The Children Whom Reason Scorns

Nazi German euthanasia posterIn the years following the Great War, a sense of doom and panic settled over Germany. Long concerned about a declining birth rate, the country faced the loss of 2 million of its fine young men in the war, the crushing burden of an economy devastated by war and the Great Depression, further compounded by the economic body blow of reparations and the loss of the German colonies imposed by the Treaty of Versailles. Many worried that the Nordic race itself was threatened with extinction.

The burgeoning new sciences of psychology, genetics, and medicine provided a glimmer of hope in this darkness. An intense fascination developed with strengthening and improving the nation through Volksgesundheit–public health. Many physicians and scientists promoted “racial hygiene” – better known today as eugenics. The Germans were hardly alone in this interest – 26 states in the U.S. had forced sterilization laws for criminals and the mentally ill during this period; Ohio debated legalized euthanasia in the 20’s; and even Oliver Wendall Holmes, in Buck v. Bell, famously upheld forced sterilization with the quote: “Three generations of imbeciles are enough!” But Germany’s dire circumstances and its robust scientific and university resources proved a most fertile ground for this philosophy.

These novel ideas percolated rapidly through the social and educational systems steeped in Hegelian deterministic philosophy and social Darwinism. Long lines formed to view exhibits on heredity and genetics, and scientific research, conferences, and publication on topics of race and eugenics were legion. The emphasis was often on the great burden which the chronically ill and mentally and physically deformed placed on a struggling society striving to achieve its historical destiny. In a high school biology textbook – pictured above – a muscular German youth bears two such societal misfits on a barbell, with the exhortation, “You Are Sharing the Load!–a hereditarily-ill person costs 50,000 Reichsmarks by the time they reach 60.” Math textbooks tested students on how many new housing units could be built with the money saved by elimination of long-term care needs. Parents often chose euthanasia for their disabled offspring, rather than face the societal scorn and ostracization of raising a mentally or physically impaired child. This widespread public endorsement and pseudo-scientific support for eugenics set the stage for its wholesale adoption — with horrific consequences — when the Nazi party took power.

The Nazis co-opted medicine fully in their pursuit of racial hygiene, even coercing physicians in occupied countries to provide health and racial information on their patients to occupation authorities, and to participate in forced euthanasia. In a remarkably heroic professional stance, the physicians of the Netherlands steadfastly refused to provide this information, forfeiting their medical licenses as a result, and no small number of physicians were deported to concentration camps for their principled stand. As a testimony to their courage and integrity, not a single episode of involuntary euthanasia was performed by Dutch physicians during the Nazi occupation.

Would that it were still so.

The Netherlands was the first country in the world in which euthanasia and assisted suicide was legally performed, having fully legalized the practice in 2006 after several decades of widespread illegal–but universally unpunished–practice. The Dutch have come into the public consciousness periodically over the past 30vyears, initially with the consideration of assisted suicide laws in Oregon, Washington, Michigan and elsewhere in the early 90’s, and again with their formal legalization of physician-assisted suicide and euthanasia in 2001. Once again they are on the ethical radar, with the disclosure last week of the Groningen Protocol for involuntary euthanasia of infants and children.

The Groningen Protocol is not a government regulation or legislation, but rather a set of hospital guidelines for involuntary euthanasia of children up to age 12:

The Groningen Protocol, as the hospital’s guidelines have come to be known, would create a legal framework for permitting doctors to actively end the life of newborns deemed to be in similar pain from incurable disease or extreme deformities.

The guideline says euthanasia is acceptable when the child’s medical team and independent doctors agree the pain cannot be eased and there is no prospect for improvement, and when parents think it’s best.

Examples include extremely premature births, where children suffer brain damage from bleeding and convulsions; and diseases where a child could only survive on life support for the rest of its life, such as severe cases of spina bifida and epidermosis bullosa, a rare blistering illness.

The hospital revealed last month it carried out four such mercy killings in 2003, and reported all cases to government prosecutors. There have been no legal proceedings against the hospital or the doctors.

While some are shocked and outraged at this policy of medical termination of sick or deformed children (the story has been widely ignored by the mainstream media, and has gotten only limited attention on the Internet), it is merely a logical extension of a philosophy of medicine widely practiced and condoned in the Netherlands for many years, much as it was in Germany between world wars. It is a philosophy where the Useful is the Good, whose victims are the children whom Reason scorned.

Euthanasia is the quick fix to man’s ageless struggle with suffering and disease. The Hippocratic Oath — taken in widely varying forms by most physicians at graduation — was originally administered to a minority of physicians in ancient Greece, who swore to prescribe neither euthanasia nor abortion — both common recommendations by healers of the age. The rapid and widespread acceptance of euthanasia in pre-Nazi Germany occurred because it was eminently reasonable and rational. Beaten down by war, economic hardship, and limited resources, logic dictated that those who could not contribute to the betterment of society cease being a drain on its lifeblood. Long before its application to ethnic groups and enemies of the State, it was administered to those who made us most uncomfortable: the mentally ill, the deformed, the retarded, the social misfit. While invariably promoted as a merciful means of terminating suffering, the suffering relieved is far more that of the enabling society than of its victims. “Death with dignity” is the gleaming white shroud on the rotting corpse of societal fear, self-interest and ruthless self-preservation.

It is sobering and puzzling to ponder how the profession of medicine – whose core article of faith is healing and comfort of the sick – could be so effortlessly transformed into a calculating instrument of judgment and death. It is chilling to read the cold scientific language of Nazi medical experiments or Dutch studies on optimal techniques to minimize complications in euthanasia. Yet this devolution of medicine, with some contemplation, is not hard to discern. It is the natural gravity of man detached from higher principles, operating out of the best his reason alone has to offer, with its inevitable disastrous consequences. Contributing to this march toward depravity:

 ♦ The power of detachment and intellectualization: Physicians by training and disposition are intellectualizers. Non-medical people observing surgery are invariably squeamish, personalizing the experience and often repulsed by the apparent trauma to the patient. Physicians overcome this natural response by detaching themselves from the personal, and transforming the experience into a study in technique, stepwise logical processes, and fascination with disease and anatomy. Indeed, it takes some effort to overcome this training to develop empathy and compassion. It is therefore a relatively small step with such training to turn even killing into another process to be mastered.

