow's restriction. That doesn't change just because, like today, it's the end of summer and hot."
At the end of the year the students voted that their most useful class - across that semester's syllabus! Compliance is easy to dictate and much harder to implement.4Nov 7, '11 by VivaLasViejas Guide500 ml/24 hr. I'd rather forgo sweets forever than give up drinking as much fluid as I like. I cannot even IMAGINE what it would be like having to live through each day without a liter bottle of Crystal Light, Diet Coke, or even water in my hand at all hours......thirst is such a torment.2Nov 9, '11 by mcmgalI firmly believe that the first question to ask any client is what are your goals, and what do you need to achieve them? This can be asked whether it is the first time they are receiving a diagnosis or this is one of many follow ups. The client should always own the responsibility for their care.3Nov 9, '11 by oopsimoutBravo!! As a nurse in the field of Chronic Disease Management and a lay trainer for a Chronic Disease Self-management Program, I must say I am thrilled to see that others look at the word "noncompliant" as a dirty word. Our patients don't wake up one day and say.."Hey I'm going to develop diabetes, HTN, CHF, and COPD, etc and I'm going to let it ruin my life." We need to look deeper at our patients, help them find the barriers to achieving optimal health and help them learn to overcome those barriers. Sometimes it is more than just being stubborn or lazy, it could be socioeconomic, cultural or lack of comprehension. So many things impact self-management. Thank you for reminding, enlightening us.1Nov 9, '11 by 2182nancieThis is not working at all, since we have diabetics who are getting sicker and sicker. Perhaps we really do need to look at how we treat these (and other) patients. Think of it this way, would you like to be told what you had to eat, and to greatly increase your activity level in order to maintain your level of health? All of this with very little support as well. You may think it shouldn't be that hard, but remember this, life goes on, with all of it's stress,( some of us have more than our share) Thanks for listening, maybe we can change things.