Saturday, February 26, 2005

Dancing with Death

SunsetThe war rages on. It is a battle with ancient roots, deeply embedded in religion, culture, and the tensions between rich and poor. It is a war of contrasts: high technology and primitive cultural weapons; knowledge versus ignorance; speed and urgency against the methodical slowness of an enemy who knows time is on his side.

It is a war in which enormous strides have been made, with countless victories large and small.

The enemy is death. The avenger is medicine. And the war is going very poorly indeed.

In many ways, the gains of modern medicine against death and disease are truly impressive: longer life expectancies; progress and cures against heart disease, cancer, and diabetes; surgical and procedural marvels hard to imagine even 15 or 20 years ago. Yet, it is these very advances which seem to lie at the heart of a growing problem. We are so engaged in the battle, so empowered by our growing capabilities, that we have lost sight of the bigger picture. While pushing back the adversary of death, we are ever so steadily being destroyed by the very battle itself.

Several recent experiences have driven this dichotomy home for me. Last week, I was asked to evaluate a man who had been hospitalized for a over a week. A nursing home resident in his late 80's, his overall health was fair to poor at best, and he suffered from severe dementia. He was unable to communicate in any way, and could recognize no one -- not even his wife of many years, who remained in possession of her full facilities. He was admitted to the hospital with a severe urinary tract infection with a highly resistant bacteria, and septic shock. When he arrived at the ER, the full extent of his dementia was not apparent to the physicians there, and his wife insisted that all measures be engaged to save him. Aggressive medical care was therefore initiated -- intensive care unit, one-on-one nursing care, hemodynamic monitoring, drugs to support blood pressure, intravenous nutrition, and costly antibiotics. After nearly two weeks of such intensive therapy, the patient largely recovered from his life-threatening infection -- returning to his baseline of profound dementia. Yet the underlying risk factors which led to it -- his age, a chronic bladder catheter and bacteria-harboring stones, diabetes, -- remained in place, lying in wait for another, inevitable opportunity, in a matter of weeks or months. The cost of his hospitalization was easily in 6 figures.

In another situation, an elderly women presented to the hospital with signs of a serious, life-threatening infection in her abdomen. A healthy widower, she lived independently with her sister prior to her illness. Emergency surgery was performed, and an abscessed kidney removed. Her medical condition deteriorated after surgery, with coma due to stroke and failure of her remaining kidney brought on by the infection.

The patient's sister and living companion communicated the clear final wishes of the widower: a women of strong faith, she wished no extraordinary measures, such as ventilators or dialysis, to extend her life needlessly. She was comfortable with death, and not afraid. The staff prepared to allow her to die gracefully, comfortably, and in peace.

But such was not to be. There was no living will, and the sister did not have legal authority to make such decisions. But the widower's daughter, a nurse living out-of-state with little recent contact with her mother, arrived in town demanding that aggressive measures be taken to save her. A nephrologist (kidney specialist) was called in. A superb physician, compassionate and dedicated, he had been successfully sued in a similar case after recommending that dialysis be withheld in a patient with a grim prognosis. This was a mistake he would not make twice: the widower was transferred to another hospital, placed on dialysis, and died 3 weeks -- and a quarter of a million dollars -- later, in an ICU. She never woke up.

The issues which these two cases bring up are numerous, complex, and defy easy answers. They touch upon the subjective measure of quality-of-life and what it is worth; the finite limit of economic health care resources; the relative responsibilities of physicians, patients, and their families in end-of-life decisions; the pressures placed on the health care system and its practitioners by after-the-fact second-guessing in an aggressive tort environment; and a host of others greater or lesser in weight and substance, up to and including the meaning of life itself.

All the players bear responsibility in this passion play. Physicians excel at grasping what they can accomplish, but are woefully inadequate for the task of deciding whether such things should be done. In the urgency of acute care, delay to consider the ramifications of a decision to treat may cost an opportunity to save a patient for whom such treatment is desirable; better always to err on the side of salvage. Pressured by family, potential litigation, or instinct, the path of least resistance is to follow your training and use your skills. And physicians themselves are uncomfortable with death, though inundated in its ubiquity.