 ♦ The dilution of personal responsibility: In Germany, the euthanasia of children was performed with an injection of Luminal, a barbiturate also used for seizures and sedation of the agitated. As a result, it was difficult to determine who was personally responsible for the deed: was it the nurse, who gave too much? The doctor, who ordered too large a dose? Was the patient overly sensitive to the drug? Was the child merely sedated, or in a terminal coma? Of course, all the participants knew what was going on, but responsibility was diluted, giving rationalization and justification full reign. The societal endorsement and widespread practice of euthanasia provided additional cover. When all are culpable, no one is culpable.

 ♦ Compartmentalization: an individual involved in the de-Baathification of Iraq said the following:

There is a duality in Baathists. You can find a Baathist who is a killer, but at home he’s completely normal. It’s like they split their day into two twelve-hour blocks. When people say about someone I know to be a Baathist criminal, ‘No, he’s a good neighbor!’, I believe him.

Humans have the remarkable ability to utterly separate disparate parts of their lives, to accommodate cognitive dissonance. Indeed, there is probably no other way to maintain sanity in the face of enormous personal evil.

 ♦ The banality of evil: Great evil springs in countless small steps from lesser evil. Jesus Christ was doubtless not the first innocent man Pilate condemned to death; soft porn came before child porn, snuff films, and rape videos; in the childhood of the serial killer lies cruelty to animals. Small evils harden the heart, making greater evil easier, more routine, less chilling. We marvel at the hideousness of the final act, but the descent to depravity is a gentle slope downwards.

 ♦ The false optimism of expediency: Solve the problem today, deny any future consequences. We are nearsighted creatures in the extreme, seeing only the benefits of our current actions while dismissing the potential for unknown, disastrous ramifications. When Baby Knauer, an infant with blindness, mental retardation and physical deformities, became the first child euthanized in Germany, who could foresee the horrors of Auschwitz and Dachau? We are blind to the horrendous consequences of our wrong decisions, but see infinite visions of hope for their benefits. As a child I watched television shows touting peaceful nuclear energy as the solution to all the world’s problems, little imagining the fears of the Cuban missile crisis, Chernobyl and Three Mile Island, the minutes before midnight of the Cold War, and the current ogre of nuclear terrorism.

Reason of itself is morally neutral; it can kill children or discover cures for their suffering and disease. Reason tempered by humility, faith, and guidance by higher moral principles has enormous potential for good – and without such restraints, enormous potential for evil.

The desire to end human suffering is morally good. Despite popular misconception, the Judeo-Christian tradition does not view suffering as something good, but rather something evil which exists, but which may be transformed and redeemed by God and grace, to ultimately produce a greater good. This is a difficult sell to a materialistic, secular world, which does not accept the transformational power of God or the existence of spiritual consequences, or principles higher than human reason.

Yet the benefits of suffering, subtle though they may be, can be discerned in many instances even by the unskilled eye. What are the chances that Dutch doctors will find a cure for the late stage cancer or early childhood disease, when they now so quickly and “compassionately” dispense of their sufferers with a lethal injection? Who will teach us patience, compassion, unselfish love, endurance, tenderness, and tolerance, if not those who provide us with the opportunity through their suffering, or mental or physical disability? These are character traits not easily learned, though enormously beneficial to society as well as individuals. How will we learn them if we liquidate our teachers?

Higher moral principles position roadblocks to our behavior, warning us that grave danger lies beyond. When in our hubris and unenlightened reason we crash through them, we do so at great peril, for we do not know what evil lies beyond. The Netherlands will not be another Nazi Germany, as frightening as the parallels may be. It will be different, but it will be evil in some unpredictable way, impossible to foresee when rationalism took the first step across that boundary to kill a patient in mercy.

A Life Not Long

sunset

I’ve been working on several posts, which had been taking longer than expected — especially a post on euthanasia, which is beginning to look like another multi-part series. I hope to start getting some of these up in the near future.

In the meantime, a link from Glenn Reynolds hooked into something I’ve been ruminating on in recent days: the endless pursuit of longer life.

Here’s the question I’ve been pondering: is it an absolute good to be continually striving for a longer life span? Such a question may seem a bit odd coming from a physician, whose mission it is to restore and maintain health and prolong life. But the article which Glenn linked to, describing the striking changes in health and longevity of our present age, seemingly presents this achievement as an absolute good, and thereby left me a tad uneasy–perhaps because I find myself increasingly ambivalent about this unceasing pursuit of longer life.

Of course, long life and good health have always been considered blessings, as indeed they are. But long life in particular seems to have become a goal unto itself–and from where I stand is most decidedly a mixed blessing.

Many of the most difficult health problems with which we battle, which drain our resources struggling to overcome, are largely a function of our longer life spans. Pick a problem: cancer, heart disease, dementia, crippling arthritis, stroke — all of these increase significantly with age, and can result in profound physical and mental disability. In many cases, we are living longer, but doing so restricted by physical or mental limitations which make such a longer life burdensome both to ourselves and to others. Is it a positive good to live to age 90, spending the last 10 or more years with dementia, not knowing who you are nor recognizing your own friends or family? Is it a positive good to be kept alive by aggressive medical therapy for heart failure or emphysema, yet barely able to function physically? Is it worthwhile undergoing highly toxic chemotherapy or disfiguring surgery to cure cancer, thereby sparing a life then severely impaired by the treatment which saved that life?

These questions, in some way, cut to the very heart of what it means to be human. Is our humanity enriched simply by living longer? Does longer life automatically imply more happiness–or are we simply adding years of pain, disability, unhappiness, burden? The breathlessness with which authors often speak of greater longevity, or the cure or solution to these intractable health problems, seems to imply a naive optimism, both from the standpoint of likely outcomes, and from the assumption that a vastly longer life will be a vastly better life. Ignored in such rosy projections are key elements of the human condition–those of moral fiber and spiritual health, those of character and spirit. For we who live longer in such an idyllic world may not live better: we may indeed live far worse. Should we somehow master these illnesses which cripple us in our old age, and thereby live beyond our years, will we then encounter new, even more frightening illnesses and disabilities? And what of the spirit? Will a man who lives longer thereby have a longer opportunity to do good, or rather to do evil? Will longevity increase our wisdom, or augment our depravity? Will we, like Dorian Gray, awake to find our ageless beauty but a shell for our monstrous souls?

