Linda MacDonald Glenn, at the Women’s Bioethics Project, offers this comment on the conflict over abortion rights:

Despite sometimes harsh rhetoric from both sides, it’s important to remember that that is there is common ground and that the dialogue must continue for any progress to be made.

Perhaps. But what constitutes “progress” in this context? What is the end-point we are seeking, and in what way does “the dialogue” advance us toward it?

For many, I suspect, the hoped-for endpoint is a time when we can finally quit hassling over this issue and move on to other things - when abortion doesn’t hijack the entire political landscape such that it is the only issue under discussion in Supreme Court appointments, elections, and religious politics. For those strongly committed to their vision of the right on this issue, however, the only acceptable endpoint is the time when their preferred policy has been immovably emplaced as the law of the land. And for those firmly committed to a particular, ideologically-informed solution to the conflict, “dialogue”, compromise, and “the middle way” usually seem unlikely to produce an acceptable endpoint; they are rather merely guarantees of an inadequate solution that inherently incorporates some degree of moral wrong.

Thus it seems to me that all this hopeful talk about compromise and common ground (often given flesh as “making abortions safe, legal, and rare”) has to be understood as an appeal to people whose greatest concern is removing the abortion conflict, not eliminating (either) abortions or barriers to abortion access. It is unlikely to appeal to the true believers on either side of the spectrum - and it is those people who keep the conflict going.

I also wonder how much middle ground there really is. Repeated surveys show a large plurality of respondents favoring legal abortion with varying degrees of restrictions (allowing both abortion-rights supporters and opponents to claim that a majority favors their cause - by claiming the large middle group is on their side because it either accepts legal abortion or accepts restrictions on legal abortion). It is tempting to characterize this group as the soft center - the “moderates” who are willing to compromise - but I suspect that many of them are really just as ideologically committed as the “extremists”, just not committed to all-or-nothing positions.

A common “compromise” position on abortion rights is restrictions on teen access to abortion, often through parental-notification clauses. This is an issue that commands broad support, including among nominal supporters of abortion rights in other cases, and so it is possible to see it as a possible “middle ground”. But it is also an issue that engenders strongly-felt passions, touching as it does on child safety and parental concern for children’s welfare, as well as on the dangers of forced pregnancy and the possibility of driving teens to unsafe abortions. I suspect that those who take positions for or against parental notification are as strongly committed to those positions as they, or most others, are to their other positions regarding abortion rights for adults. The fact that some of them have differing positions on abortions for adults and teens does not make them any more “moderate” than those who insist on all or nothing for both groups. I suspect similar remarks could be made about other “compromise” policies such as waiting periods, intrusive “informed consent” procedures, and so forth.

It is easy to be sympathetic to “extremists” who have strongly-held positions on these issues - whether “all-or-nothing” or “moderate”. Almost everyone recognizes this conflict as one with a definitive and significant moral issue at its heart (as well as many other issues such as the role of religion in society, partriarchal oppression of women’s sexuality, social control of reproduction, etc.). Few people approach it with indifference. My claim - based on a hunch only - is that, in fact, almost everyone holds their preferences regarding abortion policy more or less equally strongly. The fact that some people have preferences that involve a mix of rights and restrictions does not make them more “moderate”, in the sense of willing to compromise some part of their positions, than the “extremists” who seek a policy of virtually no access or virtually no restrictions. In other words, I suspect there are relatively few people who really do fall into the moderate middle ground - who are likely to be responsive to the call for compromise. And that is because the hope of compromise really consists more in the desire to end the conflict in whatever way is possible than to find the one right solution to that conflict - the latter being the desire of almost everyone concerned about it, whether “extremist” or “moderate”.

I have no proof that my characterization of the debate participants is correct, or that there is no workable compromise to be found. (For myself, I am what would have to be called an “extremist” for abortion rights - in the sense of favoring very few restrictions on those rights - so I am inclined to look askance at people who are ambivalent about resolutions of the issue.) What Glenn’s remarks provoke for me is a curiosity whether the context in which this debate is conducted is one that lends itself to the outcome she - and so many others - endorse, and whether that outcome is one that really comprehends an ethically satisfying solution, or merely an end to overt conflict. I have offered my suspicions on the matter, above, but I wonder how others perceive it.

One of the oddest, and most worrisome, aspects of the Schiavo fiasco is the unrelenting drive by opponents of Michael Schiavo to demonize and persecute him, apparently endlessly, even after Terri’s death. There appears to be a kind of sub-rosa revenge movement hounding him, inspired possibly by a feeling of loyalty to Terri Schiavo, though most of her “supporters” never knew her, but seemingly more by a sense that an opportunity slipped through their fingers when Schiavo’s court petition was upheld, and that they need somehow to make him bad in order to prove retroactively the righteousness of their cause.

There are the persistent claims that he beat his wife, or had made bizarre statements that he wanted her dead, or that he was motivated by a desire to claim her financial assets. The fact that these claims were patently baseless has never lessened their appeal to the surprisingly large community of Michael-haters. There have been criticisms of his appearing at ethics conferences in favor of more stringent patient-autonomy laws - as if somehow he was not entitled to speak on an issue in which, one would think, he has an undeniable and unique interest. There are those with Kennedy-assassination-like obsessions with the minutiae of Michael’s correspondence, his legal bills, the judge’s brother’s committee memberships, report filing dates, and any other aspect of the case which can be dragged up to complicate and obscure the basic ethical issues.

Now they’re trying to invalidate his marriage.

Apparently there is an explicit tenet of Catholic church law that decrees that a person who brings about the death of a spouse in order to marry another person is forever prohibited from marrying again under the auspices of the church. (They think of everything, don’t they?) The argument - obviously enough - then goes that, since Michael clearly intentionally sought his (then-)wife Terri’s death, and was during part of that lengthy process involved with and engaged to another woman, he cannot enter a valid Catholic marriage. He and his former girlfriend were recently married in a Catholic ceremony, but, the anti-Michael posse claims, that marriage must be regarded as invalid, and further, all parties to it, including the Bishop who conducted the ceremony, should be punished within the church for violating the prohibitive rule.