Family members naturally resist the agonal separation of their loved ones, often harboring unrealistic hopes and expectations of recovery in the face of inevitable death. A curious dance of denial often ensues between physician and family, as each, unwilling to face the unpleasantness of the inevitable, avoids the topic at all costs. The physician hides behind intellect, speaking of blood counts, medications, and ventilators, or at best tiptoeing around the core issue with sterile terms like "prognosis." Family members hesitate to ask questions whose answers they already know. Too rarely are the physician and family willing to place the subject squarely on the table, in all its ugliness and fearfulness. Decisions which need to be made are put off, unspoken and deferred. The clock ticks on, the meter is running, and only the outcome is not in doubt.

The tort system provides a ready outlet for the anguish and anger of death of a loved one. In such a period of intense emotional turmoil, the real or perceived indifference of physicians (often a mechanism of detachment by which doctors deal with the horrors of death and illness); the parade of unfamiliar medical faces as no-name consultants come and go during the final days; the compounding burden of crushing financial load from the extraordinary costs of intensive terminal medicine; the Monday-morning quarterbacking by the tort system of complex, often agonizingly difficult medical decisions in critically-ill patients: all present a toxic and intoxicating brew which impels the health care system forward to leave no avenue untravelled, no dollar unspent in prolonging life beyond its proper and respectful end.

This march of madness is not without resistors. Seizing on the high costs, the futility, and especially the lack of personal control fostered by impersonal, highly technical terminal care, the euthanasia movement is maneuvering into the gap. Cloaked in slogans of personal autonomy and "Death with Dignity", active euthanasia proponents seek to replace the sterile prolongation of a now-meaningless life with the warm embrace of Death herself. Terrified by an out-of-control dying process, an end of a life which embodies all meaning, they seek to control death as their final act of significance. But Death will not be controlled, and those who dance with Death are seduced by her siren. Euthanasia starts with compassionate intent, but ends with termination of the useless. Man does not have the wisdom to control death; The Ringbearer is corrupted by its power.

Our discomfort with death is our confusion about life. Man is the only species cognizant of his coming demise -- who then, in the ultimate paradox, lives his entire life pretending it will not happen. Our Western culture, enriched with a wealth of distractions, allows us to pass our living years without preparing for the inevitable. When the time arrives, we use all the weapons at our disposal -- wealth, technology, information, law -- to resist the dragon. We drive it back for a time -- at enormous cost, personal, financial, physical and emotional. Death always wins -- always.

I am not of course yearning for a return to the past, a passive resignation to the inevitable anabasis of disease and death. The benefits of medicine and the forestalling of death are precious and powerful gifts, which have greatly benefited many. But like all such great powers, they are useful for good or ill. When the defeat of death becomes an end in itself, detached from the meaningfulness of life lived, it has great destructive energy.

We must learn how to die. And to learn how to die, we must learn how to live -- how to seek the transcendent, the power of love, and sacrifice, and giving which makes life rich and enduring. The selfish, the superficial, the transient all gratify for a time, but when this is all we possess, we grasp desperately to their threadbare fabric when beauty and health give way to weakness, fear and death. All great religions understand this: the meaning of life transcends life. In the Judeo-Christian view, life is an opportunity to draw ourselves and others closer to the light and goodness of God, with the promise of an even greater life and deeper relationship after death. Yet even for the agnostic or secular among us, service to others -- personal and social -- has the potential to endure long after us. None of us will be remembered for our desperate clinging to life in its waning days, but rather for the lives we touched, the world we made better when we lived.

Thursday, February 17, 2005

Comments on Comments

SmileyI have turned off comments on the site for now. After my last post, I received a flurry of comments, the basic premise of which was that I was an arrogant physician who cared nothing for patient autonomy, was a greedy SOB, and that I -- and all doctors with me -- deserve to be sued out of our BMWs. And that was the warm, fuzzy icebreaker -- it went downhill from there.

Now, far worse things have been said about folks on the Internet. But what was evident in the comments was the presumption that physicians are arrogant and greedy, and deserve every lawsuit they get and more. Most of the negative comments were anonymous.

Comments on a blog are a decidedly mixed bag. They are public, and become part of the post. This can be a good thing: well-thought-out comments may challenge the poster's facts or suppositions, or may add significant information on the topic which enriches the overall post. This is true even of negative comments, posted respectfully. Conversely, the anonymity of the Web seems to bring out the worst in some people. The idea that you are going to win someone over to your point of view by starting a conversation with a stranger, impugning their character and integrity, and smearing their entire profession, frankly strikes me as a bit odd, and certainly stupid. There is a great deal to impugn in my character, and no shortage of character defects and shortcomings, -- but that is why I have friends and family. They have earned the right to point out my defects based on a mutually strong and trusting relationship, and I accept such criticism -- though unpleasant -- far more readily. But from an anonymous moron on the Web with an ax to grind? Yeah, right. The public nature of such comment flame wars tends to demand a response, which in me brings out the snarky, sarcastic, condescending side of my nature. This is a character flaw I would rather not practice to perfection. Furthermore, there is barely enough time to post semi-intelligent essays on this blog. Devoting additional time to extinguishing ill-willed flamethrowers is utterly pointless.

