10.04.2008

pity, modernity, and the spectacle of suffering

a thing i did not expect was that thinking about how to make my own medical practice (as opposed to figuring out how to accomodate myself to becoming a physician-employee) would make me start doing medicine differently.

i am doing more teaching and giving more backrubs. i am doing more therapeutic teaching and giving more diagnostic backrubs.

this makes me slower than ever.




i was already slow, but now i'm the slowest. however, i ask the patients if they're "on a timeline", and if they are, i'm very speedy indeed. and if they're really just there for one thing - med refill; earache; strep throat check; newborn weight check - i'm speedy. but i stopped regarding a lot of single-issue visits as single-issue visits. coming to see a doctor to talk about losing weight is a not a single issue (how are you sleeping?). coming to see a doctor for a diabetes check is not a single issue (did your wife quit smoking too?). coming to see a doctor for birth control is not a single issue (are you having sex about as often as you want to, or do you end up having sex when you don't want to?).

i'm slowly relaxing back, as First Wife suggested, into "what you wanted to be before you felt you had to protect yourself." i am trying to incorporate the practice of medicine into that. i'm trying to become less divided. but it's hard to do the work i am good at and know best, in the setting of the hamster-wheel clinic with its 15-minute appointments.

i was telling my urologist pal the other day that the most important thing i think i've been taught in residency has been how to avoid diagnostic testing. i told him, "at first, i would have been a fan of the full-body PET scan; 'why wouldn't you want to know everything?'" i used to think The Technology was Good. i used to think the truth was out there. i used to be a health fundamentalist, which is funny, considering how oppositional i was toward medicine; i used to think there was a physical truth about a body.

now i'm a doctor, and i don't think there's a truth. i think there's a temporary set of conditions, description of which is dependent on the conditions of observation. i guess i'm a quantum physician. what are the implications? the main implication is that it takes longer to explain things in a way that is salient and instrumental to the person concerned, the patient. the person has to be more patient, ha ha.

i have had a beef for a long time about the diagnosis-driven nature of american medicine. it's so very diagnosis-driven that folk even get angry if you simply make that statement. but diagnosis is an arbitrary place to start a medical, uh, discourse. a medical "thing." a medical pastime. we have trouble imagining any other way. but relying on diagnosis as the truth of medicine has certain implications, too.

i'm not saying, toss diagnostic schemas out the window - i'm just saying that diagnoses are contestible, thus are diagnostic methods, thus is the supremacy of diagnosis itself. i'm just saying. medicine actually has room for diagnostic uncertainty - it's not simply a marker for incompleteness, or incompetence - but patients generally don't know this, and insurance won't cover it, and doctors don't generally play that way. but it's where a lot of my patients live - especially those in the land of chronic pain - chronic fatigue - chronic anxiety - chronic dysfunctions of various types.




cf. Pity, modernity and the spectacle of suffering (Radley A. J Palliat Care 2004 Autumn;20(3):179-84)
...This world is one where the relationship of individuals to society is contested in the context of medicine, with all its technologies of treatment and uncertainties of prognosis. For patients who criticize or oppose medicine in order to recover their dignity, it is necessary to articulate or to portray their suffering. In this way, they are able to show not only that they live in spite of illness, but that they also live by virtue of it. From this perspective, dignity is shown to be part of a collective response to a medicalized world.

and
Negotiating the diagnostic uncertainty of contested illnesses: physician practices and paradigms (Debra A. Swoboda, Health 2008;12;453)
...Emergent, contested illnesses... share a number of characteristics: (1) their symptoms are broad and nonspecific, and differ in kind and severity among individuals, even among those with similar exposures and histories; (2) their pathogenic mechanisms have not been identified; (3) their causation is disputed as to whether it is psychological, biological, or both; and (4) their treatment involves competing therapies.