A somewhat overwrought, but clear enough, article in the (New York) North Country Gazette explains:

Some Catholics are calling it premeditated murder.

Many are calling for the removal of St. Petersburg Diocese Bishop Robert N. Lynch for allowing the ceremony to occur in the diocese.

It could be the latest scandal in the Catholic church—at least in the Diocese of St. Petersburg.

Michael Schiavo and Jodi Centonze were married in the Espiritu Santo Catholic Church in Safety Harbor in a private ceremony Saturday, Jan. 21.

Church law specifically states that you cannot kill your wife in order to marry another woman.

There is absolutely no doubt that Michael Schiavo was responsible for the death of his wife, Terri Schindler-Schiavo and that he intended long before her death that he was going to marry Jodi Centonze, the mother of his two illegitimate children.

That constitutes criminal behavior in the Catholic church. . . .

According to Catholic law, there is no valid union between Centonze and Schiavo. . . .

Those violating Catholic canons are liable to an ecclesiastical penalty “according to the gravity of the offense”. In the eyes of the Catholic church, Michael Schiavo and Jodi Centonze have engaged in criminal behavior.

And many feel that the person at fault is Bishop Lynch and that he should be removed from the diocese as well as the marriage publicly invalidated.

The canon does not require any judicial act or proceeding. It is automatic. Thus, by Catholic law, the marriage of Michael Schiavo and Jodi Centonze is invalid.

Actually, it’s not at all clear to me that Michael “was responsible for” the death of Terri, since the entire issue - greatly obfuscated by the protesters, but still the operative issue legally and morally - was the claim that Terri herself had requested not to be kept alive under conditions such as she endured, and Michael had no more than conveyed that sentiment to the court. In fact, Michael’s actual legal request to the court - another fact obscured by the protesters - was that the court decide what course best met Terri’s desires - it was not, at any point, a request that the court actually terminate her life support. I also don’t know from this article whether the church laws stipulate that you are in violation if you kill your spouse while intending to marry someone else, or in order to marry someone else - the article reports it both ways - but if the latter, then it is again not clear to me that Michael should be considered in violation. He certainly supported Terri’s apparent desire not to be maintained under the condition she suffered, but there is no evidence to suggest - and much evidence otherwise - that he did so because he wanted her to die so he could remarry; rather, it seems obvious he did so because he felt an obligation to her to do so, which is not incompatible with his wanting to marry someone else later, but very far from being the same thing as that desire.

However, I don’t know exactly what the canons say, and Catholic canon law is subject to its own mysteries of interpretation that outsiders have difficulty penetrating. Possibly Michael Schiavo is in violation of this rule, perhaps he is not. I don’t care very much either way. What I do care about is the fact that so many other people care.

It is a commonplace to note that America’s “culture wars” have descended to an especially vicious - and, in the political arena, partisan - tone. On the most controversial issues, we seem to have lost any possibility of disagreeing calmly, or even of imagining there is any valid dispute to be had. The moral wrongness of any rejected position translates to the moral perfidy of its supporters, and so compromise with, or even just respectful opposition to, anything one does not absolutely endorse is the embrace of evil. If one’s opponents are really wrong - and no other conclusion seems possible in a contentious moral issue - then one must not grant them any comfort or breathing space.

This attitude reached its peak in the long nightmare of abortion-clinic terrorism and murder that crested in the late 1980s, before the “conservative revolution” had made much political headway. If abortion really was murder, as such large parts of the anti-sex movement told us, killing the murderers was hardly a comparable crime - it was in fact moral righteousness. And more than a few acted on that premise. The overt violence has waned, possibly in response to bad press, possibly in response to the broader avenues that opened as conservatives gained greater political power, possibly out of recognition that they had finally gone too far. But as the bombs and bullets receded, the rhetoric of the movement heated up. Issues became referenda on the persons and personal morality of those who took sides on them - one’s opponents, self-evidently evil, became targets just as much as the issues they supported. And a pattern of personal demonization entered into conservative issues activism that has - and quite by intention, I have to think - so poisoned the atmosphere of debate that it is difficult now simply to address issues without exposing one’s life and person to the most vile and intrusive assaults.

I have laid this at the feet of the conservative movement, and I believe it’s largely true. Tempers become heated on both sides of these debates, to be sure, but abortion clinic workers do not follow protesters home and leave libelous flyers on their neighbors’ doorsteps - protesters do this to clinic workers; nobody pickets the funerals or graves of Fred Phelps’s family, calling them the most repulsive names during their most private moments - Phelps does this to the people he dislikes; nobody has a Web site with names of abortion clinic protesters, celebrating their deaths by violence at the hands of clinic workers - that’s the protesters’ schtick; neither Bill Clinton nor Jimmy Carter had “enemies lists”; the Democratic party did not call in major corporations and lobbying groups and order them to fire their Republican employees - the GOP did that with regard to Democrats. The examples are endless. And they reach down to the most petty level.

Now they’re trying to undo Michael Schiavo’s marriage. To what purpose? He’ll still be legally married - or if not they can simply get it taken care of. It has no bearing on the Terri Schiavo issue, and no practical effect regarding any of the legal issues still outstanding in that case. It’s merely an attempt to hurt him - to make trouble for someone they can’t stand to see “getting away with murder” as they themselves have defined it. This is not mere political or moral opposition - and not even the ugly phenomenon of demonization of an opponent for political advantage (though there was plenty of that while Terri Schiavo was alive). This is the even uglier phenomenon of harassment and demonization of an opponent after the fact, for no purpose other than revenge.