And let's get a grip, folks. This is a personal blog. It is a labor of love, a useful tool to help me organize my thoughts, and hopefully provide some value to others. If you enjoy reading, I'm grateful, and appreciate your interest. If you're bored, perhaps some other post may be of more interest, or there's a million other blogs to interest you. If it enrages you to the point of seething anger, perhaps the issue is less me than you, and you most certainly need to find some other more enjoyable and less stressful activity. Of course, if you just want to spew venom at strangers whom you dislike or hate, perhaps it's time to do a little soul-searching of your own. Just do it elsewhere, please.

For now, readers who appreciate these posts and want to express that, or want to contribute other thoughts or corrections, are more than welcome to e-mail me. If you strongly disagree with me, and wish to carry on a conversation in a mutually respectful manner, I am more than open to that, time permitting. I most certainly do not have all the answers, and will treat every such e-mail with respect it earns. If you just want to rant and seeth, do whatever you need to do to vent your rage: kick your dog, punch the wall, sacrifice a goat to Satan, whatever it takes. But please don't waste your time, my time, or my readers time with this drivel.

One point raised by my erudite detractors is worth repeating, since my response in the comments is now hidden. This is the issue of patient autonomy. For me personally, -- and for every physician I know -- patient autonomy is extremely important. The myth of the paternalistic physician snapping orders to the passive and demure patient is utterly out of touch with reality. The common thread of comment criticism was that, as a patient, you pay me your money, and you get therefore to dictate my services. This is an extremely contractual view of the physician-patient relationship. My job is a physician is to use my skills, training, experience, and intellect to determine the nature of the patient's disease or problem, to educate them on the treatment options available, and make recommendations when appropriate. The patient is entirely free to accept or reject my recommendations. I may encourage them not to reject them, and explain the potential adverse consequences of such a decision, but it is their decision entirely. There is one important distinction, however. The patient is not free to demand that I performed a service or treatment which is unethical, or which I know to be harmful to the patient. This is both my responsibility and my autonomy in the relationship. If you find that arrogant, well, tough.

This is the exact point I was trying to emphasize in my prior post: the patient is entirely free to reject a recommendation that his testis be removed, because of the high risk of cancer, knowing that a small percentage of that time there will not be cancer present. He is not free to demand that I perform a biopsy which will pose a significant risk to his life or health, where the risk far outweighs the benefit. Patient autonomy is not unlimited, although it is broad. Physicians are constrained morally and ethically from doing harm to patients deliberately, no matter what the patient demands of them, or the economics involved. A society which penalizes physicians who make such moral and ethical choices, by means of lawsuits or otherwise, is one which will live to regret the destruction of this boundary.

Update: Thanks to the many folks who wrote and encouraged me about comment trolls and asking to restore comments. I'll turn them back on this weekend -- albeit with a short leash on morons. As I've said, I don't mind disagreement (in fact, I encourage other viewpoints -- "as iron sharpens iron", etc.), but ad hominem attacks on me or against other commenters, or otherwise abusive comments, will be deleted and IPs banned. Battling the morlocks is not a productive use of my time. But I am deeply grateful to those who appreciate the blog - come back often, and leave comments!

Sunday, February 13, 2005

Sued for Proper Care

Garden statueA recent brief AP wire story highlights the adversarial and often irrational legal environment in which physicians practice today. The article, Man sues over botched testicular surgery (hat tip: Kevin, M.D.), is very brief, and it is obviously not possible to determine the validity of such a suit based on a such a brief press release or wire story.

One wonders why such a story is newsworthy at all -- but the headline gives us all the clues: there's been a medical screw-up, and it involves a sexual organ. Titillating stuff indeed -- far more interesting to readers than, say, a story about a CNN executive claiming that U.S. troops were assassinating journalists. Problem is, I strongly suspect the physician here is being sued for providing good, appropriate care.