Such ruminations bring to mind a friend, a good man who died young. Matt was a physician, a tall, lanky man with sharp bony features and deep, intense eyes. He was possessed of a brilliant mind, a superb physician, but left his mark on life not solely through medicine nor merely by intellect. A convert to Christianity as a young adult, Matt embraced his new faith with a passion and province rarely seen. His medical practice became a mission field. His flame burned so brightly it was uncomfortable to draw near: he was as likely to diagnose your festering spiritual condition as your daunting medical illness–and had no compunction about drilling to the core of what he perceived to be the root of the problem. Such men make you uneasy, for they sweep away the veneer of polite correction and diplomatic encouragement which we physicians are trained to deliver. Like some gifted surgeon of the soul, he cast sharp shadows rather than soft blurs, brandishing his brilliant insight on your now-naked condition. The polished conventions of medicine were never his strength–a characteristic which endeared him not at all to many in his profession. But his patients–those who could endure his honesty and strength of character–were passionate in their devotion to him, personally and professionally. For he was a man of extraordinary compassion and generosity, seeing countless patients at no charge, giving generously of his time and finances far beyond the modest means earned from his always-struggling practice.

The call I received from another friend, a general surgeon, requesting an assist at his surgery, was an unsettling one: Matt had developed a growth in his left adrenal gland. His surgery went deftly, with much confidence that the lesion had been fully excised. The pathology proved otherwise: Matt had an extremely rare, highly aggressive form of adrenal cancer. Fewer than 100 cases had been reported worldwide, and there was no known successful treatment. Nevertheless, as much for his wife and two boys as for himself, he underwent highly toxic chemotherapy, which sapped his strength and left him enfeebled. In spite of this, the tumor grew rapidly, causing extreme pain and rapid deterioration, bulging like some loathsome demon seeking to burst forth from his frail body. I saw him regularly, although in retrospect not nearly often enough, and never heard him complain; his waning energies were spent with his family, and he never lost the intense flame of faith. Indeed, as his weakened body increasingly became no more than life support for his cancer, wasting him physically and leaving him pale and sallow, there grew in him a spirit so remarkable that one was drawn to him despite the natural repulsion of watching death’s demonic march.

Matt died at age 38, alert and joyful to the end. His funeral was a most remarkable event: at an age in life where most would be happy to have sufficient friends to bear one’s casket, his funeral service at a large church was filled to overflowing–thousands of friends, patients, and professional peers paying their respects in a ceremony far more celebration than mourning. There was an open time for testimony–and such a time it was, as one after another took to the lectern to speak through tears of how Matt had touched their lives; of services rendered, small and large, unknown before that day; of funny anecdotes and sad remembrances which left not one soul of that large crowd untouched or unmoved.

A journey such as his casts critical light on our mindless pursuit of life lived only to live long. In Matt’s short life he brought more good into the world, touched more people, changed more lives, than I could ever hope to do were I to live a century more. It boils down to purpose: mere years are no substitute for a life lived with passion, striving for some goal greater than self, with transcendent purpose multiplying and compounding each waking moment. This is a life well-lived, whether long or short, whether weakened or well.

Like all, I trust, I hope to live life long, and seek a journey lived in good health and sound mind. But even more–far more indeed–do I desire that those days yet remaining–be they long or short–be rich in purpose, wise in time spent, and graced by love.

PSA Screening

roseA recent article in the Archives of Internal Medicine about using the PSA (prostate specific antigen) for screening for prostate cancer has garnered the attention of some of the medical blogosphere, including Kevin, MD and MedPundit. The full article requires subscription, so I have not been able to read the whole thing, but the gist is that PSA screening, with or without DRE (digital rectal exam) of the prostate does not improve survival times–i.e., men whose cancer is detected using PSA screening don’t live any longer than those cancer is diagnosed by other means.

Color me skeptical about this study — although it’s not entirely a surprising conclusion, either.

PSA is a protein released by prostate tissue which is measurable in the bloodstream. It is not a cancer test–it is a prostate test. This is one area of confusion about this test in many people’s minds. Normal prostate tissue secretes PSA, in amounts roughly proportional to the size of the gland. As the prostate enlarges with age, PSA levels tend to rise, typically rather slowly, due to the growth of a benign tissue called adenoma. This is the stuff which tends to give guys less pressure with urination as they age, as the adenoma may cause a degree of obstruction to the urinary channel. PSA is a rather noisy test as a cancer screen, however: it can be elevated for a host of reasons. Infection or inflammation in the prostate can cause a striking increase in blood levels; instrumentation (such as bladder catheters or endoscopy) can give it a good bump; and of course cancer, which tends to produce more PSA than benign tissue relative to its volume.

Cancer screening is one of those things which sounds great on paper but which suffers from the ravages of statistical math. Let’s say, using simple numbers, that you have a disease, say cancer, which occurs at an incidence of 10 people out of 10,000 (just pulling numbers out of the air). Left untreated, all 10 of these people will eventually die from this disease. If diagnosed early enough, all 10 can be treated successfully, and will not die — at least from this cancer (a very optimistic assumption, but let’s use it for the sake of discussion). So it is obviously desirable to find a way to detect this cancer early enough so that it can be treated before it is too late.

Now let’s say you have a diagnostic test which can detect 9 out of these 10 cancers, if everyone at risk for the disease gets tested. In other words, 90% of the people with cancer will have an abnormal test. That’s called sensitivity: how many people who actually have the disease will have an abnormal test — and 90% (9 of 10) is pretty darn good for most screening tests. So far, so good, right? Well, that’s just the beginning. Let’s say the same test is abnormal in 1 out of 10 people without cancer. This is called specificity: 90% of the people without cancer have a normal test, and 10% have what’s called a false positive. This is also pretty darn good as screening tests go: there’s no perfect test, all have both false positives and false negatives.

Now let’s apply these numbers and see what happens. All 10,000 people get tested; 10 of these statistically have cancer. The test finds 9 of the cancers–this is good (except for the one who gets missed — but that’s why God created trial lawyers). The test is abnormal–therefore indicating cancer — in 1000 people (10% of 10,000) who are in actuality cancer-free.

