From Compliance to Concordance
Compliance is defined as "the extent to which a person’s behavior coincides with medical advice" 1 – in other words, how well do patients live up to things required by their doctor.
The idea of compliance is based on an old-fashioned view of the doctor-patient relationship; a relationship where all authority and power is laid in the hands of the healthcare professional, and the patient is reduced to a receiver of an all-mighty knowledge that must be obeyed blindly. At least that is how many providers would like it to be.1
The World Health Organization (WHO) estimates the compliance rate for taking prescribed medicine amongst chronically ill in the Western World at approximately 50%.2 This number excludes all other kinds of compliance: treatment regime, exercise, food and fluid intake, etc.
I don't know about specific numbers for people on dialysis, but I dare say we are even less likely to be compliant, due to the tremendous number of recommendations regarding medication, diet, exercise as well as dialysis type, frequency and length.
That begs the question: Why are we so bad at following doctors’ orders? Is there something wrong with us? Is there something wrong with the recommendations? To be honest, I think it's neither!
One of the greatest barriers in dialysis is the complex routines we must endure. Trying to keep up with getting enough exercise, eating healthy, medicine dosage and timing as well as maintaining a stringent dialysis regimen will drive any normal, healthy person nuts. So when our kidney disease impairs our bodies and minds, keeping up with these requirements amounts to a draconian task.
One of the most insidious barriers preventing us from doing what is best for us is knowledge.
It takes a long time to truly understand all the little details. Unless we educate ourselves far beyond what is offered by our healthcare team, we will never obtain the necessary knowledge to maintain the optimal treatment outcome.
There are many reasons for this. We may not understand the consequences of our actions. We may not have been told—or we have missed—what happens when we do or don't do certain things. We may not want to do what we are told because it interferes with our lives. Or, we may not see the benefits of doing what we need to do. In all these instances we have left it to the professional to help us live the best life possible. Relying on professionals, however, does not mean full adherence to all recommendations with the threat of being deemed non-compliant if we don't stick to them!
What relying on professionals means is this: It is up to the (patient and care provider) team to figure out what the good life entails for the individual and their family. For many of us it is more important to live life to its fullest than to live a few days, weeks or years longer under a brutal health regimen. This was brilliantly illustrated in the SONG-HD initiative that David Rosenbloom blogged about here a few weeks ago.3
"The good life" is not the same to everyone. And it is not necessarily being completely compliant all the time. It may be drinking red wine with friends on the weekends, it may be traveling, it may be spending time with kids and grandkids. Someone may have to hold back with certain medicine to enjoy an active sex life. There are as many priorities as there are people on dialysis in the world.
The good life is not everything that fits neatly into a research paper. Many things can only be determined face to face in the office. It takes time and effort from both patient and doctor to learn to know what is best for the individual.
While patients need to know why certain recommendations are important, doctors need to know what is important to patients. This is the only way we can beat the 50% adherence rate observed by WHO.
One of the most unfortunate consequences for wanting to live one’s life is this: we are labeled “non-compliant” or “bad” patients instead of being viewed as individuals who have made a lifestyle choice based on what we feel is best for ourselves.
We need to replace the idea of compliance with one of concordance. Concordance is a collaborative relationship where patients and doctors listen to each other; one where patients have a say in their treatment plans. This model compels doctors and nurses to educate their patients by explaining the consequences of their choices. It also gives patients a better chance of explaining to their doctors what is important in life.
As much as patients need to learn more about staying healthy, doctors need to learn we have a life to live. Nobody lives in a vacuum and our social relations, our families, friends, spouses and children often take preference over keeping our health in optimal condition and our bodies finely tuned. Unless we can make it clear to our doctors that life is so much more than our health, people who do not live our lives will continue to tell us how to live it.
From a patient perspective it seems like a straightforward win-win situation if we can establish a collaborative relationship. Unfortunately it isn’t that simple. Doctors have to let go of some of the power we have given them. And nobody relinquishes their power voluntarily. Power has to be usurped.
It is our job to take back the power that rightfully belongs to us. Doctors only have the power because we collectively have given it to them. Historically they have had the “power of knowledge,” they were the ones who knew everything about disease and cure. They possessed the wisdom of the healing arts. But now knowledge is being democratized; everyone can go online and learn about any disease.
