The Whitewashed Tombs of the Right

“Woe to you, scribes and Pharisees, hypocrites! For you are like whitewashed tombs, which outwardly appear beautiful, but within are full of dead people’s bones and all uncleanness.”– Matthew 23:27

I received several comments on last week’s post about Hubertus Strughold, so I thought I’d follow up with another post.  The fact that Strughold has been well-respected in American medical circles despite his leadership in medical experimentation in Nazi Germany may shed light on deep-seated philosophical problems that undergird America’s healthcare crisis.  It is no secret that the Allies marveled at the technological and scientific capabilities of the Germans as they marched through that country in the final days of World War II.  Though it used the scientists of the Third Reich to the ultimate success of putting a man on the moon, American medicine may also have adopted harmful philosophical ideas that cripple U.S. medicine to this day.  The technological and scientific accomplishments of American medicine may be the whitewash that hides the philosophical problems that are the dead people’s bones that affect patient care and make us incapable of solving systemic healthcare problems.

Dachau, notorious for its human experimentation

Several writers on this blog have commented on the failures of the “business model” of medicine.  Joe Gibes has written several posts on the subject (see his “Black Friday” post), and Steve Phillips has recently mentioned the “manufacturing efficiency” that has been brought to human reproduction.  It is well-known that many Americans sided with the National Socialists in Germany in the 1920s and 30s because they saw them as a bulwark against the tide of communism that seemed to be sweeping over Europe (Russia fell to the Communists in 1917).  In the culture wars in America the last two decades, it appears the right-wing has propelled the “business model” of medicine to the fore as a bulwark against the Left’s move to bring government-run healthcare to America.  It is a classic case of the end justifies the means.  Why Christians allied themselves with the right-wing to form the “Religious Right” in the 1980s I’ll never know.  But it looks like a deal with the Devil.

Professionalism vs. commercialism in medicine (or, Yet another Black Friday special!!!)

Some thoughts on medicine and commercialism on this, the high holy day of the gods of commercialism:

The understanding of medicine as the satisfaction of consumer wants is corrosive to the practice of medicine as a profession.

“The practice of medicine is not a business and can never be one . . . Our fellow creatures cannot be dealt with as a man deals in corn and coal; the human heart by which we live must control our professional relations.” (Sir William Osler, 1903)

A profession involves the freedom if its practitioners from the simple market reduction of the work to that of the tradesman. It is fundamentally an ethical and moral endeavor. It entails independence of judgment, a degree of self-regulation, a covenantal commitment to patients, the bearing of a characteristic set of responsibilities, and adherence to a distinctive ethical code.

*  *  *

From a hypothetical ad in today’s paper:

“Yes, you heard right, it’s our Black Friday special!! Have we in medical practice got a deal for you! Come over to St. Exorbitant’s where today, we’re offering one MRI for the price of two! (Actually, we’ll charge as high a rate as we can and take whatever your insurance company will allow!) Plus, we’ve got all the most-requested procedures of dubious benefit and unnecessary tests for your enjoyment!! (Unnecessary for your care, that is, but they might help finance that new atrium we’re building on to the hospital, which has really helped us attract patients away from our competition!)

“And if you don’t like our Hippocratic™ – brand selection, come on over to our other showroom, where you can peruse some of our less-traditional items! So, you’re not interested in our time-honored offerings of compassion, presence, and comfort? Well, we have a special discount today on Physican-Assisted Suicide (at such a bargain, too — at least, for our medical system which can finally stop paying for all those pharmaceuticals you’re taking!)! Looking for the perfect child? Sorry, we don’t have that yet, but we can test the one you’re carrying to see if she meets your specifications and tolerances! Now how much would you pay? But wait, there’s more! Our technicians can abort, ah, that is, terminate the child you’re carrying if we find something wrong, or for any other reason, or for no reason at all! We’re eager to serve — YOU! Here, the patient is King and Queen! We will do anything — anything — within our power (and your ability to pay) that you want, and if it isn’t within our power yet, don’t worry, we’re experimenting on your embryos to find ways to serve you better!  (We accept many insurances, cash, and all major credit cards!)”

 

Oh, wait — you say you can’t pay? No insurance? Well, well, funny how those market forces work, isn’t it? I’m sorry, we won’t be able to help you today. Why don’t you try the internet? I hear there’s very good care to be had there!

 

The New Sabbath: The Preaching of the Word and the Healing of the Sick

Citing our rat-race lifestyle and dependence on technological gadgets, many Christian commentators have written about our need for a Sabbath.  Many talk of a “Sabbath” as abstinence from anything for any period time while others consider the need to take a day off, though it might not be Sunday.  I think there are a number of reasons to make the first day of the week, when we commemorate the Resurrection, a time of not only worship and rest but also fellowship with those who are sick.

Luke chapter 9, for instance, shows how Jesus’s ministry coupled preaching with healing.  It is fitting that as we set aside the Lord’s Day to hear the preaching of the Word, alongside the other aspects of worship such as the celebration of the sacraments, we should dedicate the rest of the day to fellowship with others, particular those who are in need.  A good friend of mine related the story of how his friend’s church had a list of people to bring food ready within a day when she had cancer.  Too often we think of “home visits” and hospital visitation as the job of professional clergy.  However, using the Sabbath to extend the body of Christ into the homes and rooms of those who are ill is the role of every Christian.  I’m sure none of the pastors of our churches would mind if we asked for the names of those in the hospital.  Some churches print such information in the weekly bulletin.

Yes, Sunday afternoons are a good time for a nap, but I think our Lord’s Day could be richer if we spent time in fellowship with others, especially those who are ill.  As Thanksgiving approaches, I remember fondly my front-yard football games with my cousins at my grandparents’ house after a turkey meal.  That’s the spirit of the Sabbath: a time of rejuvenation for not only the mind and body but also the soul.  I also think those who are sick and injured are happy to have someone take them outside, too, even it’s not to throw around the pigskin.  I’m always disappointed when hospitals do not take the opportunity to provide at least an outdoor courtyard for patients to sit with their friends and family.  For instance, I visited a hospital that was just a quarter mile down the street from a nice, municipal park several miles in length (and an adjacent lot available no less).  When it’s a hot summer day in Texas, it’s too far to walk with someone who is ill.  Just a little more thoughtfulness and a little better planning and the hospital really could have put something nice together for its patients.

Now if you’ll excuse me … I have two loved ones to see in the hospital.

 

Truth-telling and preventive interventions

 

Recent articles in two different medical journals address an important concept in medical ethics as it pertains to screening tests: truth-telling.

The articles appeared in the New England Journal of Medicine (NEJM) and the Annals of Family Medicine (AFM). The NEJM article relates how, in the zeal to encourage people to have screening tests such as mammography for breast cancer and colonoscopy for colon cancer, “uninformative persuasion” is often employed, in which the benefits of having the test are extolled and the harms conveniently ignored. The truth behind the claims of benefit, however, is sometimes quite surprising. How effective would you estimate that mammography is at saving lives? It’s not as good as I guessed: mammography reduces a 50-year-old woman’s chance of dying from breast cancer by at best 25%. Another way to look at it: the chance of dying from breast cancer is reduced from 23 in 1000 to 19 in 1000. A reduction, yes, but not nearly as impressive as the hype would have it. Of course, it’s of paramount importance to the 4 in 1000 whose lives were saved. But wait, there’s more: for every breast cancer death prevented, three women are diagnosed with a cancer that they never would have known about because it would not have become apparent during their lifetime. Yet those women, as a result of their screening, go on to have unnecessary lumpectomies and mastectomies and radiation therapy (which can cause other cancers!) and all the emotional trauma that comes along with breast cancer treatment.

The AFM article describes the results of a study in which patients were asked to estimate the number of deaths and other events prevented by various interventions, including screening for breast and bowel cancer and using medications to prevent hip fractures and cardiovascular disease. Unsurprisingly, anywhere from 69 to 94% of participants overestimated the benefit of each intervention.

An accompanying editorial in the AFM discusses some of the reasons behind the widespread acceptance of these false beliefs. One reason is that they buttress the illusion that we are in control: “. . .false beliefs meet the psychological needs of patients for hope and safety, as well as for action, agency, and a sense of control.”  (The same holds true for physicians as well as patients.)

The fixed nature of these false beliefs means that anyone who tries to correct them is looked upon with suspicion. After all, it seems so right, so rational, so simple and safe to use preventive tests and medications to save lives. But the truth is not so simple, and the tests are not so safe. Modernity is all about control, and the hype behind these interventions panders directly to the control-mindset of modernity. But hype is lies, and lies cause harm. The duty to tell the truth is especially important in these instances when patients and their physicians must make potentially life-impacting decisions that have the potential for great harm as well as great good.

Normal one day, mentally ill the next

If you don’t have a mental illness now, you may have one soon . . .

