This woman, Mrs. Hickory, suffers from fibromyalgia, which disease is quite possibly the source of more frustration in physicians than almost any other. It is a disease of unknown cause which causes debilitating chronic pain, without any anatomical basis. The disease is often referred to, in a slightly deprecating fashion, as "supratentorial," which is the medical professional way of saying "it's all in your head," referring to the tentorium, a membrane which roughly divides higher from lower brain function. (Feel free to clarify, S. Lee) Anyway, I've seen enough of these patients to be able to pick them out across the room. Generally female, 30s to 50s, and usually with a constant facial expression of someone who has been wronged. They usually talk with a bit of a whine in their voices as well.
So you have a combination of a mysterious disease, a large proportion of physicians who don't believe it is real, coupled with a personality which is not, to put it mildly, endearing. You can see why people avoid rheumatology.
But I actually like fibromyalgia patients. They do whine sometimes, and some of them have an almost amusing inability to talk about anything but their pain for more than 30 seconds or so, but I think part of why they have the expression and manner they do is the fact that no one believes them. It's a maladaptive response to the fact that their disease pushes them to the sidelines of life.
What is it I see in them? They are, for one, the absolute best test and best encouragement of bedside manner I have yet to experience. A patient who is in pain no matter what you do to examine them, wincing even at the stethoscope being placed on their chest, is a challenge, surely. But I feel that if I can connect with and gain the trust of someone hard wired to distrust and feel threatened, I can gain anyone's trust, right?
There are a couple of key points in interacting with these patients that are not intuitive, but they transfer well to other patients too. First, I have to remember that the pain they feel is real, even if I can't discover the source. It's like Morpheus in the Matrix: "[What is real is] electrical signals interpreted by your brain." That's horrible metaphysics, and I'm not an empiricist, but it is where you need to start with these patients. I suppose, though, a deeper point could be made that the essence of understanding is the recognizance of a person outside yourself, so that the interaction, from the first, proves a reality outside oneself. But fibromyalgia sufferers are rarely so philosophical.
To return, accepting the patient's perspective on events is necessary to start. Secondly, I have to let them talk. This can be challenging, but more than a lot of other patients, these need to be heard. That's what I'm there for, so I let them talk. Third, when I start making plans, I have to engage the patient and make sure they understand what we are doing fully. Making sure they have a voice, that they do not feel as marginalized as their disease can make them, is vital here. And fourth, sometimes a little handholding goes a long way.
I'm not a real big physical contact kind of person. I don't generally hug friends, etc. Probably because I'm male, but the point is, medicine has taught me that you have to have physical contact. It's part of the interaction. Hospitals are rather antiseptic, and it is possible to do a large part of the typical exam and workday without actually touching a patient. Even a stethoscope allows some distance, and was actually designed for that purpose. (True story: The stethoscope was invented to allow physicians to hear heart sounds without placing their ear directly to the patient's chest, as it offered some young ladies offense. Not to mention the expense saved on ear-cleanings. I made that last part up) So when a physician, or physician to be (176 days!) like me actually touches a patient, holds their hand while speaking with them, places a hand on their shoulder while using the stethoscope, it makes a difference. At least, that's what my patients have told me.All of these points can profitably be applied to any patient, but it is toughest with patients who force me to be intentional about all this. Anyone can be nice to someone sweet. It takes real grace (or long practice) to be nice to someone who is not sweet at all.
So from fibromyalgia patients like Mrs. Hickory, I am taught patience and compassion. More important, I'm taught how to be both patient and compassionate professionally. And as I sat on Mrs. Hickory's bedside, holding her hand as she cried out her story of pain and misunderstanding, I remembered why I came to medical school.
But leave me a little love,
A voice to speak to me in the day end,
A hand to touch me in the dark room
Breaking the long loneliness.
6 comments:
Is fibromyalgia the same as, or related to, chronic fatigue syndrome? I know a few coworkers who have suffered with this, and a couple who have gotten better, but it took years.