With shared power comes shared responsibility. Shared responsibility would eliminate the reason for compliance and replace it with the concept of concordance. Kidney disease would be an aspect of a life lived according to the abilities, needs and wishes of the person with kidney disease, while the job for the care team would be to help the person balance his or her life so they would get the best out of it.
Is that too much to ask in the 21st century?
Haynes RB, Taylor DW, Sackett DL: Compliance in health care. Baltimore, Md., Johns Hopkins University Press, 1979 ↩
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3068890/ (Medication adherence: WHO cares?)↩
http://homedialysis.org/news-and-research/blog/129-the-song-hd-initiative-it-s-not-the-same-old-song-and-it-s-got-a-very-different-meaning↩
Comments
Elaine
Feb 09, 2016 6:12 PM
Margaret Shultz
Jan 29, 2016 7:00 PM
Henning Sondergaard
Jan 29, 2016 7:34 PM
I recommend you show them David Rosenbloom's blog post from 12/09/2015 to show how 'fear of death' is a much greater concern amongst health care professionals than it is amongst those of us who will have to live with our disease.
Besides, it is YOUR life. Nocturnal is so much gentler on you, so their concerns are completely unfounded. What they say is akin to telling you never to sleep again for fear of dying in your sleep. It is exactly as silly and illogical. Regardless of any fear they might have nocturnal will be for your health.
Henry P Snicklesnorter
Jan 29, 2016 4:15 PM
Seven years ago, when first starting dialysis, I was frequently at loggerheads with my Nephrologist. I was, (and still am,) a non compliant patient in that I frequently pushed the limits and boundaries of his recommendations, - so much so, that he offered to give me an introduction to another Nephrologist of my own choosing, if I wished. This jolted me into realising that here was a man, (highly regarded by his peers,) who was acting in what he saw as my best interests, and I, as his patient, had my own agenda, which very often did not concur with his and was blithely going my own way, something that caused him great distress.
My solution to this impasse, was to formally write to him, explaining that I fully understood that he was acting in what he saw as my best interests, but I saw those interests, on many occasions, from a different standpoint. I stated that I acknowledged his advice was, medically, the very best that was available, but my own needs and aspirations were often going to mean that I would choose not to follow this advice. I formally released him from any liability for the consequences of my 'non-compliance' and hoped that we could continue our doctor-patient relationship with a better understanding of each other.
Our relationship today, approaches what I consider to be the ideal. He informs me of his recommendations regarding my treatment, - I inform him if I choose to go outside those recommendations and my reasons for doing so - and he in turn advises me of what he believes the consequences of those actions, but supports me nonetheless.
We both can then go forward with the knowledge that each understands the other and that I, as the patient, am able to live the life I choose, with the full knowledge of what the consequences of my choices might mean.
I believe that a patient-doctor relationship is somewhat akin to an arranged marriage, in that two parties are thrust together with no knowledge of each other and left to work out some way of making it all work. In my case, my Nephrologist and I have been able to find a way of making our 'arranged marriage' work. We have concordance, : )
Henning Sondergaard
Jan 29, 2016 7:25 PM
That does sound like a model for an ideal relationship. I truly believe there are many ways of getting to it. But all of them require for us as 'patients' to give up being submissive while our doctors change from the role of God Almighty to a knowledgeable partner and advisor who realizes there is a life to live outside of having a chronic illness.
Thank you for your story. I wish there were more people who had relationships like the one between you and your doctor.
John Agar
Jan 29, 2016 1:03 AM
Little by little, you, the 'patients' - though there has to be a better word for the 'you' and while I ponder that, none yet quite fit the bill - are changing us, the 'doctors', to be more understanding of and 'compliant' with our patients needs. And, as you know, I have long held that - in dialysis - the 'compliance' problem applies more to 'us' than to 'you'!
That middle meeting ground is, I agree, best described by the word 'concordance'. Again, Henning, beautifully said.
Henning Sondergaard
Jan 29, 2016 7:17 PM
John agar
Jan 31, 2016 12:09 PM
Ken
Feb 02, 2016 1:07 AM
Please let us know what you come up with.
Ken
Jan 29, 2016 10:03 PM