The American Psychiatric Association (APA) publishes a catalogue of mental illness called the Diagnostic and Statistical Manual of Mental Disorders (DSM). It provides detailed checklists of symptoms for each disease (“A patient can be diagnosed with such-and-such if the patient has at least 3 of the following 17 symptoms on most days for at least 6 months, or 8 symptoms for at least 3 months, or 2 major and 6 minor symptoms for most days for at least 6 weeks. . .”).  The idea is to add consistency to psychiatric diagnosis: any two clinicians using the checklists of the DSM to evaluate a patient are supposed to be able to come up with the same diagnosis. So, a bunch of doctors at the APA get together and decide what qualifies for a mental illness and its symptoms. If you think about the stigma and the social and financial repercussions that come with a psychiatric diagnosis, you can see how important and powerful this one little book can be.

The DSM was originally published in 1952, enumerating 106 mental disorders in 130 pages. It has subsequently been revised; the current version is the fourth major revision, or DSM-IV, comprising 297 disorders in 886 pages. The APA is currently working on DSM-V, due to be published next year.

DSM-V has come under scathing attack, not least from the chairman of the DSM-IV task force. The reasons are many: the reductionism, the materialist assumptions, the arbitrary criteria, the sums of money the APA makes off of the DSM, the field trials that were a sham; but one of the more worrisome to me is the lowering of diagnostic thresholds for many disorders, which will lead to a greatly increased rate of mental disease in the general population and further promote the medicalization of many conditions previously seen as normal; and that much of this may be driven by pharmaceutical companies who sell the drugs that “treat” these conditions. This eagerness to give people diagnoses so that medications can be prescribed for them is nothing new; I remember in the 1990’s that when the first medication received FDA approval to treat “Social Anxiety Disorder” (SAD), I was suddenly inundated with invitations to talks and symposia whose purpose was to convince me that I had lots of people with SAD in my practice that would benefit greatly if I were to diagnose them and prescribe this medication.

So, DSM-V is coming. And with the lowering of the diagnostic bar for many mental illnesses, many of us might suddenly find ourselves diagnosably mentally ill. Which means we might suddenly qualify for expensive medications to treat our new mental illness. I can’t put it any better than Allen Frances, Professor Emeritus of Duke University and chairman of the DSM-IV task force: “A diagnostic system that affects so many crucial decisions in our society cannot be left to a small professional association whose work is profit driven, lacking in scientific integrity, and insensitive to public weal.”

Rationing end-of-life care

The NPR program Intelligence Squared recently held a debate on the proposition to “ration end-of-life care.” Arthur Kellermann and Peter Singer argued for the proposition and
Ken Connor and Sally Pipes argued against the proposition. What became clear very early in the debate was that “should we ration end-of-life care?” was not the right question. All the debaters agreed that in one way or another all health care including end-of-life care is rationed. In the present system on the US care is rationed by some not being uninsured and not able to afford care. There is rationing done by HMOs and other insurance companies as well as governmental agencies. It is sometimes rationed by hospital and ICU beds being full and those already being treated taking precedence over those coming in needing care.

Since a certain degree of rationing of care is inevitable the participants in the debate were actually addressing something different than the original question. What was interesting was that the questions they were addressing were not the same. Those who took the position that we should ration end-of-life care were addressing the question “should a person at the end of life be entitled to any medical treatment that the person requests no matter how very expensive or how little expected benefit there is from the treatment?” They said the answer was no. That seems relatively obvious. There are some treatments that are very expensive and which are likely to be of only marginal benefit which the patient is unable to pay and it does not seem reasonable for society to be required to provide them. If that is what is meant by rationing end-of life care, then the answer is that it should be rationed.

Those who took the position that end-of –life care should not be rationed were actually addressing the question “should the federal government ration end-of-life care in the way that it is anticipated might be done under the provisions of President Obama’s Affordable Care Act?” Their answer to that was no with reasons ranging from an emphasis on the importance of individual decision making about medical treatment, to the wrongness of being denied reasonably effective care by the government due to age or incapacity, and faith in a free market to be able to manage health care costs better than centralized government. They were clearly talking about different things.

It seems clear to me that rationing of end-of-life care and other health care is happening now and is inevitable. We cannot as a society afford to do everything that is possible. The question is “who should make the decisions and how?” Much of high cost ineffective care can be avoided if patients, their families and physicians are well informed and directly address the issues of effectiveness and cost as well as limitations on the extent of desired treatment before situations get out of hand. We need to address our culture’s values and encourage people to think about and discuss end-of-life care before it happens. Physicians play a significant role in this, but the church can play an import role as well by encouraging a Christian understanding of dying well and preparation for death rather than denial of it. When that is not effective we need societal policy that there are some very expensive and ineffective treatments that we as a society will not pay for.

