Traditional Medical roles, a mis-match
The problems in chronic pain states
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Like many people with chronic problems, or permanent disability, we with FM, often find that we are often outright discriminated against or dismissed by medical professionals.The whole situation is a major source of frustration for both sides. In fact, it can be an outright war between us. The reason is mainly due in my opinion and that of professionals, to how most current day medicine is practiced.
"The old model or so called, acute care model, is where the patient presents a list of problems, the doctor makes a diagnosis, and then tells the patient what to do to get well ( take these meditations, change life style habits etc.) and the patient is expected to comply, and therefore, get better. They are in effect, cured. This is called the traditional role, where the patient is passive and just "does what they are told". "Traditional medical models best apply to those who conform to the "sick role," that is, patients who temporarily discontinue their usual roles, and resume them when they improve. " Deborah A. Barrett"
This model works fine for acute care, but it doesn't work very well for chronic illness, or the so called, incurables or, insolubles. The model fails in that case, as the problem cannot be "cured" ( at least not yet ). However, rather than consider that it is the approach of the doctor that maybe in error, it often becomes a case of the doctor, blaming the patient. Doctors have a hard time dealing with patients who don't improve, as they are very success oriented and when given a scenario where success is unlikely, it often becomes in the doctors eyes, the patients fault.
Good patient VS Bad patient:
Consumer Reports: "Doctors described good patients as those who appear to understand what the doctor is saying, ask few questions, and respect their time" which for acute, IE well known, simple to manage problems, this is easy to comply. However, complex problems require a great deal more of the doctors time. There are often many questions and the outcome, even after a major time investment, cannot be assured.
Frankly, most doctors hate to deal with just about anything they cannot diagnose and cure. If it is going to be an ongoing thing, most will want to wash their hands of it and very often they do just that.
The reason that many persons with FM are seen by a rheumatologist for example, is not that FM is a rheumatic disease per sec, although it is classed as one. Rheumatologists become the default physician for the simple reason that they are much more accustomed to dealing with long term care, given as they handle other life long diseases, such as arthritis, lupus etc., that can be managed, but not yet cured. In fact, in most cases, with regard to FM, it is often a rheumatologist who makes the first diagnosis. Over 1/3 of the patients seen in your average rheumatologists office today, are persons with FM.
Compliance Vs Non compliance:
"SACKETT and HAYNES, described the word "compliance" as potentially troublesome, since by definition it implies a one-sided paternal relationship, with the patient as the passive recipient of a clinical edict. Within this framework, patients can either yield to the wisdom of the doctor ("good patient") or defy doctor's orders ("bad patient"). The term "adherence" on the other hand, suggests a more willing partnership between clinician and patient and, as a result, has largely replaced the term compliance in most state-of-the-art behavioral, pharmacological and clinical trial research in the USA. " C. S. Rand, Johns Hopkins School of Medicine"
Physicians agree that "good" patients are the ones that follow the doctors' orders. Non-compliers don't. But the reasons patients don't comply are often quite rational, but those perfectly rational reasons, are often treated with contempt by the physician. For example: They might be told to take a prescription medicine they cannot afford. Yet their inability to pay for the medications, is not seen as a good enough reason for their failure to comply.
Personal experience: I had a doctor once, give me a rather large stack of prescriptions knowing full well that I was a self pay patient with no insurance and a minimum wage job. The total cost of the medications would have taken over 1/2 of my monthly income. Which of course, I could not afford to do and still keep a roof over my head and food on the table. However, I was treated with abuse for my failure to comply and was told " you must not want to get well very badly then." This is inexcusable.
The health care professional is very often something of an authority figure, who is trying to get the patient to do what they are told; the patient's job in their eyes, is to be obedient. Understand however, the doctor does not cure the patient, the doctor gives the patient the name of the problem and suggests treatments.
"The trouble with this approach is that it tends to focus the doctors attention on numbers: blood pressure numbers or LDL cholesterol for example. As a result, the patient as a person, may fade from view. At times, a person having trouble with a treatment, may have difficulty getting the physician to address the problem." Don't Be A Good Patient
We are told in short, to just "put up" with numerous side effects, or medications that create more problems than they solve. Or that are ineffective for us. Also, we are often told to take more medications, to deal with the side effects of the first medications, in order to "comply" with the doctors orders.
Further, almost anyone walking into a doctors office today is going to be told, to stop smoking, stop drinking caffeine, stop eating high fat foods, lose weight etc. All perfectly reasonable statements, in the eyes of many doctors. However, this is yet another form of blaming the patient. The underlying message is, "you don't take care of yourself, therefore, this is all your own fault.
Which, doesn't hold water, as if this were true then those who have never smoked, who don't drink caffeine, or eat fatty foods and are a reasonable weight, wouldn't have the disorder. The same goes for those who do manage to comply with the doctors demands, only to find that their FM, is not improved. As you can indeed improve the over all fitness level and still have just as many FM problems as before. " ... aerobic exercise is beneficial to patients with FM overall, but the possible cardiorespiratory fitness gain, is not related to any notable improvement of FM symptoms." Aerobic fitness effects in fibromyalgia. J Rheumatol."
If, after all this, the patient fails
to improve comes the ultimate insult. Which is the assumption on the
part of many
physicians that since the treatments and life style changes, did not
resolve the problem that the patient is either faking the problem, or
hidden Non compliant who is not following orders. Again, blaming the
rather than admit that the medical professional themselves have failed
as they can offer no viable solution.