It bodes ill for our national discourse. The Schiavo opponents have shown themselves determined never to let the case end - to continue to fight their losing Terri Schiavo battle after every court - indeed, the Supreme Court itself - repudiated them at every single turn, after public opinion ran against them, after the case decisively ended against their wishes and after she is, in fact, dead. But with nothing left to litigate and no effective arguments at hand, they are compelled to do the only thing they still can do - hate Michael Schiavo, and make that hate manifest in whatever petty way they can contrive. And I suspect this is the beginning of a trend that will rise as the rest of modern scorched-earth conservatism has risen: it’s not just abortion or euthanasia, it’s not just every single issue that any conservative can manage to get worked up about, but it’s now every single person they can manage to define as an enemy - each such case and each such person will be litigated, prosecuted, persecuted, and dogged through and beyond the natural lifespan of otherwise-ordinary participants whose only real fault was to be part of an issue the mad dogs can’t let themselves let go of. Once, being for abortion rights mean being an outcast; then it meant being shocking and dissolute; more recently it meant being a target for murder - but now, every issue is potential grounds for persecution. You don’t have to be an abortion doctor to be a target for a lifetime of harassment - you can just be an unlucky schmuck married to a woman with a bad brain injury.

If we don’t find some way to assert the rightness of independent moral judgment - of having and living by one’s own values in spite of disagreement over which values are best - we will all become potential - and in many cases actual - pariahs at the hands of zealots who simply cannot abide, and believe they are entitled not to abide, what they don’t approve. Our marriages will be declared null by those who don’t approve of our marriages; our healthcare will take forms chosen by others; our values will be swept aside by those who don’t approve of our choices; our dissent from orthodoxy will be grounds for punishment, official or vigilante - and vigilantism will itself be given official protection. More and more there is less and less space to be let alone to live one’s own life by one’s own values. As that freedom becomes the latest target in the war on heterodoxy, we should make ourselves aware of how much we have given up and how threatened is what remains.

My recent vow to make posting here more regular almost instantly ran aground - moving to a new apartment, financial hassles, computer hassles, the usual works got in the way. I am also mindful of an early blogger’s advice not to apologize for light blogging, on grounds that nobody cares and nobody’s keeping track. But still, I want this to work and am still trying to find the way to make it possible.

So, late for Western New Year but just in time for Chinese New Year, here’s another kick at the can and another heartfelt resolution. Keep those cards and letters coming.

Much has been (and is still being) said about the - apparently true - allegations on the Smoking Gun Web site to the effect that many of the details of James Frey’s compelling, and best-selling, memoirs A Million Little Pieces and My Friend Leonard are not true. In particular, Frey seems to have grossly exaggerated the bad-boy image he creates of himself in the first book especially. His supposed brawl with police in Ohio, resulting in numerous felony charges and a 3-year prison sentence which was miraculously busted down to 3 months after intervention by his colorful rehab friends - a mobster and a federal judge - appears to have been nothing more than a simple, completely non-violent bust for “open container” and driving without a license. (The Smoking Gun canvassed every county in Ohio, finding no police or court records on Frey anywhere except for this one minor incident; the timeline of the book makes it almost impossible that any other such incident could have occurred. He did no time for that incident, and spent a total of less than 5 hours in jail before making bail.) This gap in the facts is particularly problematic because it was his reported incarceration for that incident, after completing rehab, that precipitated the tragedy, and his resulting spiral into depression, that motivates much of the second book; if the 3-month prison term never happened, how much that depends on it could have happened? There are many similar missing pieces: Frey reportedly admits adopting the heartbreaking story of the train-crash death of two teenage friends and putting himself - falsely - into the scene for dramatic effect; the friends’ families are reportedly shocked and furious. The entire story of his rehab girlfriend Lilly - the emotional heart of both books - is suspect, both because of specific factual gaps such as noted above and because the entire story becomes less plausible as these gaps are revealed. And it becomes even more suspicious - a point critics had noted as soon as the book was published - that so much of the story seems clicheic, over-dramatized, or implausible even before the facts are checked: the fallen-angel girlfriend who redeems him with her love; the livin’-large mobster buddy and his Cadillacs, flash cash, tough-guy talk, and vaguely menacing meatball associates; the poor nerdy guy who achieves moral heroism with his emotional honesty; the jaded, take-no-shit drug counselor who grudgingly respects the protagonist’s insistence on walking his own path; and Frey’s constant, self-reported encounters with authorities that inevitably end with him setting some impossible record (level of alcohol intoxication; amount of cocaine ingested; amount of pain withstood [four fillings and a root canal all at once with no anaesthetic]; ability to refuse drugs and alcohol once he sets his mind to it); and so on. Frey himself is now crawfishing awkwardly, putting up a dismissive front on his Web site (”let the haters hate, let the doubters doubt, I stand by my book, and my life”) but making excuses in interviews and simultaneously hinting evasively that the accusations might really be true. In the end, it seems apparent that Frey grossly dramatized his experiences, while insisting his was a true story and publishing it as a memoir, not a dramatization or a novel. (He reportedly offered an even-more-dramatized version of the text to many publishers as a work of fiction, before the supposedly-factual version of it was accepted as a memoir.)

This would be disappointing in itself, but it has unfortunate healthcare implications.

One of the major themes of Frey’s books is self-reliance. He contemptuously dismisses 12-step programs because of their emphasis on a “higher power”, which he does not believe in, and because they insist on both pathologizing bad behavior and creating a dependency on the program itself - with their doctrine of “recovering” (never “recovered”) and their demand of surrender to the Higher Power, they are a form of self-imprisonment. Frey - an atheist - insists on beating his addictions through willpower alone. He is confident that by simply deciding not to be a drunk or an addict anymore he can completely overcome his desire for alcohol and drugs. He breaks away from the rehab facility on a desperate after-dark run to rescue Lilly from a crack house; the tough, experienced drug counselor refuses to enter it with him because he is too afraid of “it” (drugs), and after Frey pulls Lilly away from a crack pimp and tears the drugs and pipe out of her hands, then carries her out of the building, the counselor asks “Were you close to it?” and later confesses he cannot believe that Frey actually touched a crack vial without falling to his knees that very moment to smoke it up. (”That is not supposed to be possible.”) Frey tests himself: immediately after leaving rehab he drives directly to a bar, orders $40 worth of whiskey in a single glass, and sits over it at length, breathing the vapors and bending nearer and nearer until his nose touches the liquid and he is consumed by desire to drink - then straightens up, pushes it away, and never takes a drink in the 10 years before he writes his book. His rehab counselors implore him not to do this - they are certain he will fall off the wagon within hours and destroy his precarious gains, certain that the 12-steps are the only way anyone can ever beat an addiction; they are awestricken when he goes cold-turkey on his own terms. Later Frey takes a job as a bar bouncer - like Sam from “Cheers”, being an ex-lush is no barrier to his hanging around drinkers all day.

This emphasis on willpower, and the rejection of 12-step ideology, is the most telling part of the two books from a health-policy perspective. And it is tempting to imagine now, after all the other rvelations, that Frey has overstated his case here as well as in other ways. That is very disappointing, because, to the extent that these incidents and their outcomes are fabricated, they risk inveigling other 12-step doubters into reckless behavior, or at least sub-optimal approaches to therapy. They also undermine the medical model of addition. Frey insists on a (very ironic) brutal honesty, constantly repeating “I am an Alcoholic, a Drug Addict, and a Criminal” (with capital letters) and regards an addiction “diagnosis” as a prevarication - addiction is merely the addict’s own bad choices gone out of control. (But note that his own “honesty” about his addiction appears to be grossly exaggerated, and many of his factual statements are apparently quite false.) One imagines that, post-Frey, there will be legions of freshly-rehabbed addicts running around, promising themselves they’ll quit “any day now” and playing chicken with “just a taste” of alcohol or drugs (”I can quit any time I want!”) - and potential 12-steppers who are taught that that program is a sham and they should try to make it on their own. These messages - far from explicit, but also unmistakable - backed by heroic but apparently false tales of Frey’s displays of willpower, feed the real objections there are to be made to 12-step programs with dramatic but apparently false examples. To the extent that people read Frey as an object lesson and not just a self-aggrandizing writer, he is playing with their health and their lives.

A problem with this general subject is that both the 12-step programs and their alternatives are surrounded in hype. Twelve-steppers claim that their programs are the only effective treatments for addictive behavior. The counselors in Frey’s book repeatedly state that no one succeeds in beating addiction without the 12 steps. (This serves to set up another unique James Frey superlative: the only man to beat addiction without the 12 steps. “He can even stick his nose in whiskey and not drink!”) But we know this isn’t the case, from the existence of non-12-step programs and the many people who have solved their abuse problems without formal therapy. In setting up 12-step as the be-all of addiction therapy, Frey exaggerates his triumph in succeeding without it - but to do so must pull out all the stops in “exposing” it as fraudulent and creepy.

In fact, we don’t know what makes addiction happen, and we don’t know how 12-step programs serve to overcome it. There are many common-sense elements to the programs (admit you have a problem, take one step at a time, create a network of supporters, maintain frequent reinforcement of your commitment through meetings, ceremonies, and other overt acts, etc.); there are certainly many questionable ones (admit you are “powerless”, invoke a “Higher Power”); and there are elements that raise real questions about the pathology of addiction and whether the AA model perceives it correctly (you can never be cured, you can never indulge again in the slightest way, you must atone for past sins [a good idea, but what does it have to do with addiction per se?], etc.). It is just as common-sensical to imagine that a different program, incorporating a more realistic model of addiction plus some of the more practical of the 12 steps, would be at least as effective as AA, and likely more so. The existence of atheistic recovery programs based on a modified AA model also points to this possibility.

At the same time, it is also true that AA and its like programs have done tremendous good for the many who found they worked for them personally. It’s hardly a new thing that a successful therapy can be based on a flawed clinical model - and the variations in personality, temperament, and circumstance between patients make psychology-based programs of any kind very much a hit-or-miss proposition. That 12-step programs work at all may be reason enough to retain them, even if they don’t work for everybody. In setting these programs up as almost sinister, Frey may be driving people away from an effective - if theoretically dubious - empirical therapy that is proven helpful in some cases.

What worries me about the Frey fiasco is that he verges over from telling an engaging and dramatic story to offering “insights” into addiction and recovery. (The first book is filled with diatribes about self-indulgent addicts’ victimization cant, Frey insisting angrily that the only thing wrong with him - and by extension other addicts - is his bad choices and their inevitable consequences. Necessarily, then, he becomes not only the most willful addict in history but the only honest one as well.) These insights are drawn from his personal “experiences” - experiences that seem to be not only dramatized but grossly misrepresented. But the book’s impact has spread far wider than any corrective clarifications will do, and to some extent that impact is almost certain to include an influence on readers’ perceptions of addiction and recovery, and their decisionmaking when faced with similar problems in their own lives.

The larger point, perhaps, is the pop-culturization of medical decisionmaking in general. We have ads for prescription drugs aimed at non-technical consumers, extensive - and badly-informed - debates over medical and research issues taking place in sound-bite media and partisan venues, and an increasing avalanche of plausible but delusional fad diets, pop therapies, and vaguely religious or mystical health teachings flooding an amazingly credulous marketplace. There seems to be no sense at all among the purveyors of this dramatized crap that they have any responsibility to the consumers whose choices, health, and lives they are toying with. It is very frightening that many, perhaps millions of people’s understanding of addiction has been grossly perverted by a fraudulent book that started its life as an overt work of fiction. It is more frightening that this isn’t the worst problem of this kind to be seen in the marketplace today.

Medical News Today reports that the lawsuit by the Center for Reproductive Rights against the FDA to force OTC sales of “Plan B” emergency contraception - against the FDA’s lengthy stalling tactics - can continue. The Bush administration had argued that the Center had no standing to file suit (i.e., it wasn’t a pregnant woman), but:

[Federal Judge Edward] Korman disagreed with Amanat, saying, “There’s a serious issue here as to whether [FDA is] acting in good faith”

This suit is separate from an attempt on the part of the Wisconsin Attorney General to force the FDA to release Plan B under a different legal theory.

The legal issues surrounding this case are somewhat muddled - whether anyone can sue the government because it is running inefficiently, without a showing of direct harm, is a novel question. (Surely the FDA’s behavior in this case has been execrable, but it makes equal sense to, say, sue the Post Office for being slow, sue the EPA for being useless, and sue NASA for constantly blowing up their own rockets. Citizens have an interest in seeing those agencies perform their duties conscientiously and effectively, just as they do with the FDA - so why cannot we sue them all?) However the legal issue falls out, though, the country does have a huge stake in not having its science-based policy-making apparatus corrupted by ideological or religious zealots. There are avenues for inserting political values into science-related policy, but to have the underlying science itself distorted, or simply swept aside as in the case of Plan B, leaves the community with no protection against patent dangers that require careful and accurate evaluation.

Time and again the Bush administration has not merely ignored scientific fact, but deliberately poisoned science itself, on the issues of globabl warming, pollution, reproductive health, forestry management, endangered species protection, toxic waste, and almost anything you can name. They have lent the weight of the government itself to an entrenched assault on factual reality by the religious right wing and the corporate world - the battle to invalidate science so as to avoid accountability for the scientifically-provable harms they cause with their values and policies, or the scientific falseness of their beliefs. (Michael Behe testified in the “intelligent design” schoolbook trial that “science” does not require a focus on natural phenomena - that it could embrace astrology or . . . oh, say . . . religion as well as confirmable facts. The Kansas state school board almost immediately thereafter redefined science in precisely this way. This is the intellectual standard to which the ideological right adheres.) The greatest incursion has been in the area of sexual health policy, where not merely misguided policies such as “abstinence only”, but sheer distortion of fact regarding sexual and reproductive issues, permeates Bush administration policy-making. Judge Korman grossly understates the issue: there is little question that the FDA has not been acting in good faith on Plan B, but has been carrying out a calculated campaign of obfuscation and foot-dragging - including an outright double-cross on its promise to two Senators that action would be forthcoming on the certification - for a period of years.

Whether lawsuits like this one are the appropriate resolution of this case, some resolution is necessary. Whatever policies and values the incumbent administration may bring to government, the country has a right to expect its governmental bodies will act fairly, professionally, and in a forthright manner - that they will not lie to citizens or other members of government, falsify or distort the factual basis on which policy is made, or run roughshod over their own operational procedures (or the Constitution, it should pointedly be noted in respect of many Bush policies) to ensure the outcome they unilaterally prefer.

Maurice Bernstein, MD, at Bioethics Discussion Blog, raises the question whether the standard of care changes in respect of a patient’s perceived public responsibilities. We are all familiar with “VIP care” - the extra attention, special privileges, and more-aggressive treatments that well-kn0wn or influential patients get, sometimes to their disadvantage. Such practices often arise in the context, as above, of “extra” care or privileges for the privileged, or in the context of scarcity, in which some patients are favored in the treatment lottery over others (as in the early use of “social worth” criteria for determining access to kidney dialysis machines). There has been much negative commentary on this tendency. Bernstein is asking a different question, however: whether the approach to treatment should be different for someone with important responsibilities, for instance to keep them alert longer but at a greater risk of death, to maintain the appearance of health rather than debility for PR purposes, or to help them manage some looming crisis.

If other factors are equal, such as ability to afford the medical care, should standard and accepted therapy be trumped by a “do everything and anything” attempts at therapy simply because the patient is a king or a prime minister and not a plain citizen?

Note that Bernstein is not talking about extra resources under conditions of scarcity - he is talking about a presumptively aggressive treatment strategy when the patient is a high public official. The idea, presumably, would be that prolonging that person’s life would be worth almost any hardship or risk, because they have public responsibilities or personal political goals that private patients would not have. (I’m not sure why Bernstein assumes the “different standard” would be a more aggressive standard in all cases. As I suggest above, there may be different ways of serving political patients’ goals other than aggressive treatment - trading more consciousness for shorter lifespan, for instance, or sacrificing health for false energy in the short term. But the general point is clear enough.)

From the perspective of patient autonomy, the issue is simple: if the patient has goals that are dictated in part by their political role or responsibilities, it is far from irrational for the patient to act toward those goals. And healthcare, on the strong-autonomy model, is guided by the patient’s goals and values. Presumably Teddy Roosevelt’s doctors didn’t want him grandstanding on the campaign trail and repeatedly bursting open his stitches from a failed assassination attempt, but the crowds ate it up and Roosevelt seemed to like doing it. Whose business was it but his? Similarly, if a dying leader needs an unhealthy but opportune shot of stimulant to make a last TV appearance, whose business is that? We often speak of the elderly vent-dependent patient who wants to hang on just long enough for the family to gather around them, or for a grandchild to finish school - and easily endorse those heartwarming goals as valid determinants of aggressive treatment in otherwise-hopeless cases; there is no principled reason not to take the same stance toward the cagey old pol who wants to hang around long enough to swing one more election or launch one more plot.

And, considering the patient’s role itself, clearly a strong argument can be made that leaders must sometimes take risks that ordinary citizens may avoid. It was considered commendable for the British royal family to remain resident in London during the WWII Blitz, even as many citizens fled to the countryside. Similarly, leaders may sometimes need resources and protections that ordinary citizens do not have. Few begrudge the special travel and security arrangements enjoyed by high political leaders, even though ordinary citizens have just as much right to safety and no similar indulgences. In short, leaders’ lives and the burden of risk and privilege they enjoy are different from those of regular citizens, for reasons that make sense. And if this is so in so many other areas of their lives, why should it not be so in the case of healthcare as well?

Alternatively, from an objective “normal species functioning” model, there is nothing about leaders or VIPs that makes their bodies work differently from others’, so there is no reason to change the preferred treatment in their cases. Ordinary patients’ treatment decisions are not made by reference to their social responsibilities or how they spend their time outside the hospital - these issues have little bearing on physiology - and there is no greater reason to make decisions that way for VIPs. We would expect purely evidence-based standards of care for all patients if this decisionmaking model is the one we endorse.

The question thus becomes not one of whether there are any good reasons for treating leaders differently from other citizens, but whether we conceive of healthcare as the sort of thing - among many others - by way of which we do treat leaders differently. In other words, it is a question of what model of decisionmaking we adopt for healthcare. And this question is a familiar one - a mainstay of introductory bioethics courses everywhere. Autonomy-centered models, or “holistic” (for want of a better word) models that see the patient situated in their life context, clearly accept political goals as equally-valid patient values as the more homey ones of private citizens. Only a model of decision-making that grants healthcare providers veto power over patient goals can reject political goals as determinants of treatment.

This discussion takes it as granted that a “standard of treatment” does not equate to mandatory treatment - that a VIP or politician who did not want exceptional care would be entitled to decline it. But there is one final consideration: Bernstein’s question seems to imply that aggressive or life-prolonging treatment, as a standard of care for VIPs, would be the presumptive mode of care even if not mandatory. That is, that VIP patients could opt out of aggressive treatment, but would otherwise be expected to accept it by virtue of their social role.

This presumption is difficult to situate in a patient-centered ethic of care, because, in such a context there essentially is no standard of care, or at least no presumptive treatment in any given situation. Clinical facts do not dictate treatment decisions if the patient’s goals and values are truly decisive - not even in seemingly obvious cases, because the patient may still always have some divergent values that favor a different treatment path. This, essentially, is the autonomy-based defense of non-standard treatment for VIPs, above: that their values incorporate political goals that private citizens do not have, and thus lead to treatment decisions different from those of the average private citizen. But if so there is no need to adopt a “standard of care” that presumes, or even permits, aggressive treatment for VIPs, since autonomy-centered care simply interrogates each patient in each situation and then authorizes aggressive care for those who desire it, VIP or not, and supportive care for those who desire it, VIP or not.

So it seems that even asking the question what the standard of care should be presumes a non-autonomy-based decisionmaking model. That raises the spectre that, not only would VIP patients be given more aggressive treatment when they want it, but they could conceivably be required to take it when they do not, as part of their duty to their country. (Similarly to the non-legal but presumptive obligation of Presidential candidates to reveal their health records.) Caregivers for VIP patients would be seen as serving the public good rather than their patients’ interests. (This suggestion has been made regarding Presidential physicians’ concealing of their patients’ health threats, but it has not yet been made, to my knowledge, regarding actual treatment modalities for VIP patients.)

This would be not merely a different standard of care for such patients, but a different ethic and decisionmaking model entirely for their care. That seems like quite a stretch to be making.

Stone Court has an amusing observation regarding Dick Cheney’s recent health scare:

What do you bet that the problem with Cheney’s foot that is being treated with anti-inflammatories is gout? I bet that they don’t want to call it that because of the associations with bloated aristocrats.

Press reports confirm that Cheney has previously been treated for gout, which makes this suggestion all the more likely.

There is an old game doctors play of attributing famous persons’ behavior and life stories to various presumptively-diagnosed illnesses: van Gogh was either depressive, migraine-prone, or suffered heavy-metal poisoning from eating paint; Goya may have suffered a progressive eye disease that explains the dark colors of his final paintings; George III of England’s “mad” fits were the result of porphyria, or possibly arsenic poisoning; Abe Lincoln may have had Marfan Syndrome; Byron may have been bipolar; and of course virtually everyone of note had syphilis. Cheney’s vaunted selfishness, and his habit of never denying his desires no matter how ill-advised, make gout a resonant diagnosis in his case - though he seems to lack the gourmandizing sensualism usually associated with that condition. Maybe money and oil have the same effect as pate’ and clotted cream - I wouldn’t know.

I’m as fascinated as anyone by this game, though usually suspicious of the conclusions. But I have ambivalent feelings about it: such speculations about historical figures seem to me somewhat irresponsible, since conclusive evidence is almost always lacking, and also disrespectful - an invasion of privacy in service of what is usually no more than prurient interest. Balanced against that is the questionable nature of harms to the dead: though it’s not flattering to the memory of Oscar Wilde to say he was syphilitic, it’s also true that he’s beyond complaining. In the case of still-living figures, the issue is more sharply drawn, and there is no question that the release of privileged information of this kind would be a grave breach.

That latter point seems to me relevant. It would certainly be wrong for Cheney’s doctor to announce he has gout, if Cheney has not authorized the release of that information. I think it is also wrong for knowledgeable professionals to use their training to infer facts about persons who are not their own patients, and then release that information. (For instance, when one Middle East ruler, years ago, was dying of pancreatic cancer, his handlers announced that he was resting comfortably. An American doctor was quoted in the same news story giving them the lie, saying pancreatic Ca is “the king of pain”. In that act the doctor took away that patient’s ability to control his public image, and possibly to comfort his followers - or scare off his enemies - as he chose to do. It was not literally a breach of confidentiality, but it was surely a breach of professional ethics read broadly.) And if these revelations are wrong regarding the living, then they would have been wrong had they been made in the past regarding the then-living, now-dead, famous people of history.

Certain counterpoints arise: As noted above, it is not as easy to say that it is obviously wrong to reveal the secrets of the dead after they have died. Also, there is the question of a possible duty of the famous to be forthcoming to the public with information that would be regarded as private for others - especially in the case of political figures. Arguably, we have a right to know about the Vice-President’s health, especially when the Veep has a known gamey ticker (whether we are entitled on the same grounds to know about his swollen toe is another matter). And finally, all this talk of professional confidentiality may not matter in an age when technical knowledge has become widespread, and any further desired knowledge is easily obtained over the Internet. It doesn’t take a doctor to speculate about a person’s health history now, so citing medical ethics as a barrier to doing so carries little weight. (Note that the speculative Cheney diagnosis cited above comes from a non-professional; consider the widespread discussion of the clinical facts of the Schiavo case - some of it on this blog - as another example.)

What is the point of this? That health information is powerful, and implicates central values in people’s lives. Traditionally it was vouchsafed only to obligated professionals, who were required to control and conceal it. Our culture of celebrity, the demise of the professional priesthood, and the widespread availability of both private and technical knowledge changes this dynamic, in ways we do not have an ethics to confront. (The dissemination of private medical information through legions of non-professional paper-pushers creates its own significant problem as well.) Unsympathetic as I am to Cheney and the burdens of his public position, I am not sure that quite everything about political, or just public, figures is open to comment. (And I realize I have contributed to the problem by naming him here in this post.)

And yet there is a public function served by all this loose talk. It is deliciously confirmatory of the public perception of Cheney as aloof, privileged, and self-indulgent to learn he suffers from the disease of Samuel Johnson, Edward Gibbon, and Henry VIII. Perhaps that is not the most significant political tidbit to come down the pike, especially just now, but it’s something, and perhaps something that we, his subjects and often enough victims, are entitled to consider. The political temblors that ran through the Soviet Bloc on the rumored ill health of various leaders were serious business indeed; correspondingly, the knowledge today that Cheney is hitting the high fats, or Bush is chomping pretzels again, are not without significance, and possibly, for some, hope. Are we to be denied in this matter?

As with more-traditional debates about medical privacy vs. a public right-to-know regarding the health status of political leaders, there is a question of balance to be faced in these non-professional speculations about health and behavior. It is asking a lot to ask the general public to refrain from invidious speculations of that kind. And if we are entitled to speculate freely, even to agitate with hostile intent against our leaders and their policies - and we are so entitled, I think - why are we not entitled to speculate about health matters also, especially when we, as public citizens, bear no special obligation of confidentiality?

As you see, I remain ambivalent. I want health information to be respected, which requires not just confidentiality on the part of those who receive privileged information, but - especially today with MedLine available to anyone and MDs and PhDs galore posting online - restraint among those with advanced knowledge and no such professional obligation. At the same time, I want the tradition of vigorous and broadbased political commentary - so much imperiled by Cheney and his ilk - respected and expanded. I find it distasteful to read informed speculation about what would ordinarily be private matters, even directed at those I think have an obligation to the public; I find it infuriating to see the public’s right to scrutinize and control their own government throttled by invasions of their own privacy by hostile governmental forces and by invocations of secrecy to cloak that same government’s incursions. In the end, I am tempted to conclude that Cheney’s big toe is of little moment in the battle to save our fast-dying Bill of Rights, but I don’t want to live in a world in which medical privacy has become a quaint and old-fashioned luxury.

All medical decisionmaking (as most other decisionmaking) is an application of values to given sets of facts. Sometimes the facts are so overwhelming that almost any logically-consistent set of values would point to just one conclusion; other times different people with different sets of values react differently to the same facts. But no decision is dictated by clinical facts alone: any clinical decision can only be right when it matches the goals and values the patient brings to the treatment context. The fact that some decisions are slam-dunk obvious (a cast for a broken arm; surgery for appendicitis) does not mean that the patient’s values are not implicated in the decision - only that they are so in an obvious way. When the patient’s values do not match the “obvious” expectations regarding people’s goals and desires, the right decision is similarly non-obvious.

Sue Trinidad, at the Women’s Bioethics Project, raises the issue of prophylactic mastectomy in response to diagnosis with BrCa1/BrCa2 genes, indicating a familial tendency to breast cancer. She asks:

Are there circumstances under which we could all agree that prophylactic mastectomy/oophorectomy makes sense? Would we base our decisions on clinical criteria, or other reasons?

This is asking whether there is any set of facts regarding predictions of breast-cancer susceptibility in which either every rational person would opt for prophylactic mastectomy, or at least no rational person could object to another person’s choice of prophylactic mastectomy.

Taking the latter case first, obviously, we would almost undoubtedly agree that the procedure makes sense under the (not unrealistic) scenario that: a screening procedure was developed that predicted with 100% certainty that Breast-Ca would develop, but could not predict when. Under that scenario, waiting too long would certainly give rise to a cancer that could metastasize before it was detected, while acting ahead of time could certainly prevent both the cancer and its sequellae. It’s hard to imagine that anyone would object to prophylactic surgery in that circumstance (and hard to imagine that the vast majority of women faced with such a diagnosis would not opt for it). Objecting would mean arguing that it was irrational for someone to choose an outcome of certain health over an outcome of certain cancer - which seems an unattractive position no matter what the downside (early mastectomy) may be. Given the assumption that most people value avoiding serious illness much more highly than they do their appearance or their fear of surgery, no one would be surprised at a choice in favor of surgery in this scenario. But notice that this evaluation is not our own opinion regarding the advisability of the surgery; it is merely our factual prediction regarding others’ likely opinions about its advisability - which we know from our familiarity with their psychology.

However, to the more stringent interpretation of the question: is there any set of circumstances in which it would be rationally impossible to refuse an early mastectomy no matter what your personal values may be? - the answer must be “No.” This is for the familiar reason that we cannot subject values themselves to rational analysis. There are certainly sets of facts under which most people would choose a certain thing (as I’ve argued above), because most people have at least roughly similar values, but there are none under which all people have to choose the same thing, because no one has to have any particular set of values, and there are those who do have values that are divergent or even perverse.