Here's the brief description of the case:
Danny Curtis claims the surgeon at Kern Medical Center did not conduct a biopsy before arranging urgent surgery to remove a testicular tumor in July 2004, according to the lawsuit filed in Kern County Superior Court.

Doctors later discovered that the tumor was not malignant and did not need to be removed, according to court documents.

Testicular cancer is a rare but very aggressive malignancy, typically affecting men between the ages of 18-35 years of age. It usually presents as a painless lump or swelling in the testes itself, and not infrequently is ignored by the patient or misdiagnosed by physicians as a benign infection called epididymitis. The tumor may grow rapidly and spreads by the blood stream or lymph system. Patients may present with huge metastatic tumor masses in the abdomen, chest, liver or brain. This was how Lance Armstrong -- perhaps one of the most famous testes cancer patients -- presented. Although aggressive chemotherapy has made huge advances in successful treatment of such often-lethal cancers in the past decade, testicular cancer remains a killer of otherwise healthy young men.

The diagnosis is suspected in most cases by physicial examination and ultrasound. A solid growth in the testes itself -- as opposed to the structures adjacent to it -- has an extremely high risk of being malignant - about 95-97% in most studies. While biopsy prior to removal would appear to be logical and prudent, it is in fact a very risky proposition.

When the cancer is entirely confined to the testes, it is curable by simply removing the testes and the accompanying spermatic cord surgically. Biopsy violates the natural barrier confining the cancer to the testes, and risks spilling cancer cells into the surrounding tissues or the blood stream. Once this occurs, far more drastic measures are needed to eradicate the cancer, including very toxic chemotherapy treatments, or possibly radiation or additional major abdominal surgery to remove lymph nodes or tumor. The risk of serious complication -- or even death -- rises dramatically.

This is a classic example of the risk-benefit decision-making process in medicine. All medical treatments carry risks; one penicillin tablet can kill you. In the realm of testicular cancer, the calculus is straightforward: if there is a solid growth in the testes, it needs to be removed surgically, with a known 3-5% risk of removing a testes which does not contain cancer. Performing a biopsy first, to spare this small percentage of testes which do not have cancer, exposes the patient to the more serious risk of spreading the cancer, and changing treatment from simple low-risk surgery to high-risk chemotherapy, radiation or major surgery.

The details of this specific case are unknown, but easy to imagine: the patient presents to the doctor with an abnormal testes, which the doctor finds very suspicious for cancer. The physician recommends surgical removal, the patient assents, and the pathology report shows the uncommon benign tumor. The patient is understandably unhappy about losing a testicle unnecessarily (as he understands it).

Perhaps the physician did not explain the above scenario to the patient; perhaps he did, but didn't document it, and the patient doesn't remember it. If it's not on paper, it didn't happen, from a legal standpoint. There are, of course, issues of informed consent here: patients have a right to decide on treatment after being presented with the risks, benefits, and alternatives. But very few patients, when presented with the above facts, will refuse treament and take the risk of unnecessarily spreading a curable cancer.

So the informed consent issue (likely the basis for filing this case) becomes a loophole through which the unhappy patient seeks redress for an undesirable outcome. The physician likely made the correct medical decision -- one endorsed as standard of care by every expert in testicular cancer -- and is rewarded with a lawsuit.

Now of course, the physician in this case may have been incompetent, and removed a testes at low risk for cancer, or failed to meet the standard of care for half a dozen other reasons. But far more often than not, this is not the case. The outcome was bad, the loophole was found, and the solution was a lawsuit.

These are the situations which keep doctors up at night, burden the doctor-patient relationship with highly detailed, patient anxiety-provoking, time-consuming and paperwork-generating counseling sessions, and undermine the trust between doctors and their patients. Much emotional and physical energy is diverted from caring for the patient and building the relationship to self-defense measures. This is the true cost of defensive medicine: not merely the ordering of expensive, low-yield tests in anticipation of future depositions and Monday-morning legal quarterbacking, but the undermining of the trust and relationship between doctor and patient.

The case may go nowhere, but there will be significant costs to litigation even then, and inevitable emotional, personal and professional detriment to the physician. The patient may win the suit, but the settlement received will not restore his testicle. Nor will the settlement change the behavior of the physician, who likely acted in accordance with proper professional standards and training. The only effect will be to make him or her more wary of patients, and perhaps slower to remove a malignant testes in the next patient who presents with cancer.