We are often considered very bad patients, in that we will often flat out refuse to even attempt certain treatments. This is due to the fact that most of us have "been there, done that, got the T shirt" when it comes to trying various medications and will quite honestly, tell the doctor where to stick the pill bottle, when they try and shove things at us we have already done lots of, to little or no benefit.
Almost anyone with FM, who has had a diagnosis of long standing, quite often tosses out literally every medication we were once given. The why is simple, they either don't work, outright, even after extensive trial. They stop working in a very short period of time and upping the dosages, just increases the side effects to the point of intolerance. Their benefit to side effects ratio, is heavy on the side effects, with very little benefit. Or, they make us feel worse, not better, no matter how long a trial we give them.
Given those factors, is it any wonder we say "NO" we are not doing any more of those? Yet, this perfectly reasonable and rational attitude, is seen on the part of many doctors and others to mean, that we "don't want to get better", or that we are refusing the doctors advice. Completely disregarding the fact, that we have, in all likelihood, done the very medications we are refusing, often in large numbers and varieties and are refusing more of the same, for good reason.
As none of them made anything significantly better for us, and most current day studies back up the claim ( Reference American College of Rheumatology ) that the more common "treatments" do not work. So we, quite rationally, do not see the point in spending money on and taking medications that are not helping and often make matters worse. It makes no sense to us to take something, just so we can say we are "doing something about it."
We are not interested in "placebo" effects. Nor are we generally interested in being a field test "guinea pig" yet again, for unproven medications. We want real, verifiable, medications, that result in real improvements. I do not think we are being unreasonable with such a request.
Empowering the patient:
Most medical models, do not empower the patient. Other than in a hospital setting, most of medical care, is self care. You see a doctor for a few moments of a day, ( apox one hour a year, spread out over three visits ) get a diagnosis, and are given suggested treatments, but after that, it is all in the patients hands. "Self-care is a normal human function and accounts for the management of three-quarters of all episodes of ill health. More formalized applications include patients and doctors working collaboratively to develop a set of guidelines which patients use to manage their chronic disease themselves." Robinson A. Hope Hospital, Salford, UK
This however, does not sit well with the older model of the physician as an authority figure. There is often a battle waged, between the doctor and the patient, for dominance and control over the situation. It becomes a vicious cycle and since stress will always cause symptoms of a chronic illness to flare up, you have created a problem in and of itself. As there is almost nothing more stressful than constantly having to argue with your physician over your care needs !
The fact of the matter is, "health care professionals exist to serve the needs of the patient", not the other way around. More than one patient has complained that "the doctor treats me like I don't know what's going on in my own body" in short, they feel the physician thinks they are too ignorant to know anything and the doctor runs rough shod, over anything the patient might have to say.
This is so common, it even has a name. The "Doctor is God' syndrome. The physician as the fount of information from on high, typically seen as arrogant, and impressed with themselves, even by other doctors. But in point of fact, what it really means ... is a doctor who feels, that in all cases that, THEY and only they know enough to talk about the illness and will cut the patient off, when they try and discuss it.
Now, as modern day doctors will freely attest, they hate patients who come in with reams of information they got off the Internet about their problem. As all such information must be taken with a grain of salt, for accuracy. But, there are many patients who literally do know more about their own problem, than the doctor does, this is no more than fact.
The patient has the time to do extensive research, time the physician may not have and further, they have an insiders view on what the illness is really like. They know their own medical history, they know what treatments they have tried and which ones failed. In short, if they have been treated for the problem for any length of time, they may well understand it much better than the doctor. A person who has only one side of it, the medical facts, VS the medical reality that the patient lives with, day in and day out. That is a force to be reckoned with and a wise doctor, pays heed.
Quality of life:
"An additional goal of treatment is to increase the quality of life for the individual suffering from a chronic illness." (I question the idea of calling it an additional goal, in fact, to my way of thinking, it should be the first goal. Short of discovering a cure, this is the only reason we head to a doctors office in the first place, as we want to mitigate the symptoms and improve our quality of life. )
"Intensive, high technology treatment, oriented toward cure and full restoration of function, which has provided the dominant orientation for much of medicine in recent years, is usually inappropriate to the needs and problems of the chronically ill. A medical care system that lacks a sense of purpose beyond these goals will find itself increasingly uncertain and inept in the face of the demands placed upon it by chronic care. " Ethical Challenges of Chronic Illness
With longer life spans and the aging of American, chronic illnesses will come more and more to the foreground and the medical profession has to adjust its goals, with regard to treatment. It is no longer just curing illness, but giving the medical support needed to allow the patient to cope with what cannot as yet, be cured, in as much comfort and dignity as possible.
"The goals of treatment are to (1) slow the progression of the disease; (2) prevent complications; (3) maintain function; and (4) sustain the quality of life “so that individuals can work and manage their own lives in their own homes" Congressional briefing
Research shows, it is not just the pain that is the problem with life, it's what the pain does TO ones life's. The obstruction of goals and plans, the limitations the disorder itself creates. All of these things, create their own problems, which need to be addressed by the medical profession, a persons self esteem is only one of the casualties.
"It is very important to recognize that chronic pain conditions also contribute to low self-esteem. Years of pain and fatigue that have obstructed meeting life goals can have a disastrous effect on self-esteem. Other factors that can arise as a direct result of chronic pain will also contribute to low self-esteem. Some of these are as follows: