The Call

cancer

Damn!, I hate these calls…

Lying on my desk, clipped to a yellow manila binder, is a single sheet of paper. Its pleasant color format and sampled photomicrograph belie the gravity of its content:

Adenocarcinoma, Gleason grade 9, involving 60% of the specimen.

How do you deliver a death sentence?

Your first impression of Charlie is his sheer mass: 50 years young, healthy as a horse, built like a tank, a former football player turned popular coach at a local high school. He arrived at my office after seeing his family physician for an acute illness, with fever, chills, and problems urinating. His doctor had diagnosed a urinary tract infection, placed him on an antibiotic, and drew a PSA–a screening test for prostate cancer. It was markedly elevated: over 100, with normal being less than 4. I grumbled to myself as I reviewed his chart: Those damned primary care docs shouldn’t draw PSAs when patients have prostate infections–it just muddies the waters.

PSA (prostate specific antigen) is a test which measures a protein in the blood stream released by prostate tissue. It has greatly improved early detection of prostate cancer in the 20 years it has been in widespread use–but it is not, strictly speaking, a cancer test. It is noisy–often abnormal in other conditions, including benign prostate enlargement (BPH), inflammation, and prostate infection. It is virtually always elevated in the presence of an acute prostate infection–often markedly so–and can take months to return to normal. The high PSA alarms the patient, however, who is told he may have cancer. But most do not–and Charlie looked like a classic case of infection.

His history was typical, and his response to antibiotics appropriate, so this seemed at first glance like so many other similar cases I had seen. His prostate exam was alarming, however: rock-hard and irregular, unlike the typical soft, boggy texture of an infected gland. Experience and training kicked in, and I knew exactly what we were dealing with: a relatively uncommon form of prostate infection called granulomatous prostatitis. I had seen dozens of cases–always alarming on first exam, with very high PSA values–and always responding to long-term antibiotics. Charlie was started on a one-month course of high-powered, high-priced bug exterminator, and came back for follow-up after its completion.

He was feeling better, and his PSA had dropped markedly, to 45. His prostate exam also seemed improved, but still quite abnormal. I remained quite confident in my diagnosis–after all, cancer doesn’t get better on antibiotics–but was unwilling to wait much longer to know for sure. I scheduled a prostate biopsy, reassuring him after its completion of my optimisim that the results would show only infection.

The report was a blow to the gut. I sat silently, staring at it, in stunned disbelief.

In the age of PSA screening, most prostate cancers are detected at an early, curable stage–although their slow-growing nature makes treatment less important in very elderly patients. The chances for cure at diagnosis are determined by an estimate of the size and aggressiveness of the tumor. Size is determined by exam, ultrasound findings, and total PSA values; aggressiveness by the Gleason score–a value indicator (between 2 and 10) of the aggressive appearance of the cancer cells under the microscope. Higher is not better: Gleason scores of 9 and 10 indicate rapidly growing cancers which tend to spread early and are difficult–if not impossible–to cure. Charlie had drawn a pair of deuces in a high-stakes poker game: large volume, high-Gleason score cancer. The statistics were dismal: he would likely be dead of cancer in 5 years, regardless of treatment. And as cancer deaths go, this one’s not pretty: pain is a huge management problem in many, as the cancer infests and erodes the spine and long bones, breaking even the strongest of men. One learns to hate this disease before very many such cases have been seen.

And now I had to call him with his biopsy results.

The actual call will be brief: I will inform him that, unfortunately, the biopsy has shown cancer, that additional tests will be needed to determine its extent and the best way to manage it, and arrange for a follow-up visit in the office. The real bad news will be transmitted then, face-to-face, with more than enough information for its gravity to sink in. To do this–without robbing hope–will require more inner strength than is readily at hand.

But for now, I simply need to tell him he has cancer.

The word cancer encapsulates the deepest fears and anxieties of man, embodying in one small word pain, suffering, loss of control, hopelessness, dependency, death, the fragility of our dreams and hopes, and our uncertainty about the hereafter. To inform a patient that he has cancer is to shatter the illusion, the daily denial that death may yet be outmaneuvered, forestalled, kept on hold for some future date of our own determining. It is an illusion which dies hard–surprisingly so, as we alone among all creation are cognizant of its inevitability and certainty.

Perhaps the cruelest wish a man might be granted–were there some bottled genie passing out such favors–is knowledge of his own future. Yet, in some small measure, that power has been granted to me, and others of my profession. Not in any specific manner, of course–not of days or years, details or circumstances–but in knowledge deep enough to see the broad strokes: shadowy figures through rippled glass, of pain, and loss, and shattered dreams, of desperate grasping at the frail straws of fading hope, as the drumbeat of mortality pounds ever louder toward its dark crescendo.

Patients receive the call in different ways. Most accept it with seeming stoicism, and little expressed emotion–yet it is not hard to imagine–and sometimes to sense–the tight grasp of fear that grabs the throat and grips the heart. When wives are listening, the fear is more immediate, more palpable, as voices tremble with panic despite every effort to control it. A million questions will arise–but almost never on the initial call. On rare occasion, there is a casual indifference to the news–prompting reflection on what strength of spirit–or dense denial –such men possess.

I often wonder how I would receive the call. As a Christian, I am confident of a life hereafter, eternal, spent in the presence of Him who loves me. Some call that arrogance, or self-righteous; it is not. God alone knows better than I the darkness of my heart, the depravity that makes me uniquely unsuited to be in the presence of the Holy One but for one moment, much less eternity. But I have been adopted–an unwanted child by an unspeakably loving and merciful Father, who only asks submission to His tender guidance and direction, and transforms a lost fool into something useful, something cherished, someone with purposes aligned–though poorly so–with His own.

But the call of death–so confidently faced from the comfortable vantage of good health and cheap grace–will strike fear into my heart when it arrives, for far smaller challenges have brought dread in larger measure. There will be the fear of the ordeal, the journey of suffering, the loss of things now treasured but instantly made worthless. There will be the pain of watching the loss of those close to me, struggling to make sense of a relationship, undervalued while unthreatened, yet now more precious while counting down inexorably to its end. I know–by the tutor of past and bitter experience–that faith will sustain me and mine through it all. But one cannot know what that day will be like–nor should we wish to ever know.

But for Charlie, the battle will now be enjoined–the weapons and werewithall of modern medicine in all-out war against its implacable foe. Perhaps by some miracle or unexpected grace he will be given a reprieve, a window to revalue and reassess life’s course, its priorities, its purpose. For even when we are cured, we are healed to face death again: Lazarus, once risen, will revisit the stony crypt. Yet the Voice which called him forth calls us also, beckoning toward a painful light from the cold terrors of death.