Your third point, about making sure the patient understands, is a very good one. If a doctor could somehow ask the patient to repeat in paraphrase the salient points--but what doctor will take the time to do that?
p.s.I hate being touched by rubber gloves. :-)
I'm not positive they are the same, but similar kinds of people seem to have the diseases.
And I have worked a few excellent doctors who aske their patients to repeat back the plans they have just outlined. They are few, but very valued.
My recent observation after being on a mood disorders psych ward last week is that a huge number of those with PDs have fibro. Perhaps it's a coincidence, perhaps not. The difficulty of treating patients with personality disorders' other medical conditions due to their psych problems may contribute to the negative attitude towards fibro in the medical profession. Just a thought.
It would be a real shame if med students are avoiding rheumatology because of FM patients. There is lots more to rheumatology than FM. And if this is really the kind of patient interaction you enjoy, then rheum might just be for you: mysterious diseases, imperfect treatments, lots of 'art', patients who really appreciate your help. Us rheumatologists think it's a blast. And rheumatologists are the nicest docs around ...
Carpus - I definitely haven't ruled it out. I love also the fact that often, when someone comes into the rheum clinic, they leave feeling better, after an injection, etc. Very interesting, and you do get a lot of the cases where everyone else has just thrown up their hands in frustration. We'll see.
Your disposition is refreshing:
So, You Want To Be A Doctor……
Lately in the media, others have said and appear to express concern about the apparent shortage of primary care doctors in particular. Typically, the main reason believed and speculated by others for this decline of this health care profession specialty that historically has been the apex of our health care system is lack of pay of this specialty when compared with other specialties chosen by potential physicians while in training, as the annual salary of a PCP is around 130 thousand a year on average, others have concluded may be the national average and factors in payers both of a private and public nature.
Yet considering the additional attention of shortages of students in some medical schools as well, as conceived by others, one could posit hat this professional vocation that has been one viewed in the not so distant past in the U.S. as one with great esteem and respect may not be desired as a vocation by many, that requires commitment and dedication, as reflected in their training regimen in the U.S. that consumes about a third of thier lifespan. Such reasons for this paradigm shift may include:
Primary Care Doctors perhaps more than other physician specialties seem to be choosing to practice medicine under the direction and financial security of one of the many and newly created health care systems These regional and nationally created systems are typically composed of numerous hospitals and clinics under combined ownership- frequently of a private nature that is not dependent upon their beliefs as it is perhaps on their profit motives and intentions. Yet their approach and etiology of their views regarding the restoration of the health of others are usually similar with such mergers of multiple medical facilities, which are presently preferred to save costs, it has been said, and therefore these systems have not been protested by a largely uninformed public.
Conversely and in addition, this system of increasing popularity is not necessarily a desired method to practice medicine as a primary care physician, often stated by them as members of their employer that has the power to limit and dictate how they practice medicine. This is because, among other reasons, such doctors have largely unexpected and unanticipated limitations regarding their patients’ heath provided by them. This is further aggravated by possible and unreasonable expectations of their employer, such as mandating that doctors they employ are required to see as many patients as theycan in a day, and there have been cases of physicians being fired by a health care system- along with financial rewards for seeing more patients a day than what is determined as average visits by others. Such requirements likely and potentially affect or alter the clinical judgment determined by physicians employed in what may be viewed as authoritarian employers, which would limit the medical care they provide to their patients, as well as the quality of this care. Also, such health care systems may have their own managed health care system that may be determined by factors not in the best interest of the patients of doctors employed by the health care system.
The primary etiology and stimulus for a doctor to practice medicine in this way is due to their frequent inability to provide and employ ancillary staff, combined with the increasing premiums for their mandatory malpractice insurance, which may make doctors financially unable to work independently.
Malpractice laws and premiums, which is determined in large part on a state level, are an issue with those required to have this adverse aspect of their professions. Also, these premiums become more expensive for doctors, depending on the perceived risk of their chosen specialty. For example, the premiums of an OB/GYN doctor are usually higher than one of a specialty viewed less risky for lawsuits, such as Dermatology, perhaps. Plantiffs win about 25 percent of the time on average a half a million dollars. 95 percent of these cases are settled out of court.