...Receiving a contested illness diagnosis involves a series of diagnostic negotiations... When physicians are confronted with a set of symptoms that are unclear or mysterious, they attempt to arrive at an 'organized illness'...One form of error involves faulty information gathering, which is linked to errors in understanding patient complaints... A second form of medical error, faulty verification, occurs when physicians fail to ensure that all symptoms are explained by the assigned diagnosis... Verification error is most likely to occur when test results are inappropriately used... or when the predictive limitations of tests are not acknowledged... Context errors often result as a function of typicality, when physicians attempt to explain symptoms in terms of what is most typical rather than what is possible...


so my mom sends me this column - my mother, the zebra, to me with my rufus! - and it's about diagnostic uncertainty - and even more interesting is the way the comments - it's a blog column - veer between the terse autocratic pronouncements of doctors and doctor-partisans ("questioning undermines the very core of medical progress") and the pitiful tales of actual patients vicitimized by the diagnostic imperative - and they don't even get started on how they're paying their medical bills!

if you're a patient, you're going to think the problem (with the folks making most of the comments) is that they were misdiagnosed. if you're a doctor, or a doctor-partisan, you're going to think the problem is that they had hopelessly unrealistic expectations - or that they're hopelessly ignorant (if not crazy). my point is that the number one thing at stake is always the diagnosis. the presence of the diagnosis. dealing with the diagnosis. longing for the diagnosis. i'm just saying.

"Diagnoses... carry powerful assumptions about our bodies and our place in the world... When the diagnosis trajectory and patient picture don't match, we are left with an 'atypical,' 'complicated,' 'idiopathic' or 'undiagnosable' case. One of the risks for these patients, in addition to prolonged physical discomfort or suffering, is that without a diagnosis, their experience may lose meaning and relevance in the eyes of others... We seem unable to harness the power of diagnoses and give full weight to the meaning of an individual's illness experience."

...from the 166 comments:

How is a doctor supposed to treat something when he or she has not arrived at a diagnosis?

Doctors and patients need a diagnosis to get insurance coverage.

Without the revolution in diagnosis, there would never have been the revolution in treatment... Ex post facto questioning undermines the very core of medical progress.




People who want hand holding and emotional support can look to other non-md sources.

the question really is do you want a dr like the one on the tv show "house" that is smart and tries to figure out the root cause of the problem and is good at it but totally rude?

You have to realize that the days of marcus welby are over. With hourly patient quotas set at one patient every 15 minutes there is no time to dally.

Beyond encouraging caring people to go into medicine, I'm not sure how a system can solve a problem like this one.

Perhaps in some distant future this will change, with mindful reform, but until then it's silly to complain.

Do you want an empathetic doctor who doesn't know what your diagnosis is???




The most important thing when seeing a new doctor is to do your utmost to appear a sane, rational person. Remember that you are auditioning.

Until you find the doctor who figures out a diagnosis, you don't get taken seriously.

Without a label to an illness, a patient is often treated like a sad individual seeking attention or as just a waste of time.

My husband was once told, "to get a life," because he kept going back to the doctor with heart-related complaints. He finally convinced someone, only hours before he probably would have had a massive heart attack.

I had mild chest pains for several days. I was willing and able to live with it but my wife insisted on getting some medical diagnosis... I ended up in the hospital for 24 hours... They ruled out heart disease, but at that point no one cared about my mild chest pain.




I was diagnosed with fibromyalgia, and then suddenly everything became about that... I got my regular doctor to test me. And lo and behold, I had a thyroid condition! ...Also, I had sleep problems. I was told that was typical for fibromyalgia... It wasn't until I went - again on my own - to a sleep specialist and discovered I had sleep apnea!

Thirty years ago, I was diagnosed with rheumatoid arthritis... In 1995, I found out I didn't have rheumatoid arthritis; I had lead poisoning... At this point, I wouldn't take my dog to a medical doctor for a broken nail.

I've been suffering from chronic cough for 11 years now. After 5 different doctors, I still have no diagnosis... I intend to pursue alternative medicine just as soon as I can afford to fly to Tijuana for treatment.




My spouse had a fungus that was overlooked for years.

I am a 56 year old post menopausal woman and I was just told that my blood test came back positive for pregnancy... I figure I'm just a medical misfit.

From birth, one of my daughters (now age 30) had all sorts of little problems... One side of her mouth drooping, failure to thrive as an infant, 6 fingers on each hand, not much muscle tone... attention and learning problems... constant infections (ear aches, strep throat, pneumonia, bronchitis, sinus infections)... Finally, when she hit 21, I did some research and discovered that this whole collection of miscellaneous symptoms adds up to Velo-Cardio-Facial-Syndrome (VCFS), a deletion on Chromosome 22.