How difficult to be the herald of another’s mortality–it is a burden no man should have to bear. Some will deliver it through the steely detachment hammered hard by years of training; some avoid it altogether where possible, through choice of profession or abdication of responsibility. But for those who must speak this hard truth, may there be grace and wisdom, empathy and compassion. May it be also for me.

Health Care Quality:
Symptoms & Causes

Geranium
On a previous post on transparency in health care, a commenter (Carol) asks the following excellent question:

You might offer your thoughts regarding conventional medicine’s penchant to treat symptoms rather than heal the underlying problem. Is this a manifestation of the restrictive insurance company protocols? Is it the way medical schools train physicians to think? Is it born out of an historic medical continuum? Something else entirely?

This is a bit off the topic of quality in medicine–although on second thought, it does relate to quality–at least to the perception of quality.

Of course I cannot speak for all physicians, but primarily for myself, and for those physicians I know and work with. Does contemporary medicine emphasize the management of symptoms over the diagnosis and treatment of underlying causes? The question seems to presuppose that it does–and perhaps in Carol’s experience that has been the case. But I believe the presupposition is incorrect, at least for most physicians.

Physicians are by training and disposition problem-solvers: we are drawn to the solution of puzzles, the solving of mysteries, the resolution of quandaries and dilemmas. We thrive on this stuff. A few days spent accompanying interns and residents on teaching rounds clearly demonstrates this: students are presented with signs, symptoms, lab results, x-ray findings, and asked to make a diagnosis, or give a list of possible diagnoses, and suggest additional tests or studies to narrow these down. “Stump the resident” is a favorite game of every teaching physician. This is our training: we are always looking for the underlying cause of a symptom or problem.

Any physician who simply treats symptoms without trying to determine root causes and the correct diagnosis is at best incurious, or more likely, poorly trained or inept. You would fire a mechanic who tried to fixed your car without understanding the problem first; you should fire a physician who does the same.

But before you pick up the phone to fire your doctor, you might want to think this issue through a bit more thoroughly.

Symptoms are but one of the many tools used by physicians to get to the bottom of a patient’s problem. They are, of course, paramount to the patient: in most cases, this is why you went to the doctor in the first place. And usually, patients have some idea or opinion about what is causing their symptoms. But symptoms can be wildly misleading, and patients — even well-informed ones — are more often wrong than right in their self-diagnosis.

Many serious diseases may have little or no symptoms at all, or present mild symptoms easily dismissed as non-serious problems. The body is also rather adept at presenting with symptoms in areas remote from the problem. A kidney stone may present with pain in the groin, nausea, frequent urination — or no symptoms at all. Leg pain may be from a back problem, or a blood vessel blockage in the abdomen, or a leg cramp. The pain of each may be virtually identical.

Where this issue comes up in most cases is when exhaustive evaluation — often involving multiple doctors — fails to identify the cause of a patient’s symptoms. We’ve all heard stories about Aunt Mollie’s stomach pain, which no doctor could figure out — until she died of cancer. We have come to expect, given the highly advance state of medical technology and diagnostic tools, that every symptom or problem we have should be full explainable, and diagnosable. The simple fact is that this is not the case, for a number of reasons:

  • Some problems are quite simply very difficult to diagnose: their symptoms are vague or misleading, diagnostic tools are inadequate to pinpoint the problem, or the problem may be a rare or difficult condition unfamiliar or unknown to your physician. This does not necessarily mean your physician is “bad” or “incompetent”–medicine is a vast and complex field, and even a very good internist or family practitioner cannot know everything about every problem. Specialists, on the other hand, tend to know a great deal about their area of expertise and often very little about other fields of medicine. When you see the specialist, and he tells you he cannot find the cause of your problem, he means he cannot find the cause of your problem in his area of expertise. Frustrating, no doubt, but accurate.
  • Sometimes the problem is minor–even though the symptoms may be significant. The stomach pain you are convinced is cancer may well be a pinched nerve, a pulled muscle, or something in your diet. Symptom treatment may well be the best approach, as the underlying problem is both self-limited — and very difficult to precisely define.
  • Sometimes the problem can be diagnosed, but there is no known cure. Symptom management here may be the best of very limited options — or the only option.
  • Believe it or not, the patient can be the problem, rather than the physician. Patients sometimes provide limited or misleading information, withhold critical information due to forgetfulness, embarrassment, deliberate choice, or because they deem it unimportant (it always amazes me when a patient arrives for a visit with a new physician and does not know what medications he is taking!). They demand a pill or a procedure to fix a problem which lifestyle change — smoking cessation, weight loss, exercise, abstinence from drugs or alcohol–will correct. I can treat your arthritis pain with a pill — but losing 50 pounds and exercising may be a much better solution, and won’t give you ulcers or a heart attack. If you refuse this advice, then I may be forced to “treat your symptoms.” And unrealistic expectations also feed the fire: the new “miracle cure” you hear about on the news may make you expect that which medicine cannot provide in your instance.
  • Alternative medicine practitioners often castigate the medical profession for failing to treat the right problem–telling you the real problem is a deficiency of this, that, or the other thing. They then sell you expensive and worthless supplements and treatments based on anecdotal testimony and quack science. They never have to prove their claims, and are totally unregulated. Let the buyer beware: if I give you a sugar pill, and tell you its a cure, 10-20% of the times your symptoms will get better: a well-documented fact called the placebo effect.
  • Keep in mind that physical symptoms can indicate mental, emotional, social, or spiritual conditions or diseases. A CAT scan will not diagnose the abdominal pain you get from an abusive husband; a brain scan will not find the cause of a headache brought on by a pint of bourbon the night before; your back pain may be worse because you lost your job, or your son got busted for drugs, or your mother-in-law has moved in to stay. And if you never mention these things to your doctor–or if you’re doctor isn’t interested in hearing about them–the underlying problem will not get addressed.
  • Lastly, let’s not forget (although physicians often do) that doctors are not gods: we don’t know everything; we make mistakes; misinterpret information; get frustrated and impatient with difficult patients who consume huge amounts of time and energy on vague symptoms and hypochondriacal concerns; get tired and overworked; are distracted by personal or professional problems–in short, we’re humans. Sad but true. Expect otherwise and you will be disappointed. If the problem’s not being found, get another opinion, educate yourself, go to a clinic specializing in difficult diagnoses or challenging problems. And keep in mind: if the last 10 doctors have told you they can’t find a cause for your symptoms, maybe–just maybe–there is no serious problem, and it’s time to simply treat the symptoms–or learn to tolerate and cope with them if they cannot be treated. Sometimes life is hard, and the best medical science has to offer is not sufficient. Hard to swallow, but true in some cases.