Autonomy run amok

 

A hospitalist asked one of the members of our hospital’s ethics committee for help. “We’re providing more and more futile care for people at the end of their lives,” he said. “How can we stop?”

How, indeed? We find ourselves providing an increasing number of hi-tech, expensive interventions at the end of life that do little more than sustain the body functions of a patient who is dying: treatments that do not treat anything, but merely sustain physical processes, that keep the chest going up and down while organ systems are irreversibly shutting down.

There are many causes of this: one is autonomy. The ethical imperative to honor patients’ autonomy dictates that we seek the patient’s wishes regarding whether or not to continue various interventions. However, typically in these situations, the patient is in no position to declare his or her wishes regarding treatment, so it falls to a family member to make decisions for the patient.  Thus, what often happens is that the physician asks the family member to discontinue the burdensome or disproportionate treatment for the patient. But think about what they are asking: in deference to autonomy, they are asking a family member to make the decision to “pull the plug” on their loved one. Whether or not it’s a medically appropriate thing to do, nobody wants to make the decision that will lead to the death of a loved one. The burden for making such decisions should rest primarily on a primary care physician who knows the patient and has his or her trust (NOT a hospitalist who works shifts and just met the patient last Tuesday).

Autonomy is a good thing and a proper balance to paternalism. But it is not an absolute good: it can lead to physicians abrogating their responsibility to make the hard decisions regarding patient treatment, and placing an impossible burden on family members.

On the other hand is the concern that if physicians make such decisions, they would base them on something other than the best interests of their patient. Regulations that went into effect October 1st, which fine hospitals for Medicare patients who are re-admitted to the hospital within 30 days of discharge, could conceivably lead to decisions to end treatment for patients because they are a financial risk to the hospital rather than for medical reasons.

There are many who agree that the paternalism-autonomy pendulum has swung too far in the direction of autonomy. It is time for physicians to stop ducking distressing decisions by pushing them on to patients and their families. But at the same time, they (we) have to show patients that they are truly committed to their patients’ lives. The willingness of some physicians to actively promote the death of patients (as opposed to removing burdensome technological interventions that prolong the dying process) justifiably gives patients pause when they consider giving them authority to make life-and-death decisions.

When the information from medical tests can be harmful

We live in an age of technological medicine in which we have diagnostic testing available to us that would have seemed unbelievable 50 years ago. Much of that testing is beneficial. Some of the testing has a risk of physical harm and must be used only when justified by the situation. Much of it is very expensive and we need to avoid the cost of unnecessary use. Because of its many benefits we generally consider the information we obtain by doing medical testing to be a positive thing and sometimes assume it is always beneficial. We have a sense that we can never have too much information on which to make decisions about our health.

However, there are times when the information that we get from doing medical tests may be harmful. We need to realize that the potential harm from the information provided by the test is one of the risks of testing that we need to consider before doing a test. This was pointed out recently in a study done by Barbara Bernhardt et. al. about the experiences of women who received abnormal results of prenatal chromosomal microarray testing in an experimental study. The study was recently prepublished online by Genetics in Medicine and referenced in a recent article in U.S. News and World Report. The women agreed to the testing because it was being provided free to patients in a research study, but those who were found to have abnormal results found themselves in a position of having information that the fetus they were carrying had a chromosomal abnormality that was potentially serious, but how much their baby would be affected by that was not known. That left some of them wishing they had not had the testing done. The researchers labeled this situation “toxic knowledge” in which the information from the testing turned out to be seen by the women as more harmful than helpful.

This issue was also a part of the recent decision by the U.S. Preventive Services Task Force to recommend against screening for prostate cancer with PSA testing. Part of the decision was due to a lack of evidence of benefit from PSA testing, but it was significantly influenced by their understanding that the information that a screening test for cancer is abnormal leads to further testing and a confirmation of cancer leads to treatment even if there is no evidence that the treatment is helpful. Therefore the information that a screening test is abnormal can lead to more harm from further testing and the adverse effects of possibly unnecessary treatment than the questionable benefit of the testing.

While the medical tests that are available to us can provide very important information for our health, we need to remember that even the information we obtain from testing can be harmful and make wise decisions about the tests we do as well as the treatments we consider. We most commonly think of informed consent being needed when decisions are made about treatment that entails significant risk, but it can also be needed in the decision to do medical tests.

To cut or not to cut: the circumcision wars

 

The American Academy of Pediatrics recently revised its policy on male infant circumcision. Its former policy, formulated in 1999, held that there were “potential” benefits to circumcision, but not enough to recommend it routinely. The new policy, drafted after a review of the most recent medical studies, states that the potential benefits of circumcision outweigh the potential risks, and that “the procedure’s benefits justify access to this procedure for families who choose it.” The benefits are not strong enough to recommend universal circumcision; the policy states that the decision should be left to parents.