Whoops.

These 1000 people will need more tests, x-rays, biopsies, etc., to prove that they don’t have cancer — and these subsequent tests also have false negative rates. So of these 1000 people, a few may still have cancer (as far as you can tell), and a whole lot more are worriedthey have cancer, even though the subsequent tests don’t show it, and they don’t actually have it. And, wait–there’s more! The additional tests for the 1000 who do not have cancer, but who have an abnormal screening test, also have problems: they are costly, often uncomfortable, have risks of their own, and even they may not diagnose every cancer. So you end up spending a lot of money, adding additional risk and discomfort, with a whole lot of people to find that relative few who have cancer early enough to treat. Suddenly screening tests for cancer aren’t looking quite so rosy anymore.

Now let’s look at the economics. Let’s say the screening test costs $20, and the subsequent diagnostic studies needed when the test is positive cost $1000 (fairly conservative numbers, by the way). So our screening test cost $200,000 ($20 times 10,000 tests). The subsequent diagnostics for those found with cancer cost $9000 (9 times $1000). The diagnostic expenses for those with an abnormal test but no cancer is $1,000,000 ($1000 times 1000). So we’ve spent $1,209,000 to diagnose 9 early cases of potentially curable cancer: over $134,000 per cancer found — before it is ever treated.

Whoops.

Now, society or public policy may judge that such an expenditure is justified to save these 9 lives. But we have made other assumptions here which are not always true: that if we detect the cancer early, all those so discovered will be cured; that even if they are cured, that they will live longer (since the list of other things which can kill you is rather long); and that failure to treat the cancer will shorten their lives. These seem reasonable assumptions — but they are more often wrong than not.

Take prostate cancer, which the PSA test is designed to detect. It typically occurs in men over 50 years of age, increasing in incidence with increasing age. It is often very slow-growing–so slow that many men who are diagnosed with prostate cancer end up dying of other diseases–heart attacks, strokes, other cancers, etc. Yet it remains a significant health risk: over 30,000 men die of prostate cancer annually in the U.S–and it tends to be a slow, rather painful way to die for many.

With prostate cancer, nearly every assumption we made in our neat little example above is uncertain. First, there is the problem of selecting the population to screen. Not every population has equal or predictable risk. Men under 50 can get prostate cancer — and often have a very aggressive, rapidly growing variety–but the disease is much less common than in 70-year-olds. Men over 70, conversely, have a much higher incidence, but are far more likely to be managed without aggressive treatment, as other diseases are much more likely to pose a mortality risk. African-Americans are at higher risk than Caucasians–but get screened less. Men with a strong immediate family history of prostate cancer are also at higher risk–but tend to have fast-growing aggressive tumors at diagnosis, and even early detection may not result in cure.

Then there’ s the problem of the sensitivity and specificity of the PSA test itself. Normal values for PSA increase with age, because the prostate generally gets larger with age. But size of the prostate at any age varies widely with each individual, is not necessarily age-dependent — and therefore what is normal for your age group may not be normal for you. There are several different assays (laboratory techniques) which can give differing values on the same patient, making comparison of sequential values tricky. Random variations in single values are also common, often for inexplicable reasons–and can lead to unnecessary evaluation and biopsy in some cases. And lastly, you can have prostate cancer with a normal PSA. A recent large screening study — where biopsies were done on men with normal digital exams and PSA values — found prostate cancer in a surprisingly large percentage of men in whom the PSA and physical exam were entirely normal.

When a patient with an elevated PSA needs further evaluation, this generally involves evaluating the prostate with ultrasound, and often involves a biopsy of the prostate. But ultrasound is only fair at identifying abnormal or suspicious areas in the prostate, and biopsy has a false negative rate (i.e., the patient has cancer but the biopsy comes back benign) estimated at 3-5%.

Now let’s assume we’ve found prostate cancer after a biopsy done for an elevated screening PSA. Our neat little example above implies that treatment of the cancer is performed, leading to cure and a longer life. But it’s not nearly so cut and dry in the real world. Many prostate cancer patients–especially younger ones with more aggressive forms of the disease — may be relatively advanced even when discovered by screening PSA, and treatment may not cure them or prolong their life. Conversely, some men with earlier, less aggressive cancer, may well have never had a problem with the cancer if it had not been diagnosed at all. Others with clinically aggressive disease, which might otherwise kill them in time, die from unrelated causes before the cancer gets to this stage. And although there are some indicators of aggressiveness and prognosis which have some predictive value (extent of disease at diagnosis, initial PSA value, pathologic appearance or Gleason score), crystal balls are in short supply, both for predicting future behavior of prostate cancer, and for the likelihood of demise from unrelated causes.

Is it any wonder that studies of the value of screening with PSA are going to have a tough time sorting this mess out?

Oh, and by the way: this is the discussion you’re supposed to have with every patient who requests a screening PSA, according to the AMA and the NCI. And you wonder why most physicians laugh at such recommendations? Even when you have such a discussion, patients will always opt for the screening PSA. Always. And if they decline to have it done, and later find out they have prostate cancer–you’ll get sued for failure to diagnose it. So much for the big-shot’s recommendations.

So what to do about PSA screening? And why do I suspect this recent study disproving its value is likely wrong?

The answer lies in the big picture, and in experience.

I’ve been around this business for quite a while (surprising but true), and took care of a lot of men with prostate cancer before PSA was available, or widely used. Back in the 70’s, about 70% of men who were diagnosed with prostate cancer were at an advanced–and incurable–stage of the disease. The only tool we had for screening was the digital exam, which can only detect cancer when it is large enough to be felt–in other words, more advanced. In the 1980’s, when PSA began to see widespread use, about 43,000 men a year died of prostate cancer.

Today, the large majority of men diagnosed with prostate cancer are detected at a much earlier stage. In 2005, about 30,000 men died of prostate cancer–a reduction of over one-third in 20 years. What has changed? Not the therapy, really. Both surgery and radiation techniques have improved–but most of these improvements lie in reduction of treatment complications, rather than better cure rates. Chemotherapy has never been effective as a curative treatment, and is not so today–although it is improving at prolonging survival from widespread cancer. Men are better educated about prostate cancer and the importance of getting regular checkups for it–although most men are happy to skip their annual rectal exams when given half a chance.