So how does this relate to quality in health care? Keep in mind that quality and perception of quality are not necessarily the same. A highly skilled, conscientious physician or team of physicians may evaluate your problem thoroughly and knowledgeably — and still not arrive at an answer to your health problem or symptoms. They have practiced high-quality medicine — but your perception of that quality will be poor, because they cannot figure out your problem. This is one root (of many) of the malpractice crisis: poor outcomes do not by necessity indicate poor quality care. Perfectly-performed surgery may have a disastrous outcome; the correct medication may have serious and unexpected side effects.

Anyway, that’s a long-winded answer to a short question. More later on malpractice and peer review.

Voice Recognition Redux

trollSeveral months ago, I upgraded my voice recognition software to Dragon NaturallySpeaking version 8. I have been using voice recognition software for over five years now, and have been very satisfied with it, although older versions could be maddening at times–and hilarious at others. This version is amazingly accurate–my only complaint since upgrading is that I am not having nearly as much fun proofreading my notes as I have the past.

Voice recognition software is rather remarkable technology, and to watch the medical version crank out complex terms with aplomb is almost magical. The software does not make spelling errors, but contextual errors are relatively common, and need to be carefully screened before sending your documents out the door.

A few of the contextual swaps I have encountered are as follows:

What I said: The patient said Viagra wasn’t working, and wanted to try Cialis.

What it typed: The patient said Viagra wasn’t working, and wanted to try and see Alice.

What I said: The patient was thoroughly reevaluated by her previous physician.

What it typed: The patient was thoroughly violated by her previous physician.

What I said: The patient will be started on depot testosterone.

What it typed: The patient will be started on devil testosterone.

What I said: The patient has prepubertal pubic hair changes.

What it typed: The patient had puréed pubic hair oranges.

The accuracy of this latest version has made such–ahem!–interesting errors quite a bit less common — to the point where I was becoming a bit complacent about careful proofreading. That is, until today:

What I said: The patient was seen several years ago for problems of urge incontinence, and has been on Detrol with good symptom relief.

What it typed: The patient was seen several years ago for problems of urge incontinence, and has been on a troll with good symptom relief.

And you thought they spent their entire lives living under bridges

Quality in Medicine – Pt 2:
Transparency

This is the third post of a series on issues related to improving quality in medicine (so why is it named “Part 2”? Don’t ask… ). The two previous posts addressed a new proposal for reimbursement called pay-for-performance:

Masquerade maskLast year, my trusty 1995 Acura Legend began to have baffling problems with intermittent overheating. After multiple trips to the shop for new hoses, a new water pump, radiator repair, new thermostat, and other fairly costly fixes–none of which resolved the problem–I decided it was time for a new car. I wanted to get a recent model coming off lease, and still on warranty, rather than a new vehicle. So I fired up my browser, and went shopping. I looked at the reliability of models in which I was interested, whether there had been any recalls, auto reviews, average gas mileage, and blue book prices. I browsed at several local car dealerships online, made a few calls, found a car, and did a Vehix search on its history. I then drove to a local dealership, and drove home with my new car a few hours later. The online investigation took less than 2 hours.

The last time I changed primary care physicians, I picked up the phone and called an internist friend of mine, and asked him whom he was seeing, then made an appointment with his doctor. The car will get me around town; the doctor may save my life.

Does anyone else think there’s something wrong with this picture?

As a physician, I have much more inside information than the average patient. When I need an orthopedist or surgeon, I can talk with the OR nurses who work with them day in and day out, and get a very good idea of their technical skills. I know many physicians personally, and have mutual patients, and therefore have a good feel for their intellectual wherewithal and interpersonal skills. But that’s about as far as I can get, and it’s still basically a crap shoot when picking a doctor. I know little or nothing about their complication rates, clinical skills, how current their medical expertise may be, how many malpractice suits they’ve had filed against them, the competence of their office staff.

And most patients looking for a doctor know far less about their choice than I. Why is this?

The answer is a lack of transparency.

Transparency is a term most often applied to the personal rather than the professional. It speaks to the wholeness of personal integration, the ideal state of being: what you see on the outside is what exists on the inside. Like a grand masquerade ball, we live life parading the beauty of our ball gowns and the cleverness of our costumes, while hiding our dark insides–our shame–behind exquisitely-crafted masks. Complete transparency is an unattainable goal–but when approached in some small measure, is one of the most liberating experiences in life. When we get honest about our own imperfections and shortcomings, and share them with others who recognize their own weakness and care for us despite ours, we begin to experience grace. The vast energies we have put forth maintaining our shields of deception can instead be diverted to addressing our own failings–often recognized for the first time–and giving of ourselves to others.

So what does this have to do with health care?

Professions by their very nature–requiring long training, utilizing a language unique to the craft, by their very nature embracing a highly specialized subset of knowledge not generally available to those outside the profession–tend to be somewhat closed and secretive. This is, by and large, not some nefarious plot to exclude the ignorant masses to preserve one’s power and wealth, but is rather a function of time, inertia, and the complexity of one’s field. It is far easier to do what you understand well, and have been highly trained to perform with little or no effort or forethought, than to explain your complex thought processes and instincts gained by years of experience to one without your training.

But the control of knowledge, given our human weakness, tends towards arrogance and defensiveness–as Paul of Tarsus observed many centuries ago: “Knowledge puffs up.” This is nowhere more evident than when, despite our knowledge, skill, and expertise, things do not turn out as expected. When challenged, we circle the wagons, employ defensiveness, rationalization, and self-justification. Whether or not the problem is self-engendered or the result of circumstances beyond our control, our natural instincts are to hide the ugly child, stuffing it in a closet while we move on, ignoring its cries, pretending all is well. And lest you think I’m singling out the medical profession, all professions–indeed all individuals in every walk of life–suffer from this tendency, to greater or lesser degree. You will find this process alive and well in the welder’s shop, at your car mechanic, at your bridge club and in your classroom. The problem in medicine is that the consequences of such cloaking behavior are potentially so great. If your bridge partner is lousy despite claiming otherwise, you will be angry and look foolish; if your car mechanic is not up to snuff, it may cost a lot of money and frustration, but is unlikely to otherwise harm you. If your doctor’s skills or knowledge are not up to par–whether he or she recognizes it or not–the impact on your life can be profound.

So how might this transparency thing make a difference?

Call me crazy, but here’s how it should work in my perfect world: When I need to see a surgeon, I go to the web, lookup his name, find his schooling, fellowships or other post-residency training, and how long he has been in his current practice. If I need my gallbladder removed, I can see statistics on how many he has performed, his incidence and type of intraoperative and postoperative complications; average, maximum, and minimum pain assessment levels at five days postoperatively; average length of stay in the hospital; and number of patients requiring re-operation. If I am looking for an internist to manage my hyperlipidemia, I can find out how many such patients he has managed, and how many have achieved their ideal lipid profiles, in what time frame, on which drugs. I want to see patient feedback on education about diet and lifestyle counseling, waiting times for appointments, waiting times in the waiting room, callbacks for lab results and questions. For my oncologist, I want to know her experience with my type of cancer, side effect incidence and profile for the chemotherapy administered, survival rate, pain management policies, availability of investigational protocols if needed, who’s on call when she’s gone or on the weekend.

As the patient, I find the thought of this kind of access to information exhilarating; as a physician, I find it highly problematic. It is not that I believe I would fare poorly by the release of such information — on the contrary, I am inclined to believe I would do well in most areas in contrast to my peers (which is no doubt my large ego at work). But I would fare poorly in other areas, which is an uncomfortable but necessary consequence of making this kind of information available. Oddly enough, this is not why the thought of such openness is frightening. The fear comes primarily from concerns about how the information is acquired, and how it will be used.

In the realm of the personal, transparency cannot take place without certain preconditions. First and foremost, one must be willing to be open and honest about both strengths and weaknesses–a vulnerability which can engender significant fear. This requires a willingness to admit one’s imperfections and shortcomings–which runs hard against both individual pride and denial, which are manifest in all of us. Secondly, the disclosure of potentially risky information about oneself must occur in a safe environment–the information must not be used against me, and must be protected from those who would so use it. And lastly, the point of such openness is the willingness to change–no point disclosing such information unless there is a desire to improve.

At the professional level in health care, the same conditions apply: willingness to disclose information openly and honestly, safe handling of information without retribution, and willingness to alter behavior based on such disclosure. There are significant problems with each of these preconditions for transparency in health care, however. Of the three, the elephant in the living room is the second: is there a safe way to release and distribute this information, so that it can be useful to patients (and to health care analysts and policymakers) without it coming back to bite hard at health care providers and institutions? I think the answer is a qualified “yes.” The willingness to release the information, and the ability to change behavior based on this information, will depend in large part on how the health information is handled.

Several criteria seem to me to be critical for the safe release and handling of detailed health statistics from providers:

  • The information must be stripped of all patient-identifying information.
  • The released health information must not be discoverable; i.e., it cannot be used in lawsuits against individuals or institutions.
  • The information must be excluded from medical disciplinary processes.
  • The information must be detached from decisions about reimbursement by third party payors and federal health programs.
  • The information must be broad-based: ideally most or all providers in all specialties.
  • Data comparisons of providers should be specialty-specific.

Physicians must also be able to comment on or amend this information. If my patient has surgical wound infection, but is diabetic and on prednisone, I need to be able to provide these details. Patient non-compliance, co-morbidities, or other circumstances determining treatment results are necessary details to flesh out the raw data about complications or other bad outcomes.

Without such safeguards, providers will be very reluctant to release such health care data. But there are other barriers to willingness as well. First and foremost, every physician reading this is asking, “Who’s going to generate and report this voluminous information?” The idea of massive reams of paperwork reporting clinical outcomes on most or all of their patients will drive a physician to early retirement, or the bottle–or both. This–along with concerns about who will access and use the data–will be the biggest hurdle to implementing any such system.

But it may be time for a reality check: pay-for-performance — a freight train already rumbling toward your medical practice — is going to require exactly this kind of information. And even if this payment scheme proves ineffective–as capitation, vertical integration, HMOs, and a host of other failed payment ideas have–once the data collection is in place, it will never go away. We should be thinking of how to do it correctly, so it benefits both our patients and our profession.

The use of an electronic medical record would greatly facilitate this data exchange. But EMRs have limited penetration in the health care arena–less than 15% of physicians use one. But recent decisions by Medicare to provide free, open-source EMR software to physicians–based on the robust system in use in the Veteran’s Administration hospitals and clinics, may well breach the dam of costs and vendor longevity which have proven impediments to widespread adoption of EMRs by physicians. Since this software is open-source, modules for the necessary data tracking and transmission could be developed with relative ease.

Who will manage and control this data? Government and insurance companies want this control, but here’s a better idea: rather than have a mandatory, government-run repository geared toward micromanaging health care, why not have a private organization or business manage the data, funded perhaps in part by government, but largely by subscription. Patients, health care researchers, media, third-party payers and government would subscribe to this service, with various levels of subscription fees based on the quantity and detail of information needed. These fees would support both data collection and IT costs, and allow physicians to be paid for providing the information, with contractual agreements allowing auditing to ensure that data provided by physicians was accurate and complete, and to discourage reporting fraud. Mandating that physicians provide detailed health information to government and insurers — while paying them less–will be as popular as a cellophane burqa in Mecca. Paying physicians to provide reliable information which will benefit their patients and their profession is a much more palatable and attractive concept.

Consider the benefits of having this quantity of health care data available. Most medical studies are performed using a few hundred, or at most a few thousand patients. Imagine the value of having access to the outcomes of millions of patients undergoing surgery, or management of heart disease, or cancer prevention. This is the power and potential of transparency. Will physicians and health care change as a result? I cannot imagine that the change would be anything less than tectonic. Competitive pressures will encourage physicians to improve their care. Large data sets will make it far easier to determine what works and what doesn’t, providing vastly more raw data than that currently provided by the medical literature–and without the potential conflicts of interest from pharmaceutical or medical device company sponsorship of such studies.

Anyway, that’s my dream. Like Samuel Coleridge, perhaps I have taken one too many puffs on my opium pipe, and shall awake to find this wishful thinking and fanciful visions. But before we can change, we must first begin to dream. We as health care providers can watch our patients search the web — where fruitcake herbal cures and quackery have equal voice with legitimate health care — and we can continue to base our treatment decisions on limited information — or we can begin to provide extensive health information ourselves, to improve our care and that of our patients.

Seems like an easy choice to me.

Quality in Medicine – Pt I

IrisA commenter on my previous post on pay-for-performance asked an excellent question:

So, if it were your job to implement a “quality assurance” system in health care (or specifically in your part of the health care system), where would you start?

Whining is easy in medicine — as in most areas of life — and I generally try to avoid posts which don’t provide some answers or direction to problems detailed. Being part of the problem is easy; being part of the solution more challenging. So I’ll try to collect a few thoughts on how best to achieve quality in medicine. These are very much “If I were King” solutions–in real life, they may pose insurmountable difficulties from an implementation, political, or practical standpoint. But it’s time to pencil outside the lines–our health care system is in serious trouble in many ways, and we cannot keep doing what we are doing forever before a true crisis arises. So here’s a few principles which I believe would make a major difference in health care quality and delivery.

First, let me say a few final words about pay-for-performance, discussed in my previous post. This whole concept strikes me as a solution looking for a problem. Is there really evidence that a significant quantity of the health care paid for by federal programs or private insurance is substandard, and needs incentives to improve? If there is a significant percentage of such care (and who has determined this?), is it the role of government or insurance carriers to improve this quality through their payment mechanisms? And if it is, how likely is it that they can achieve this goal? It would seem that clear answers to such questions should be given before launching out on a potentially gargantuan overhaul of health care reimbursement, with highly unpredictable results.

Even if the answers to the above questions are affirmative (a dubious assumption, at best), quality depends not merely on the facility or health care provider’s performance as individuals (and therefore potentially changeable by incentives), but in many cases depends on socio-economic factors not under the influence of payer incentives. For example, if you are hospitalized in a major city for severe pneumonia or asthma, and require a ventilator to breathe, you will very likely be cared for by a specialist in pulmonary medicine — or at least by an internist with extensive experience in such care. The nurses in your intensive care unit will have abundant experience with ventilators, sophisticated monitoring equipment, and the care routines (regular suctioning, for example) which greatly reduce your risk of complications and increase your chances for a good outcome. If you are hospitalized in a small town hospital, many of these advantages may not be available. How will pay-for-performance change the lack of availability of a pulmonary specialist, the limited nursing experience with ventilator care, unavailability of some monitoring equipment, and other liabilities which are more more likely to be a problem in a small community hospital?

Secondly, when Medicare and third party insurance companies start talking quality, you’d better lose weight, exercise, stop smoking, and hold on to your wallet: what really drives their locomotives is costs, not quality. The underlying presumption here is that by improving quality by monitoring adherence to standards, the costs of health care will decrease. But this is by no means true in every instance; in fact, higher-quality care is commonly more expensive — often quite a bit more. This reality is one of the main factors driving up health care costs. An MRI is a vastly better tool for diagnosing a ruptured disc than a spinal x-ray or a myelogram — and also far more expensive. Minimally invasive surgery which speeds your recovery often involves expensive technology–endoscopes, digital cameras, costly video systems–which exceeds the costs of traditional surgery. New drugs and chemotherapy are much more effective than older ones–and frequently stunningly expensive. We know that preventive medicine works well in some areas — good prenatal care, weight loss, exercise, drug and alcohol avoidance, smoking cessation — but how will paying providers more achieve these notoriously difficult changes in patient behavior?

I have tried to think of any health problem, any type of patient for whom I would significantly change my medical or surgical management based on a financial incentive — I can honestly say I cannot think of a single instance. This is not because my medical management is perfect by any means, or because I am a superior moral being — I most certainly am not–but rather that as a physician I constantly strive to do the best thing for my patients. Part of this drive is idealistic, part ethical, professional, and moral, and part simply the satisfaction and gratification of seeing my patients do well, of a job well-done. I do not believe I am unique in this regard: I am quite sure most physicians operate out of similar motives. Financial incentives to alter care, if anything, exert a pull toward providing care which is less ideal–either for the patient or for society as a whole. The only time I have to pause and ask myself whether I am doing the best thing for a patient is when there is a financial incentive to follow a certain course: am I doing this because of money, or because it is the best thing for the patient? Such distinctions can be surprisingly difficult to discern–my motives are best tested when I go contrary to financial incentives to do the right thing.

Well, enough on pay-for-performance for now. I had planned a single post to put forth some ideas on achieving quality in health care, but I have barely touched on the topic. This topic will work best, it appears, as a series of posts. Here’s a summary of some topical areas I am planning on covering:

  • Transparency–why is it easier to buy a used car than to select a physician?
  • Reforming the legal system–how the medical malpractice system degrades medical quality
  • Reforming the payment model–financial incentives which undermine quality, and how time often equals quality
  • Peer review–why it doesn’t work and what to do about it

I suspect other topics may come along as this evolves, so stay tuned. And I’d love to get feedback on these ideas from both health care providers and the folks who see them.

And lest you be bored by health care topics, coming soon will be more on the new Narrows Bridge construction, a puppy update, as well as special treat: Tall Ships Tacoma. Take care, and God bless.

Pray for Performance

GivernyThere has been growing interest in a significant change in payment methodology in health care, one called pay for performance. It’s a simple and alluring concept: physicians and other health care organizations will be paid better when their care meets or exceeds certain as-yet-unspecified quality indicators. The medical blogs, such as Medpundit, DB \'s Medical Rants, and Galen’s Log, have been discussing this issue for a while. In general, there is some interest among physicians in the idea, although the wariness is high. Most concerns revolve around the variables in the physician-patient relationship (the non-compliant patient, the patient who cannot afford their medications), the specifics of the quality standards, and concerns about another bureaucratic boondoggle adding mountains of paperwork to physicians’ desks in return for meager increases in reimbursement–or no reimbursement, with cuts for those not meeting the QA standards. Access issues have also been discussed: will physicians start avoiding or dumping their higher-risk or less compliant patients in such a system? The law of unintended consequences (a corollary of the Law of Rules) seems certain to result in unexpected–perhaps disastrous–sequellae to such a large systemic change in payment for health care services.

A recent situation raises another aspect for concern under this payment system: the problem of systemic variables. Consider the following scenario which recently affected the care and outcome of one of my patients:

  • Local hospital–a member of a small non-profit chain–has been contracting with a single service provider for mobile surgical laser services. High quality equipment, superb technicians, prompt service and excellent outcomes are the norm for this business. Business provides service at only two of the chain’s three hospitals, however, because of logistical and distance constraints.
  • Hospital middle-managers decide, for reasons of contract pricing and simplicity of negotiations throughout the chain, to contract with a larger competitor for laser services. This process occurs at the administrative level only, with no input from the clinicians who utilize the services. It is presented as a fait accompli. Numerous physicians complain, but are assured that this is a high quality service and that their feedback is “valuable” and “appreciated”. But no trial period is written into the multi-year contract; it’s a done deal.
  • Uncomplicated cases appear to go smoothly with the new service: so far, so good. Techs are spotty but generally competent.
  • Mr. Jones (not his real name), an 81-year-old gentleman, presents to me with blood in the urine; evaluation reveals an enlarged prostate and a very large bladder stone–larger than a golf ball. Surgery is scheduled, requesting the laser service, which will be used to break up the stone, avoiding open surgery. He is a relatively high-risk surgical candidate, with a history of recent heart attack and angina.
  • The OR scheduler notifies the laser service, but does not mention the stone is a large bladder stone, rather than a much smaller ureteral stone. The laser service also does not ask about the type or size of stone.
  • Patient undergoes anesthesia, and laser service arrives–with a woefully underpowered laser. After a few minutes of use at full power, the laser overheats and shuts down, requiring 5-10 minutes to cool before restarting. This happens repeatedly. Not dangerous as such–but very time-consuming.
  • The procedure–normally taking 30-45 minutes, takes over 2 hours to complete. Consideration for early termination of surgery is given, but this would require another surgery–with the risks of another general anesthesia in a high-risk patient–and the risk is judged to outweigh the benefit of stopping surgery.
  • Because of the markedly prolonged surgery, the patient absorbs a large amount of hypotonic fluid–a problem which never occurs in shorter cases. This results in low serum sodium and other problems of blood electrolytes, hemolysis (breakdown) of red cells, acute renal failure, mental status changes, several consultants required to manage the resulting problems. The patient leaves the hospital 12 days later–rather than the next morning, as would be the norm. Fortunately, there were no permanent medical impairments.
  • Cost of hospitalization is at least 10-12 times the norm. In any QA system, this qualifies as a very poor outcome. Had I terminated surgery early, he would have gone home the same day, but required another surgery for the same problem–another adverse outcome–and perhaps had cardiac complications under a second anesthesia. Checkmate.