Is this a major ethical issue? There are many groups that ardently believe it is. Anti-circumcision groups (“Intactivists”) have raged against the policy statement. Listening to the argument from both sides is like a primer on ethical theory.

One side appeals primarily to consequentialist or utilitarian arguments: the overall benefits outweigh the overall risks, so it’s ethically permissible. The other side responds to the consequentialist arguments (“You overstated the benefits and understated the risks!”), but uses primarily deontological arguments: to do a medically unnecessary procedure is always wrong. Genital integrity is a human right. From a virtue ethics viewpoint, circumcision proponents have portrayed the decision to circumcise one’s infant son as an example of virtuous parenting, and I can imagine an “intactivist” group asking, “What kind of doctor (or parent) would do that?”

The argument has also been couched in the language of The Four Principles. Some appeal to non-maleficence: to circumcise risks causing harm, so it should not be done. Others appeal to beneficence: circumcision might do some good, so it is justifiable. Others cite autonomy as the most important principle: an infant cannot consent to a circumcision, so it should not be done before adulthood and only if the patient consents. There are even appeals to justice; a recent article in the Archives of Pediatrics and Adolescent Medicine estimated that the avoidable medical costs to the US medical system caused by the decline in circumcision rates could exceed $4.4 billion.

On the surface, the current debate over circumcision is unresolvable, because the argument isn’t about verifiable scientific data; the different sides are speaking different ethical languages. Depending on which ethical calculus one uses, either side could be understood to have the more compelling position. The debate also highlights the glaring weakness of appealing to the Four Principles to resolve ethical differences: there is no inherent hierarchy for which principle is more important, and in the case of infants the usual recourse to “Autonomy trumps everything else” doesn’t work well.

I am personally agnostic on the question. I perform circumcisions, so I suppose that excludes me from the “intactivist” camp. But I do not advocate for or against circumcision; I find that most parents come with an idea of what they want to do, and nothing I say in the informed consent changes that. I think the vehemence of some on either side is misplaced; on a topic of such “un-clarity,” a charitable tone is far more appropriate than incriminating rhetoric.

ICDs: Autonomy vs. Beneficence

Implantable cardioverter-defibrillators (ICDs) are like the automatic external defibrillators (AEDs) that you see everywhere these days. They deliver a shock to a heart in a lethal rhythm in order to try to restore the heart to a normal rhythm. Unlike AEDs, however, ICDs are implanted directly on a patient’s heart, are constantly monitoring it, and automatically deliver life-saving shocks whenever needed. The statistics are quite clear for patients with symptomatic heart failure in certain conditions: ICDs prevent mortality from sudden cardiac death (SCD), and are the sole effective therapy for prevention and treatment of lethal heart rhythms. And in a recent study in the Archives of Internal Medicine, more than half of doctors were so convinced by the statistical mortality benefit of ICDs that they valued the statistics more than patient preferences in making decisions about ICD placement.

On the one hand, this could be a good thing: here are a bunch of doctors who want to do what is best for their patients (the principle of beneficence). And if there were no downsides to ICDs, maybe it would be less problematic. But for many patients, the tradeoff for decreased mortality from SCD is dying instead from progressively increasing symptoms of heart failure. There are perfectly reasonable patients who, given the choice between the increased chance of a sudden death and the increased chance of a protracted death from heart failure, would choose the former (exercising the principle of autonomy); but if physicians are so enchanted by their gizmos and their ability to postpone mortality that they don’t elicit patients’ preferences — or don’t inform them of the options — then a lot of patients may be getting procedures that they would not want if they knew the full risks and benefits.

Medical technique and technology have come in the last century to wield great power. That power must be exercised with the utmost care, and with the utmost respect for persons and their inherent dignity. Our love for gizmos and all things high-tech blinds us to the fact that all techniques and technologies have unintended and unforeseen side effects. And our love for empirical, statistical data blinds us to the fact that statistics tell us exactly nothing about the person in front of us. Careful exercise of medical power requires that medical practitioners treat their patients not as part of a statistical herd but as individuals, eliciting their individual values and preferences. In many instances in modern American medicine, autonomy has been elevated too highly and led to questionable practices or to medical practitioners abdicating their duties as moral decision-makers; but the remedy for runaway autonomy does not lie in a return to a paternalism in which a doctor makes all of the decisions for a passive patient.