What has changed is the widespread use of PSA for early detection.

The bottom line is, there are only three ways to suspect you may have prostate cancer: an abnormal prostate exam, an elevated PSA, or the findings of widespread cancer on other diagnostic tests. The last means the cat’s out of the bag; the first is relatively insensitive until the local tumor is large. But the PSA–often misleading by being abnormal when no cancer is present–is nevertheless how the large majority of men come to find out they have the disease. And this is conclusion is not merely anecdotal medicine–there is good evidence that regular screening reduces the risk of death by prostate cancer.

So what’s a fella to do, given all this conflicting information?

Here’s some recommendations I would make:

  • If you’re under 40, you don’t need a PSA.
  • If you’re over 75, and don’t already have prostate cancer, you don’t need a PSA
  • If you’re under 75, but have other high-risk medical problems (e.g., severe heart disease), you don’t need it.
  • If you have a strong immediate family (father, brother) history of prostate cancer (not just cancer in general), especially if they were diagnosed at less than 60 years of age, get a baseline PSA at 40, another at 45, and annual PSA and DRE after that.
  • If no family history, begin with DRE and PSA annually at age 50.
  • A PSA when you have a prostate infection or urinary tract infection will often be high. Ask your doctor to wait at least 3 months after treatment before checking one.
  • If your PSA comes back high, when previous ones were normal, be sure to have it rechecked before further evaluation. If a repeat comes back normal, have a third one checked 3-6 months later. The trend in PSA values is much more important than any single value.
  • If your doctor feels a lump on your prostate, but your PSA is normal, don’t be too reassured: get in to see a urologist.

Ignore the swirling controversies about PSA played out in paper-thin detail by the media–they have absolutely no clue what they’re talking about. Be a good boy, and get your prostate checked and a PSA. And tell them Dr. Bob sent you.

That Terrible Power

EagleThese have been difficult weeks.

The practice of medicine is one of the most gratifying careers possible, but it is relentless in its demands and unforgiving of imperfections — both those of the patient and the physician. Surgery in particular — while enormously satisfying in its technical and definitive nature for those physicians so inclined and gifted — is at the same time the most humbling of all disciplines. Despite all the training and experience, the knowledge and technical skill acquired through countless repetitions and refinement, things do not always go as planned.

John (not his real name, of course) was like so many others — in good health, early sixties, found to have a rising PSA blood test, which proved to be the harbinger of prostate cancer, fortunately still at an early stage. Presented with the options for treatment, he chose surgery: radical prostatectomy, the total removal of the prostate gland and biopsy of the pelvic lymph nodes — those filters which are the first resting place for cancer cells migrating outside the organ. It was an operation I had performed hundreds of times over nearly thirty years, and promised an excellent chance for cure, with an acceptably low risk of long-term adverse effects.

Surgery began uneventfully, with good exposure of the pelvic organs and lymph nodes, despite his portly habitus which can make such access challenging. The right pelvic lymph nodes were addressed first. Located in a triangular area demarcated by the external iliac vessels — the main artery and vein to the leg — the obdurator nerve (a large nerve deep in the pelvis) and the wall of the pelvic bone below, the lymph glands therein are gently teased and separated from these structures and sent for biopsy.

Surgeons get to know anatomy intimately, and depend on its predictability for safely performing their craft. In this area, the external iliac artery is reliably and predictably located lateral to the vein — farthest to the outside. At times, it can run a somewhat serpentine course, as cholesterol plaques narrow the channel and changes in flow and pressure lengthen and twist the artery. Such variations are also predictable: the artery courses in front of the vein if it moves toward the midline, or else moves away from it, farther toward the outside.

The bulk of the nodes were out in little time, titanium clips sealing the lymphatic channels and small blood vessels which feed them. The final packet was located near the point of the triangle, at the upper part of the pelvis below the vein. Several small vessels were clipped, and these nodes were removed easily as well.

I inspected the nodes, feeling them for firmness that might suggest cancer spread. One node looked peculiar. Hollow. Lymph nodes aren’t hollow.

Shit.

Inspection of the surgical field confirmed my worst fear: I had removed a short section of the external iliac artery, the main vessel to the leg. Located in a highly unusual location: underneath the vein, rather than above and lateral to it — an aberrant knuckle of vascular conduit enveloped in fat and lymph nodes — a section of artery had been cleanly removed with the nodes.

There was no bleeding, and the ends of the severed artery were easily identified and freed up. Fortunately, John did not have advanced vascular disease, and alternate paths for blood flow to the leg were open. A vascular surgeon was contacted, and arrived within 10 minutes. A short synthetic vascular graft was placed to bridge the gap, and full circulation was restored in less than an hour. There was no evidence of ischemia — a dangerous situation where insufficient blood flow and oxygen causes damage to tissue and the release of high levels of toxic lactic acid into the blood.

But the presence of a vascular graft, while salvaging a serious situation, meant something else: the main surgery, the prostate removal, would have to be canceled until the graft healed. To proceed as originally planned would risk contaminating the vascular repair, leading to graft infection — a disastrous complication. The incision was closed, and the patient arrived uneventfully in the recovery room. Two days later, he was home.

Imperfection in a field which demands perfection is perhaps the burden a surgeon experiences most deeply, with the most fear and respect. We hope, by endless years of study, preceptorship, practice, and experience, to master that which cannot be fully mastered, to control and manipulate our world to achieve that which is unachievable.

A surgeon who has never made a mistake is a surgeon who has never operated; the doctor who makes no errors must be one who sees no patients. The hard truth — hardest of any we healers, so often arrogant in our knowledge and skill, must swallow — is that we are not perfect — and neither are our patients.

Such untoward events may occur for many reasons, of course: a surgeon’s inexperience, recklessness, or fatigue, or his inattention to detail and proper technique. Aberrant anatomy, prior surgery, body habitus and underlying disease processes lay additional mines which trigger in unexpected ways and at unplanned times. But in many cases — perhaps even most — such ethical, physical or technical failings contribute little or nothing to a bad result or a poor outcome. Such a claim seems self-serving — and perhaps it is; hence I leave judgment of my own performance in this situation to those wiser and more objective than I — but it has been my experience that such is so with most good, talented surgeons with whom I have worked. The power to heal is the power to harm; the competence to cure the capacity to kill.