Herein lies one of the many difficulties with the concept of pay for performance: not merely the variables of physician or hospital care, or patient compliance, or co-morbidities (other health problems affecting the management of the primary problem), but systemic problems which are entirely outside the control of the health care provider, and which are notoriously difficult to track down and eliminate.

Let’s take the above case as an example. In any well-run business, the process would go something like this: You are evaluating a change in contracted service, required in the production of your primary product, to see if you can cut costs while improving–or at least not damaging–the quality of your core product. You take historical information about the costs of your existing service, both direct and indirect. In other words, you look not only at the direct costs of paying for the product or service, but at the costs incurred by using this service–how many defective items need to be returned? How often did the contracted business fail to provide timely service, or provided inferior quality or defective goods? What are the costs associated with such shortfalls, and do they fall within an acceptable range?

In health care, however, evaluation mechanisms such as these do not exist–or when they do, function imperfectly, examining at only a small portion of the larger process. The mechanisms are further constrained by the nature of health care. You may accept a 1% rate of defective widgets components, knowing that your internal QA will catch most of those and your core widget product will remain at acceptable quality. How many additional deaths or complications are you willing to tolerate when changing medical services or supplies, in order to save money which may be used to provide care to other patients? Who is even willing to do this kind of analysis, knowing that hordes of lawyers are hovering, panting at the opportunity to find evidence that the evil greed of your hospital contributed to Aunt Nellie’s early demise?

My patient’s case illustrates this problem in multiple ways. The decision to change surgical laser services was made at an administrative level–no physician who actually uses the service was consulted. The contract change was made on the basis of up-front costs (how much is paid for each instance of the service) and administrative efficiency (having a single contract covering multiple hospitals rather than multiple, separately-negotiated contracts). The contract will likely have some clauses paying homage to “quality of care”–a pure CYA maneuver, which does not specify what constitutes “quality” care. Good thing, too–since the laser service has little or no access to outcome data for the services it performs. In over 15 years of using contract laser services at multiple hospitals, I have never once been asked by these services–or by the hospital–to provide outcome data, such as complications, mechanical problems during surgery, re-operation rates for poor outcomes, etc. Even if they started today demanding such accountability from contract services, there would be no historical data with which to assess the quality of a new service provider in contrast to the old.

At the clinician and hospital level, quality feedback breaks down again. Several years ago, a local hospital decided to change brands of urinary catheters–a medical supply used in great quantity in hospitals, where the savings of even a dollar or two per unit can result in millions of dollars annually in cost reductions. On a day-to-day basis, the minor reduction in product quality was insignificant: they worked fine for Aunt Millie when she need a catheter for a few days to monitor her fluids accurately while managing her congestive heart failure. But when Uncle Ernie had prostate surgery, and developed a few small clots from bleeding, the inexpensive soft-walled catheters failed miserably, their sides collapsing like a shantytown in an earthquake when irrigated–greatly increasing the chances that old Ernie would have to be returned to surgery to be rid of his clots, rather than have a simple procedure by the nurse in his hospital room. It’s the outliers that kill you in these situations, and they’re devilishly hard to predict when a middle-manager sits down to save a few cents on a high-volume supply item. And even when they’re detected, they are easy to blame on other factors–the patient’s condition, nurse or physician error or neglect, etc. And they’re even harder to change once problems arise.

The urologists who need the higher-quality catheters on a regular basis screamed bloody murder from the outset: their patients’ care was hugely affected by this seemingly benign change–but no one was listening. Or perhaps more accurately: no one was responding. The hospital set up an 800 line for physician complaints–but years later, the lower-quality catheters remain a stock item. Like the button on a streetlight at the crosswalk, pressing it made you feel like you were doing something–but the light changed at the same time regardless of how often you pressed. The physicians who did complain were dismissed as troublemakers, or whiners. No one knows how many patients suffered needless discomfort, or unnecessary returns to surgery, because of this simple, seemingly cost-effective change–which has almost certainly cost the hospital far more than it saved in hidden costs, not to mention harming patient care quality. And that’s exactly the problem: no one knows.

So there you have it–pay for performance is a noble idea destined to fail in the health care system. The necessary means and mechanisms do not exist to monitor quality in a whole host of areas–and in areas where they do, conflicting factors such as patient privacy, medical liability risk, and the inertia and nearsightedness of large organizations will thwart any progress toward actual quality improvements using financial incentives. Slapping a “free market” reform as a band-aid on the huge, micromanaged, economically-handcuffed health care system dinosaur is an invitation to create a new Jurassic Park. But of course, that is unlikely to prevent it from taking place.

Coming soon, to a hospital near you…

HIPAA-titis

Clown fishSend in the clowns.

As anyone in health care–or anyone who has received health care recently–knows, there are new federal privacy laws in place. These are referred to as HIPAA, for the federal legislation passed to insure portability in health insurance and privacy in health information. Well-intentioned and useful in many regards–it includes much-needed standardization of forms and electronic communication between providers and insurance carriers, for example–it nevertheless has caused significant changes in the way medical practices and hospitals handle patient privacy and health care information. And, as should be expected with massive federal legislation, there are, shall we say, some unintended consequences. I had the misfortune of falling into just such a snare recently.

Much of the surgery I perform is done on an outpatient basis–patients come in the day of surgery, have their procedure, and typically go home an hour or two later. In days past, prior to the implementation of HIPAA, when a patient reached the recovery room after surgery and became stable, their family was allowed into recovery to visit them. HIPAA did away with this practice, because of concerns that family would recognize another patient undergoing surgery that day, violating their privacy. Alternatively, the physician would go to the waiting area, and call out the patient’s name, in order to locate and talk with the family. This, as you can imagine, is a no-no now as well, but in practice it all worked quite nicely. Private rooms were always available when needed, when the news was bad, emotions high, or a long, detailed discussion required.

To eliminate the risks of accidently revealing confidential medical information or patient identity, a system of aliases was developed by our local hospital. Patients and their families were assigned a letter of the alphabet on admission, and a master sheet of patient names was given to the nursing staff and volunteers in the waiting area. So you were no longer Mr. Jones, but now were the letter “a”. As our ambulatory surgery suite is rather busy, families would go to double and triple letters if needed, such as “double-e” or “triple-m”. When the patient came out of surgery, the secretary in recovery room, who held the name-letter key, called the volunteers, giving them the name and the letter. The volunteers then announced the letter, the family, repsonded, and were placed in a private room to await the doctor. Nice, simple system, seemingly bulletproof … seemingly.

An elderly gentleman had surgical removal of a bladder cancer by me, using endoscopy–a common and generally uneventful surgery, which is often curative, as many bladder cancers are not very aggressive and can be totally removed by shaving them out of the bladder. After writing the postoperative orders and talking briefly with the partially-awake patient and his nurse, I headed out the the waiting area to talk with his family. They were waiting, as is customary, in the private conference room.

I introduced myself–not having met the patient’s family before (not an unusual circumstance)–and began to discuss his surgery. I reassured them that surgery had gone well, and that he had not had any problems with the procedure or anesthesia. They smiled and seemed relieved. I told them that I believed the cancer was totally removed, although the report from the pathologist several days later would provide the full answer. They were particularly pleased by this news, and seemed physically to relax a little. I advised them that this type of cancer tended to recur, and that he would need periodic scoping in the office to monitor for such an occurrence. They smiled, although seeming a little troubled by this thought (who wouldn’t be?). There smiles became more plastic, although I failed to notice the change. I then assured them that he would likely be stable enough to go home later in the day, without a bladder catheter.

The smiles froze, morphing into a look of pure confusion: “Home today?? We thought he was supposed to stay in the hospital for 4 or 5 days!”

That ghastly knot tied itself tightly, deep in the pit of my stomach, as the light switched on: “Yes–what surgery did you think he was having?” “He was having his colon removed.” Ooh-kaaay…how am I gonna talk myself outta this one?? I’ve been talking to the wrong patient’s family.

Fortunately, that proved easier than it could have been, due to the graciousness of the family with whom I was speaking. They even expressed their gratitude that my patient was doing well, and I wished them the best with their outcome. It could have been far, far worse.

It is not entirely farfetched that the wrong family could have gotten some very bad news not meant for them, which could have triggered difficult or dangerous actions: calls to other family members, decisions to fly from afar, hasty financial decisions, or at the very least a great deal of emotional trauma–not to mention legal implications, as lawsuits have been filed–and won–for less emotional trauma than this.

This is an excellent example of the Law of Rules: rules and laws passed to solve one problem have unintended consequences, which are not infrequently worse than the problem being solved. In this case, the problem solved was minor and infrequent: the possibility that someone might recognize another patient, or overhear some relatively sensitive health information. In my experience, most physicians were careful about such disclosure prior to HIPAA (although there were no doubt exceptions), and even should such disclosure occur, it would be hard to prove that harm comes from the majority of such breeches. The solution to what in my experience was a very minor problem has, and will continue to have, some very serious consequences.

The alias system which most health care facilities have implemented to comply with this law significantly increases the risk of patient identification errors, in my view. In the hospitals in which I work, patient names are no longer posted on a central board at the nursing station–only their initials. Consider the tired, busy nurse giving a medication to the patient in bed 102, Carrie Fisher (initials CF), who is a few rooms away from Carl Foobar (initials CF). Granted, checks and balances are in place–double checking patient, chart, medication, and patient’s armband, which has their name–but one simple and important check has been removed: the easy ability to identify a patient by name. Names are no longer posted on surgery schedule boards as well–it is not hard to imagine the disastrous outcome of an ID mishap here.

I am not dismissing the importance of patient privacy and the privacy of sensitive health information by any means; if anything, the importance of such protections has been underemphasized greatly in the past, and HIPAA addresses some serious issues. But far more detailed and sensitive information is allowed to flow freely under the same law: to your insurance carrier.

Both federal and private health insurers generally require a release of information to verify that services billed by providers have been appropriate and accurate. This means they may access, not just detailed diagnosis and service codes, but also the release of physician notes, operative reports, lab and pathology results–virtually everything about you in your health record, identified by name, SSN, birthdate, and other personal details. Insurance carriers are also required to protect this information, and no doubt make good efforts to comply–but they large bureaucracies, staffed by fallible–and occasionally nefarious–employees. I don’t know about you, but I’d rather have my neighbor accidentally overhear about my surgery results than to have every sensitive demographic and medical tidbit I own pass through the caring hands of the friendly insurance clerk who just loves to chat around the water cooler, and later tell her boyfriend about the fascinating patient she read about today.

So what’s the answer? I suspect we’re just going to have to live with this flawed legislation, since laws of this nature always get more detailed (laws to handle the problems the laws themselves created), rather than simpler with time. But if I were king (a scary thought, that), here’s what I would do:

  • Dump the silly requirements that patients and their families be anonymous, unless they specifically request it; the risks outweigh the benefits. Move back to common sense, use patients’ names, perhaps leaving some censure for egregious violation of patient privacy.
  • Require that all information passed to government and insurance companies be identified by a unique ID only, with no other patient identifying information. Insurance company employees could access personal data only on a “need to know” basis, with careful logging of all such access.

As for me, I’m going to make darn sure I know which family I’m reporting to.

UPDATE: Courtesy of a reader, I am alerted to my dysfunctional acronymania: Changed from HIPPA to HIPAA. Thanks.

The Revenge of the Fifth

MercuryIt seemed like such a great idea at the time…

His name is Darin. Of course, that’s not his real name, but he is a casual friend of mine. A bright young man, possessed of good looks, a warm smile, and a soft-spoken demeanor. Darin is brilliant with computers–not merely competent, as many are, but a true geek, tear-’em-down-and-rebuild-’em smart, fearless in the depths of sockets and motherboards, Windows registries and Unix terminals. A true success story, you might say, bright future, make some girl very happy. But Darin was toolin’ down the freeway of goin’ nowhere fast.

You see, Darin had a little problem: a fondness for the grape and the snort which always seemed to get the best of him. Not that he didn’t try: he was in and out of AA rooms more often than a pastor’s wife at church socials, always returning beaten and remorseful, determined to do better this time. “This time” rarely lasted more than a few weeks or months.