In addition, the issue of medical malpractice is also frequently a catalyst for a doctor to practice what has been called defensive medicine, which basically means that the health care provider is prohibited from relying upon their subjective factors in their assessment of their patients, which in itself raises the question of what the point was of all of their training in the first place. Because if a doctor practices medicine in such a way, it typically involves what may be considered as unnecessary diagnostic testing for their patients to rule out what may be unlikely disease states of their patients’ medical conditions. This waste of medical resources is further validated by the legality reflected in the tone of the notes a doctor usually annotates or dictates with their patients.
Such restrictions and limitations imposed on today’s primary health care provider are usually not fully illustrated during their training for this profession, which is one that has been viewed as one that is quite noble and of great responsibility on a societal level. It seems that this perception and vocation that now is greatly misperceived due possibly to being deformed by others who may have profit as their motive for the health care they may dictate to doctors they may employ in some way, which often and likely is in conflict with their motives as doctors and how they wish to deliver needed health care to others. This may be why this medical profession may no longer be viewed as distinct from other vocations, in large part, as it seems that presently the profession of a doctor has been reduced to one dependent on the financial stability and growth of its employer, which may alter how the doctors perceive what is expected of them as well, which may affect the importance of how they view their profession, as it has been said that overall, doctors are somewhat understandably more cynical and demoralized, which may be replacing the pride they historically have viewed their callings as doctors, as well as the perceptions of patients in the U.S. Health Care System.
Further complicating and vexing to these restrictions is the usual financial state of the individual physician, as theynormally have to pay off the debt acquired from attending medical school and training, which averages well over 100,000 dollars today after their training is completed, it has been estimated, along with this debt amount presently is about 5 times higher than it was only a few decades ago.
Conversely, there are some who believe that doctors in the U.S. are over-paid and are compared with some corporate monster, who behaves based upon the premise of greed. In spite of how they are judged, physicians are likely not absent of financial concerns- which may be of more of an issue than many other professions, comparatively speaking, in addition of taking on more responsibility that is of greater importance compared with other vocations. Such realistic variables should be factored in when one chooses to judge the profession of a physician. On the other hand, no physician should view their jobs as no different from any other venture capitalist when rationalizing their income and motives related to this exceptional vocation as a physician, as others are more dependent on their judgment.
It has been determined by others, and suggested often and lately, that many of today’s physicians practicing medicine in the United State do not recommend or speak favorably of their professions compared with their typical views of their profession in the not so distant past. While this self-perception physicians may have of a negative nature may be somewhat understandable it is also and potentially unfortunate for the health of the public in the future, and the nature normally associated with the medical profession which could deter ideal medical care for others
There have been cases where doctors do in fact change careers, and get into vocational fields such as medical communications or corporate medical companies. Also, expert witnessing is another consideration for those who choose to leave their profession. Finally, other choices considered include consulting and research. The training of doctors fortunately leaves them with options not involved directly with the flaws of medical care, but this is bad for us as citizens, overall. The etiology of their departure from their designed profession is largely due to the negative state perceived by themselves as well as others of their profession as medical doctors.
Then again, not all doctors are deities. Like others, some are greedy and corrupt, which complicates others in this profession in relation to how their vocation is viewed by others and based on limited judgment and analysis. Yet citizens overall should determine what sort of health care they desire, and it seems that often they fail to voice this right as a citizen.
For perhaps Primary Care Physicians in particular, the medical profession and those who provide medical care clearly needed by others to some degree appears to be absent as a desired path of today’s careerist. The authentic reasons for what many believe to be a negative perception of possibly the entire health care system may never be known, yet many would agree that most U.S. citizens are understandably concerned with the state of this system of great importance to society. Yet need to be active more in assuring this necessity is more aseptic.
“In nothing do men more nearly approach the Gods then in giving health to men.” --- Cicero
Dan Abshear
Author’s note: What has been written has been based upon information and belief of a layperson, yet also the assessments of a patient.
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