I have long marveled at an observation I rarely hear made: that a patient, a complete stranger, after one or two short visits, allows a surgeon to perform what is often a high-risk surgical procedure on their body, with something approaching blind trust. Granted, there is trust accrued in the degree, the board certification, the training, and hopefully the reputation of the surgeon you (or more likely, your family doctor) have chosen. But in reality, the information gap is real, and the leap of faith substantial. The “eyeball test” only goes so far: is the personable, knowledgeable professional you meet in the office a ham-handed clumsy oaf in the OR? Is the obnoxious, cold, arrogant technician a highly competent surgeon (a dichotomy often imagined as the norm), or instead a hot-headed impulsive boor whose ego trumps caution in surgery while denigrating all around him? Fortunately, neither scenario is typical — most surgeons are well-trained, professional, and highly competent — but how will you know?

But even among the highly competent, unexpected or adverse events in surgery are closer to the norm than the exception. Most are trivial and inconsequential — the small vessel cut and easily secured, the important suture which breaks and must be replaced, the surgical dissection which proves tedious and time-consuming rather than routine. Even more serious surgical problems may end up having no discernible impact on the outcome of the procedure, the recovery, or the end results. But serious complications are the bane and bale of every surgeon: our perfectionistic natures strain to demand that it not be so, but reality too often intervenes to correct our hubris and false hopes.

The dashed expectations and frustrated hopes of perfection fall hard on all whom surgery touches — the patient, the family, and the physician. For the patient, there is of course the harm done: the surgery aborted; the longer hospital stay; the pain of additional surgery or procedures made necessary; a temporary or even permanent disability; the disease not cured or ameliorated; even — God forbid — death itself. Both families and patients must bear these losses — and often suffer financial setbacks as well, both in medical costs, lost jobs, wages and benefits forfeited. And the question of, why has this happened? How could it occur? all too often go unanswered, or at best only partially so. Such confusion and frustrations often lead to anger — a potent cocktail whose dregs are often drained in the cold glare of courtroom lights.

For the physician, the demeanor perceived as indifferent or callous is rather the intellectualization and rational detachment which allows the surgeon to perform the vivisection which the untrained would find ghastly. But the cost of such steely objectivity comes in the relationships with those harmed, as empathy and compassion must be recruited from the dark closets to which they were banished long ago, orphans of the very training needed to excel in this field.

And beneath the professional veneer simmers also a cauldron of emotions. Smashing the idol of perfectionism comes hard — though a fragile idol it be — as false conviction that care and competence can avert all disasters is dispensed by the errant knife or misplaced scissors, by dense scarring or genetic quirk. The confidence which carries a surgeon effortlessly through daunting technical challenges melts away in moments, as simple tasks become feared challenges in the light of recent failure. The trust so critical to the patient-surgeon relationship is shaken and battered, and may not survive the event. And the fear: of unforeseen secondary complications arising in the future; of judgement and criticism by peers; of angry families and damaged reputation; of legal implications in an environment where lawsuits are the answer to every problem.

For some the worst wounds are self-inflicted, as shame, self-criticism and depression set in. Like the trapped wolf gnawing at his own leg, we wound ourselves further in vain hopes of escaping the pain and seeking freedom from its ensnarement — only to end up weakened, more vulnerable, and less able to stand. And we strike out at those closest to us, those who wish to help, deepening our isolation. The results can be deadly: scratch the surface of physician suicide — a problem more common than generally recognized — and you will often find the self-destruction engendered when perfectionism collides with poor outcomes.

To greater or lesser degree, many of these reactions were mine in the aftermath of this complication. And there was one other: I was angry — angry with God.

You see, I pray before surgery — and I prayed before this one, for guidance, wisdom, and good judgment, as I often do. If you are of a skeptical bent, and disinclined to give weight to such superstition, at least humor me by accepting that such an act might focus the mind and center the soul. But only a fool would deny that there is much beyond our control — and few things teach this lesson more clearly than surgery. It was not always thus: I have lived a life where skills and talent were all that was needed to succeed — a formula which led me inexorably on a downward spiral of failure. So I pray.

But to pray is to expect answers — and with that lies the unspoken assumption that all will turn out as I would wish. And so, it is God’s fault — is it not? — if the outcome is not what I would desire. Did I not have my patient’s best interest at heart in this request? Would not a good God answer this prayer to the benefit of both me and those He entrusted to my care? And so it appears, ipso facto, that God screwed up — and I get to take the heat. Bum rap, it seems to me.

But maybe — just maybe — there is a bigger picture in all this. Maybe I get to learn how little really is under my control. Maybe I learn to depend more on Him than on myself. Maybe — and this is a tough one — my shortcomings, my imperfections, which can cause harm as easily as my skills beget good — can work beneficially in some unfathomable way, even for those who must bear the suffering of these very imperfections. Some of the worst, most painful episodes in my own life have proven in the long run to be blessings unimaginable at the time — perhaps it can also be thus for others, even when I am the instrument of such adversity. A frightening thought, this — a terrible power.

And what of John? His recovery has been smooth, his lymph nodes show no cancer. I have apologized to him and his wife for this adversity, though no harm was intended nor evident neglect present to my knowledge. I have offered to assist with any financial burden thus accrued. And they have decided to trust me to perform the second surgery — which is humbling and sobering in ways difficult to express.

May God be with me then — and always.

EMR Blues

I’ve been following in pained silence the saga of Medpundit and her transition to an EMR (electronic medical record). If it’s any comfort to her, I feel her pain.

The computerization of medical records has been the Holy Grail of medicine for many years now, the answer to all manner of problems in health care delivery. Yet while we scan our groceries, submit taxes online, get money from a teller machine thousands of miles from the bank where our account resides, print detailed driving instructions to an obscure address in a strange town, and enjoy many other marvels of computerization and networks, the sad and sorry fact is that most physicians today document your health care in much the same way their grandfathers did: scribbling with pen on paper, filing the paper in a manila folder, and placing the chart (eventually) in a massive rack of other records organized using an obscure color chart based on the first letter of your first name. In a profession so utterly transformed by technology — CT scanners, minimally invasive surgery, gene therapy, etc. — it is nothing short of amazing that such an anachronism remains the norm. Yet only about 10% of physicians use an EMR in their practices. So, wassup?