Darin was quiet, but a man of passion. He was always in love. Intoxicated with the flush of a new romance, that rush of euphoria so real yet so maddeningly transient. Each new girl was “the one”, but nights of passionate, drug-enhanced sex soon proved impotent to overcome the waning charm of Miss Demeanor, the rumpled sheets, and the rumblings of his restless soul. Before long he was again cruising for some other codependent wench, herself seeking a sodden soul to save. Like an ugly tie wrapped up pretty under the Christmas tree, Darin’s package looked good at first glance, but he quickly proved to be a daddy’s nightmare: “no phone, no food, no rent”, as the song goes. Soon he was once again welcome only in his mother’s house, with whom he could do no wrong.

Unfortunately, the same could not be said of Darin: someone did him dirty, stiffing him out of a good deal of cash, and forgiveness was not one of his many charms. The details are murky: a computer built or repaired, promises made but unkept. There was much lighthearted chatter at the coffee houses–was it Darin’s fault, or his nemesis? No matter–like a quiet bubbling cauldron in a witch’s lair, Darin was cooking up his favorite dish: a rip-roaring resentment. Not visible on the outside, of course, but raging like a Jerry Springer slug-fest in the conference rooms of his mind. It was the perfect mixed drink: a perceived injustice blended with that unique obsessiveness which addicts possess seemingly in endless measure.

It is not clear when the brainstorm struck–an idea so brilliant, so flawless, that it would right all injustices and settle all disputes: Darin would break into his detractor’s home and steal back the computer which tortured him so. No mere larceny, mind you, but the picture-perfect crime, a liberation to rival Paris in ’45. Carefully timed when the enemy was not at home, staged so not even Sherlock Holmes would presume that Darin might be the perpetrator. Sweet revenge, sweetly executed.

Like tightly-written computer code, Darin’s nimble mind set the parameters, checked the variables, and executed commands in a tight loop whose efficiency and speed wasted no cycles. The Day of Vengeance arrived, with only one small ingredient missing: courage. But Darin had that algorithm factored as well: a fifth of Vodka erased all fears, drowning all doubts. By stealth of night, with watches synchronized and bottle drained, the window glass parted to usher him to glory. The mission was underway.

No one knows whether anyone heard the shattering of glass, but despite his stealth the disruption somehow caught the notice of neighbors. When the police arrived, the cause of the disturbance became evident: there was Darin, passed out on the floor, beside the untouched computer he coveted. Fate had struck a cruel blow–his celebratory blackout had arrived on the wings of Mercury rather than with the spoils of Mars. He awakened to handcuffs and an open-ended reservation at the Gray Bar Hotel.

All good stories–even true ones–should have a moral, but Darin’s story eludes easy lessons. He was taken by that peculiar insanity which alcoholics possess in abundance, even while sober. When Darin hatched his master plan, he was not drinking, but engaged in one of his countless attempts to clean up. For the alcoholic, the danger lies not in the bottle, but in the brain. The sane among us make mistakes, to be sure: wisdom comes from experience, and experience often comes from lack of wisdom. But facing the inevitable consequences of bad choices, we generally rearrange our lives and priorities to ensure that such a travesty does not happen again. Not so the alcoholic. Obsessively repeating behavior long ago proven destructive, he nevertheless pursues the optimism of denial which says the next time will be different. This baffling disconnect from reality cascades from farce to tragedy, as the alcoholic perceives no problems other than those bastards who are out to get him.

There is much resistance to the idea that alcoholism and addiction are a disease. Much of this comes from conservatives, and those of religious conviction, whose proper emphasis on personal responsibility and moral rectitude sees in the alcoholic only reckless hedonism and wanton irresponsibility. These qualities the addict has in spades, but less obvious is the driving obsessive compulsion, the thought disorder which is their engine. The medical evidence for the disease model of alcoholism and addiction is deep and wide, as I have detailed in part elsewhere (see also this and this for more on the topic). The liberals have this one right: the alcoholic is a victim of his or her genetics, and the addition of a mind-altering drug–which one is probably moot–starts a swirling whirlpool whose vortex holds only misery, destruction and death. Not many survive its power.

Yet defining deviance from normal as disease also has its risks: the proliferation of social disorders redefined as diseases seems endless, and points to the abrogation of all responsibility for one’s actions. It can become laughable at times. Several years ago, I saw a patient, a healthy, athletic women in her 40’s, who was covered under Medicare. Medicare covers the elderly, but also those with chronic renal failure and the disabled, so I inquired as to the nature of her disability. I was informed she had “hyperactivity disorder.” Attention deficit hyperactivity disorder (ADHD)? No, just hyperactivity disorder–she was restless. A black belt in Karate, she traveled around the country constantly, competing in tournaments and teaching seminars. She was disabled, in short, because she couldn’t sit still. No “cripple” jokes around her, no siree, unless you wanted your skull crushed by a foot you’ll never see coming.

The concern about labeling alcoholism, or any other behavioral disorder, as a disease is the tendency to tolerate and rationalize the resulting behavior, to use the “disease” label as an excuse for selfish, self-centered behavior destructive to one’s self, society, and those around you. The issue is not disease or no disease, but rather what drives the behavior and what can be done to change it.

The paradox about 12-step programs–which have the only reliable track record for successful recovery from addiction–is that they emphasize the disease as the problem, and honesty, integrity, and personal responsibility as the solution. They do not excuse the behavior while admitting the disease, and this blend of honesty and humility, acceptance and tough love, works like nothing else. It is, as recovering alcoholics are quick to point out, a spiritual program: the Catch-22 of a body which craves alcohol without limit and a mind which denies the resulting problems cannot be solved any other means.

But as any recovering alcoholic will tell you, the problem is not the booze; it is not even the obsessive, irrational mindset which drives the drinking. Both these problems are symptoms of an underlying decay, one of spiritual dimensions, characterized at its core by extreme self-centeredness. The pursuit of happiness by feeding this monster creates not the promised joy but rather pain and emptiness. Alcohol hides that pain for a while, until the monster, growing ever stronger by its constant feeding, kills its host spiritually, emotionally, and often physically.

But addiction is hardly alone as a symptom of this dark core. The list of destructive behaviors arising from its belly is endless: obesity, sexual promiscuity, compulsive overwork, materialism, computer obsession, gambling, the pursuit of beauty over character, the lust for money and power. Some may be biologically-driven; some learned behaviors or dysfunctional coping. All seek to fill a hole with no bottom, providing the wrong salve for the pain, and more of the same when the salve makes the wound fester.

And what of Darin? In many ways he is fortunate: his life is on hold, and forced reflection and change are his for the taking–should he choose to grasp them. The price is high; it might have been much higher. Yet his choice–and ours–is the same: feed the monster, or turn life over to One whose burden is light, who alone can fill that deep inner void.