I have a medical condition, cavernous angioma (a type of vascular malformation in the brain) that was diagnosed three years ago after I had acute symptoms. Yet for years, I had dizziness, and doctors, rather than look closely, simply wrote it off as "stress".




After 8 years and 6 different specialties, I still don't have diagnosis... I now rely on Google for medical information and pray that my illness doesn't get worse.

Most doctors proscribe pills for what they believe ails you without any thought to how the pill may otherwise adversely affect you .,not until a crisis arrives ,then they throw another pill to conteract the original pill,they read what a pill is supposed to do without any thought how otherwise the patient might feel or harm it might do .. as for experts…get five and you will have five different conclusions as to what ails you.. just mention "lyme disease " and see what games are played while the patient suffers .

The autism and Alzheimer's epidemics has been mainly caused by medical doctors and dentists.

I have cancer, and have been on chemo continuously for over 4.5 years... What concerns me is that the cancer docs don't seem to address other health issues that I have, such as thyroid disease, hypertension and slighly high blood sugar.




I recently helped treat Patient B who was sent up from the ER with a diagnosis of acute pancreatitis causing severe stomach pain... I began doing some digging and questioned Patient B further. Patient B had been diagnosed and treated for erosive esophagitis due to acid reflux years ago... We ordered a scope (EGD) for her stomach to follow up on the acid reflux and potentially treat it.... Instead of the ulcers or inflammation of the GI tract that I expected, it showed plastic spoons in the stomach. Patient B's psychiatric illnesses, including a personality disorder, were apparently not as well-controlled as previously thought. Patient B also had no idea how those spoons got there. The GI fellow was thankfully able to remove the spoons without surgery using the EGD scope... As a clinician once told me - If I had to choose between being lucky and being good, I'd choose lucky every time.




A patient has high cholesterol and is overweight by more than 40 lbs. Under the current system, the doctor gives the patient a prescription for a cholesterol-lowering medication, tells the patient to exercise more ("walking is good"), and may give the patient a handout of diet guidelines... The doctor has made the diagnosis, but the patient has to treat the disease...
Under new protocols [suggested by this commenter], doctor tells patient what diagnosis is and says patient will be referred to a lifestyle intervention program... Physical therapy twice a week or more for first three months and transitions patient to personal trainer and public gym for next three months...
A nurse practitioner/dietitian/nutritionist meets with the patient and the patient's entire household. The family group members are all required to attend several meetings about diet and nutrition... Then the family goes to cooking class with other families once a week for the rest of the six months...
Patient receives preventive and any other dental care needed... Concurrently, nurse practitioner/dietitian/nutritionist conducts a work analysis for the patient. This involves looking at the patient's schedule, how the patient gets to and from work, how the workday progresses, where the stressors are, etc...
The employer may be required to make accommodations, such as a treadmill desk where the employee can work while burning off some calories, or a stationary exercise bike at a desk, or a way to work some of the time from home to free up time for exercise instead of commuting, or for a refrigerator and microwave at work to store and prepare healthier lunches, or for schedule changes (if the business can fit them in) so the employee has time for breakfast and is home early enough to eat dinner well before bedtime...
After six months of intensive lifestyle therapy there is another six months of maintenance with the personal trainer or a physical therapist...
At the end of the year, cholesterol is measured again.




Why can't they have something like a video game that posits every symptom known to medicine with yes, no, maybe buttons.

Treat the patient not the diease, diease comes in differnt forms and shape and when it attacks the person (mind and phisical) is not just phisical but instead is a combination of the whole, mind, spirit, and phisical. I dont agree with the thought thought physician should only focus on the fisiopathological area, instead like the father of medicine it should serve the public with a humble mind and a loyal spirit. regardless of what the pharmacology industry preasure.

You know what, over the past few years, I've come to realize that most of the problems with healthcare in American can be traced right back to the patients.

Diagnosis can be tough, but that's why you get the big bucks Doc!