The answer — like most things in medicine — is far more complicated than it looks.

The appeal of an EMR is obvious, and akin to the benefits derived from computerization in general: instant access to information, organized and readily available. Piles of paper and disorganized files disappear, replaced by the warm glow of a computer monitor. Smiling, relaxed staff no longer run around like rats in some twisted neurophysiology study, demanding to know for the very last time where you’ve hidden Mrs. Jones’ chart. Lab results at your fingertips, sorted by date and test, annotated with appropriate alerts to notify Mr Smith about his elevated blood sugar. The doctor spends more time with you, sees you on time, goes home at 5 pm, and plays with his children until bedtime, arriving back at the office rested with his morning coffee just before the first appointment.

At least, that’s what they tell you. The reality is vastly different.

This is a subject with which I have a more than a passing familiarity, having designed and developed an EMR software application for my practice over the past 12 years. Using an obscure but wonderful database application platform called 4th Dimension, I began in the early 1990’s to seek a solution for the repetitive mindlessness of dictating or hand-writing charts. Needless to say, a small project to create a database of chart notes and templates got wildly out of hand, and has now grown to well over 100,000 lines of code. Don’t try this at home, folks — at least if you want a life. I became so engrossed in this project that I even considered abandoning medicine and doing it full-time — a delusion which by God’s grace has since passed. But the logical-sequential perfectionistic obsessive-compulsive in me found a natural home in software development.

Now, apart from the huge black hole of time and effort in its development, my EMR is about as good as it gets. The software is designed specifically for the way I practice, right down to the dictation, data entry, templates and formatting style. I know exactly how it works; no training or familiarization necessary (my staff begs to differ, of course). I can — at least in theory — make it perform any task, exactly the way I want. And don’t get me wrong: it’s my baby, and I love it, and couldn’t get by without it. But it largely disproves many of the purported benefits of an EMR. So where’s the problem? What happened to Nirvana? Hmm, where to begin — here’s a few thorns in the flesh for starters:

 • Data Entry — That cryptic scribble that doctors are known for — sometimes called handwriting — is actually a very efficient shorthand; it is one of the few things doctors learn in medical school that is useful later in life. Sure, it’s impossible for others to read, terse, loaded with obscure acronyms, but it’s fast. And those little sketches in the chart communicate a world of information. Now move to the computer: you have to sit at a keyboard, type full words, and have no easy way to reproduce your descriptive drawing. Sure, there’s lot’s of software tricks to speed things up, such as popup menus, glossaries (short phrases which expand to full text), checkboxes, etc. But it’s still tedious, and takes much more time for the same information. Granted, the information is readable and can be easily organized. But it adds a lot of time to a too-short day.

 • Depersonalization — I can make quick shorthand notes while still maintaining a conversation — and eye contact — with my patient (and yes, I know a lot of doctors stare at the chart, with no patient eye contact: BAD doctor! Shame!). Now bring a laptop, or even a new tablet computer in the room, and the dynamic changes: the focus is on the machine, the technology, the keyboard. The patient begins to feel like a spectator, akin to talking to someone who’s using a speaker phone: you know their focus is on something other than you. One more barrier has been thrown up in the relationship between doctor and patient.

 • What about the paper? — We’ve been hearing for years about the paperless office. Ever seen one? Neither have I. Even in a small solo practice, with an entirely electronic medical record, the amount of paper arriving daily is nothing short of staggering. Lab reports. Insurance forms. Hospital dictations. Work releases. Physician letters. Record requests. Notes and med lists from patients. It’s endless, and it’s brutal. It all has to be reviewed by somone (often the physician), and filed. Most of these items have to be associated with a specific patient’s chart, and this means one thing: scanning. The paper must be converted to a digital image — and that’s just the beginning. It has to be linked or imported to the patient’s record in the database, and then categorized and named. You see, an image is just that: a bunch of random dots which only have meaning when interpreted by the human eye and brain. Want to get the results of Mrs. Jones’ lab test you’ve scanned in last week? Computers are great at searching for text strings, but have no clue that this binary collection of black and white pixels contains your blood count results. A human has to enter linked information associated with the binary file in order to retrieve it. Yes, there are OCR (optical character recognition) programs to convert images to text, but they have an unacceptable error rate even on high-quality typed originals, and are useless for low-quality copies or faxes, or complex reports like lab. So the quick-and-dirty routine of read, pull chart, sign off, and stuff in the folder, becomes: read, scan, import, query database, link, name, categorize, save, sign off. Doesn’t sound too bad until you’re dealing with hundreds of pages a day, but there’s more steps, and each one is more time-consuming. Only after this process does the benefit of rapid information access accrue.

 • What about the old charts? — Oh yeah, those: thousands of ’em, with thick piles of paper in each. Loads of junk, like duplicate copies, insurance forms from 5 years ago, post-it notes, and lab results pasted like shingles on single pieces of colored paper, 5 or 10 to a page, different tests, different dates. And the staples — all have to be removed before scanning, lest the scanner jam and devour your only copy of a pathology report faster than a Rose Law Firm shredder. These charts are an absolute nightmare to convert to digital form for any size practice moving from paper to EMR. But if you don’t tackle this, you end up with a orcish mutant, with some information on paper and some on computer — the worst of both worlds. You can contract this job out, but it’s prohibitively expensive, quality is spotty, and the results are either unorganized or mis-organized. It has to be done in-house, in my opinion. And it’s not a job for your father’s scanner, the one you use to e-mail that 3×5 print of Junior to Grandma. High-speed document scanners are a must, and they are very expensive.

 • Legacy software — Almost all physicians have existing software in their office to handle insurance billing. It’s usually butt-ugly but functional, understood only by those coding specialists plying their arcane craft, squeezing blood out of Prudential’s rock. And the information therein — demographics, insurance data, coding information, phone numbers — is needed by your spiffy new EMR software. Simple data transfer? Fugeddaboutit. No electronic data export option available – or your billing software company will write a custom job for you (something which should take, oh, an hour of a competent programmer’s time) for a mere $10-20,000. Right. It’s called Square One: you have to manually enter all your names, insurance info, and — God forbid — accounting and ageing information into your new software. Cancel all staff vacations, call for Chinese carry out, limit bathroom breaks, and be prepared to spend many nights and weekends in the office.