Is this really the best system we can devise for resolving undesireable medical outcomes?

Friday, February 04, 2005

Medical Bankruptcy

Fox IslandConsiderable media attention has been paid to a recent study demonstrating a strong link between bankruptcy and medical illness. When I first read of the study in the Wall Street Journal, I must confess I was skeptical. Studies which receive large media attention are sometimes driven by an underlying agenda, and in some instances, have used questionable study populations and statistical analysis to produce a result less scientific than political in nature. One such controversial study was the Institute of Medicine (IOM) Medical Error Report of estimated morbidity and mortality from medical mistakes. The study has been widely criticized for its overly broad definition of a medical error, retrospective analysis of data over 10 years old, study populations which may not be representative, and the statistical sleight-of-hand of multiplying the findings in a small population nationwide produce a staggering estimate of deaths and injuries due to medical mistakes. Nevertheless, the study has fully entered the public consciousness, and is often quoted as a solid fact in health policy discussions.

The bankruptcy article, published in Health Affairs, initially raised some red flags. Its chief author, David Himmelstein, is a health care activist and strong proponent of nationalized healthcare -- a fact not mentioned in the media reports. While this is an entirely legitimate philosophy to promote, it is also true that such a bias might produce a study strongly inclined to reach conclusions supporting the authors preconceived philosophy.

However, after studying the article, I was pleased to find a thorough and detailed methodology which suggests a strong effort to obtain useful data as little influenced by bias as possible. Nevertheless, the big media splash suggests the authors conclusions were in line with their philosophical bent. Yet reading the study, such conclusions seem strained.

The authors reviewed nearly 1800 personal bankruptcy files from five federal courts (geographic locations not specified), and followed up approximately half of these with detailed, in-person interviews. The demographics showed bankruptcy filers to be predominantly middle or working-class, with women slightly outnumbering men. Approximately one quarter of bankruptcy filers cited illness or injury as the specific reason for bankruptcy, and a similar number cited medical expenses as a contributing factor, with uncovered medical bills in excess of $1,000. However, somewhat surprisingly, medical debtors were no less likely than other debtors to have coverage at the time of bankruptcy filing.

The media headlines trumpeted one conclusion of the study: that 55% of bankruptcies were related to medical illness or expenses. The inference in several of the newspaper articles was that lack of health insurance or high medical bills was the cause of over half of all bankruptcies. Reviewing the study, however, such a startling conclusion does not appear warranted. First of all, the 55% figure is a fruit salad of risk factors for bankruptcy. The study groups together medical bills in excess of $1,000 with major medical illness or injury resulting in loss of work time and work-related income. The more accurate conclusion, to my reading, is that illness or injury resulting in loss of job or loss of income is significantly more important, although often added to, unpaid medical bills. This conclusion is reinforced by the fact that many of those filing for bankruptcy were not without health insurance coverage. In many cases, the illness resulted in loss of employment, and subsequent loss of health insurance.

Somewhat surprisingly, few medical debtors studied had elected to go without insurance coverage. Furthermore, debtors out-of-pocket medical expenses were often well below catastrophic levels. In the year prior to bankruptcy, the average out-of-pocket medical expenses was $3,700, and the average out-of-pocket costs since onset of illness was less than $12,000.

A far more significant risk is the loss of work and income due to illness or injury. The intimate connection between employment and health insurance doubles the bet, as prolonged illness means lost income, lost jobs, and lost health insurance.

The medical dollar amounts -- annual medical expenses over $1,000, multi-year expenses over $10,000 -- certainly represent a significant burden to low or middle-income families. Yet to a far greater degree they reflect the extreme financial brittleness of those who end up in bankruptcy. The numbers cited are far less than many families spend on an automobile, or on car repairs, or to fix a leaking roof. How many of these families were living beyond their means, overextended by credit card debt or large mortgage payments, is not clear. How many women were abandoned by husbands with children to raise, and little or no income to support them? Such issues are social in nature, reflecting the breakdown of marriage commitment, the indirect effects on families from an epidemic of drug and alcohol abuse, public policies discouraging savings, individual lack of financial discipline, and a potential host of other social pathologies unrelated to health care costs. Indeed, the authors themselves admit that even universal health care coverage would not have prevented many of the bankruptcies. Medical expenses are certainly one factor, and medical catastrophy can and does result in financial devastation to some, but health care costs alone do not shoulder the responsibility of over half of all bankruptcies.