 • Design issues — Did I mention that EMR software is very hard to design well, and very rarely well-designed? Medicine and health care problems don’t fit well into standard, cookie-cutter design models, unlike, say, accounting, banking or payroll. Lots of people and countless man-hours have been spent on medical informatics — the technology of mapping health care to computers — and there are miles to go before we sleep. Different areas of medicine are widely divergent problem domains: a pediatrician, a heart surgeon, a radiologist, an anesthesiologist, and a pathologist all have vastly different requirements for managing, organizing, and retrieving health information, and shoehorning them into a single off-the-shelf software package just doesn’t work.

And there’s another problem: the people who are skilled at designing software don’t understand the problem domain of medicine, and the users (doctors and office staff) on the medical side don’t understand or communicate their work flow well to the software designers. The result is software with lots of bells and whistles that programmers love, but which is hard to learn and use, and forces users to work inefficiently. This is a widespread problem in the software development world, and one reason why a staggering percentage of large custom software projects – greater than 80% – never reach completion.

 • Cost — In the final analysis, it is in large part about cost. The financial hurdles are legion: hefty hardware to run the applications; firewalls and tight security for protected health care information; fast networks to handle images and other large files; redundant and offsite backup; staff training and support; expensive software packages (often over $100,000); the enormous number of man-hours to input and archive legacy data. Are there huge benefits to be had once the transition to EMR has been made? Absolutely, but the time line is very long and the cost-benefit ratio simply does not make much sense for many physician practices. Margins are tight in health care, and growing tighter. Investing huge resources in information technology is not a high priority when many practices are struggling to meet payroll.

So, will we ever get there? Yes, eventually — I anticipate 10 or more years before this is nearly universally implemented. And don’t be surprised if the touted benefits for cost reduction and efficiency never materialize as predicted, although the clinical benefits will be substantial. Blending the art and science of medicine in this area is a formidable task. Like emulsifying lemon and egg yolk in a fine Bearnaise, this transition will take lots of patience and see slow progress, with lots of scrambled eggs in the interim, but the results will be well worth the wait.

The AMA Conspiracy

Milton Friedman, in his influential work Free to Choose, puts forth the premise that restrictions on medical licensure and the numbers of physicians in training by the AMA is one of the principal reasons for spiraling health care costs and diminishing quality. In a truly free health care market, the consumer would be free to choose from a large number of health care providers – physicians, non-physician health care providers such as nurse practitioners, midwives, chiropractors, and alternative medicine providers. Competition would drive down prices, and those providers with the highest quality and best service would succeed.

While I respect Milton Friedman, and believe in the power the free market, the law of supply and demand only works in a truly unrestricted free market.

American medicine is far more regulated than Soviet state industry ever was. The idea that physicians fees and resulting healthcare costs will magically drop if somehow the AMA loosens up the supply of physicians (which I am not all convinced is done for purely economic reasons, although no fan of the AMA in general — and not a member) is a fantasy. The vast majority of physicians fees are fixed either by federal regulation or contractual agreement with insurance companies. At the same time, physicians are businesses like any other, with rapidly escalating overhead costs which are beginning to bump against their virtually fixed – or falling – receipts. The reasons for this have been well described, and include spiraling malpractice premiums, unfunded federal mandates such as federal compliance and HIPAA, increasing health insurance costs for employee benefits, as well as a relatively scarce pool of highly qualified employees such as nursing and billing specialists. Opening the floodgates of physician supply will not drop prices, since prices are not determined by the usual supply and demand principles, but rather by federal law and an increasingly monolithic health insurance industry.

In my state, Washington, there were over 80 insurance carriers providing health insurance in the late 1980s. There now are three or four. Single insurers now cover huge swaths of the patient market, and therefore physicians have no flexibility to negotiate contracts. Imagine walking away from a bad insurance carrier contract, when 40-50% of your patients are covered under that plan (and will switch doctors if you’re no longer on their plan), and you begin to get the idea. Keep in mind that doctors are currently prohibited from collectively bargaining with insurance carriers under antitrust laws, and you can see how unbalanced the marketplace truly is.

Increasing the supply of physicians would in fact likely result in a rise in healthcare costs, as desperate physicians increase volume in an attempt to compensate for worsening financial viability.

Another myth related to the economic arguments for licensure liberalization is that of alleviating the problem of physician shortages in underserved markets, such as rural America. No offense to folks who live in small towns, but I doubt that physicians will flock to tiny rural villages simply because the AMA lets more doctors be trained. Cities have large populations precisely because they offer greater benefits to those who live there — financial, cultural, convenience, lifestyle. While the urban lifestyle is not for everyone, economics and personal lifestyle preference dictate physician distribution far more than absolute numbers.

Licensure restrictions — while certainly having the potential for conflict of interest and market domination – do in fact serve to standardize quality and predictability of physician care, albeit imperfectly. Anyone who has struggled to figure out who a good physician might be for their particular medical problem can imaging the situation when all bets are off — is the physician you selected adequately trained to bypass your coronary arteries, or remove your brain tumor, or simply a charming, good-looking con man? A low-cost brain surgeon somehow doesn’t sound like such a great bargain. Airline fares would drop, too, if you loosened the license requirements for pilots and flooded the market. No more overpaid pilots. All aboard, anyone?

Further undermining this argument is the fact that a vibrant market in alternative health care already exists. Billions of dollars are spent on remedies, herbs, manipulations, and treatments which are rarely beneficial, often worthless at best or harmful at worst, promoted using misleading advertising or by playing on false hopes or patient desperation (how many weight-loss products are there? How many work?) This is the free market at work, at its best – unregulated, unlicensed, unrestricted, unaccountable. Let the buyer beware.

There is no free lunch. Quality health care is expensive, and requires reasonable regulation — and therefore restriction – of providers to minimize the risks associated with highly complex advanced health care. Conspiracies about the AMA are superficially attractive, but it’s time to look elsewhere for answers to our growing health care crisis.