No matter how dire the prognosis, or how obviously imbalanced the goods and harms attending the various treatment options seem to be from our perspective, we can only react to the decision made by the affected person from their perspective, which is to say in judging whether they have made the “right” clinical decision we can only judge whether they have applied the “right” values to the facts of the case. And this we cannot do, if we believe values are a matter of personal taste. As examples, we may have a women with a morbid fear of surgery, who is willing to take her chances with chemotherapy and radiation for her eventual cancer but will not consent to mastectomy under any circumstances. We may deplore her choice of a factually much-higher-risk path, but we may not tell her whether she is “right” to be more afraid of cancer than of surgery or vice versa. (If her fear results from a mistaken appreciation of the odds of survival of each treatment, we should certainly point that out, but if it is a true personal preference, there is nothing we can say, and possibly nothing we should say, to change that.) We may even have a woman who is so concerned with her appearance she will not sacrifice her natural breast until absolutely forced to do so by disease, and hence chooses certain disease over prophylactic treatment. We may regard those values as shallow, but again have no rational grounds for opposing them. (And it would be particularly heartless to do so, given the immense social pressures that bear upon women in respect of their appearance, especially of the breasts. To force women to live in a context in which they are judged on their breasts, and then condemn them for valuing the thing by which they are judged, would be a cynicism of a kind which is hardly unknown in medicine, but no less harsh.)

This seems very obvious, and hardly worth pointing out. But it is striking how often we are tempted to ask questions like that above: “Would we base our decisions on clinical criteria [alone]?”. We never base any decisions on clinical criteria alone. But we often pretend to be surprised by patients who have “different” values when they in fact act on them.

After much complaining, and no action on my part, I’m tweaking the blog a bit. I know my clever half-gray font color was hard on the eyes; I’ve finally reverted to plain black (hyperlinks are still in a subtle gray, because, hell, using a color or something would be way too wild). My blog theme is a heavily-edited thing I pulled off some guy’s Web site, and, while I like it, it’s not that well organized, so further tweaking will be slow and subtle. Things keep going invisible because I can’t tell what the various codes do until I change them, and there’s a decided polygenetic feedback situation that makes changing some of them a dicey proposition. But I’ll try to slowly polish it until it’s got just that perfect featureless lack of color I always dreamed of.

This is just to let you know that your eyes aren’t deceiving you - you can actually read the text now. Suggestions for further improvements are welcome, though the overall basic layout is going to stay as it is. Keep those cards and letters coming!

Another case of medical futility is sparking outrage and confusion. Recent stories about the case of Tirhas Habtegiris, a young African immigrant with incurable cancer, who was ventilator-dependent at Baylor Regional Medical Center at Plano, Texas, have provoked a lot of commentary, almost all of it incorrect on the facts and principles at work in the case.

After 25 days on the vent with no sign of improvement, Baylor’s ethics committee met on the case and invoked Texas’s “medical futility” law, allowing withdrawal of “medically inappropriate” care with 10-days’ notice to the responsible parties. The patient’s family was notified and the vent was discontinued on the 11th day (36th day of vent support); the patient died immediately thereafter. The family insists that the patient was conscious until the end; there is no indication in the press reports whether this was true, but it is difficult to imagine that the ethics committee would have ruled treatment futile if that was the case.

The family wanted care to continue until the patient’s mother could be present for her death. However:

Salvi said his sister wanted to die in her mother’s arms.

A hospital spokesperson the facility offered to hire an immigration attorney free of charge to help bring the woman’s mother from East Africa.

Relatives, however, said the East African process was too lengthy.

It’s not clear, then, how they hoped to resolve the situation.

At any rate, the family is quite angry (”If you don’t have money in this country, you’re nothing. You’re not a human being.”), and commentary has focused largely on the heartlessness of the hospital’s cutting off care “for financial reasons”, with vague implications of racism thrown in. A lively debate on these lines has been going on at DailyKos, inflamed in part by Kos’s YucatanMan’s uncritical declarations that the patient was in fact conscious and that the decision was made only on financial grounds. However, economist Steven Landsburg has an article in Slate arguing that such a decision is justifiable as a question of marginal value.

The back of my envelope says that a lifetime’s worth of ventilator insurance costs somewhere around $75. I’m going to hazard a guess that if, on her 21st birthday, you’d asked Tirhas Habtegiris to select her own $75 present, she wouldn’t have asked for ventilator insurance. She might have picked $75 worth of groceries; she might have picked a new pair of shoes; she might have picked a few CDs, but not ventilator insurance.

She might even have picked something health-care related—a thorough physical exam, or, if there were better markets for this sort of thing, $75 worth of health or disability insurance. I doubt very much, though, that with $75 to spend, she’d have chosen to insure against needing a ventilator as opposed to any of the other minor and major catastrophes to which we mortals are susceptible. . . .

The issue is: Given the current system, should or should not the federal government (or Baylor Medical Center, or somebody) effectively guarantee that nobody will ever die for lack of a ventilator? In other words, should poor people be given ventilator insurance?

The bloggers at Daily Kos say yes. But for the same cost, we could give each of those people a choice between ventilator insurance on the one hand or $75 cash on the other hand. . . .

[C]hoices have to be made. A policy of helping everyone who needs a ventilator is a policy of spending less to help the same class of people in other ways. Accounting for “economic considerations” means—by definition—trying to give people what they’ll value the most. In other words, economic considerations are the basis of true compassion.

None of these discussions seems to recognize the actual decision-making process underlying the Texas case, or the values that inform that process. The fact that the law allowing termination of futile treatment was signed by then-Governor George Bush makes it easy to assume the rationale for the policy is, in fact, “killing people for money”, but that’s not the case. The medical-futility law was hammered out as a compromise between medical providers, who wanted freedom to make decisions on purely clinical grounds, and “pro-life” groups who wanted continued treatment in almost all cases. The result is a fairly reasonable futility policy that allows for termination of truly useless treatment but still leaves patients’ families with a range of options.

The working of the law is this: continued treatment is required whenever it provides a “medical benefit” - presumably meaning some sort of desirable, clinically-measurable outcome, though not necessarily a cure - to a patient who is already under treatment, regardless of the patient’s ability to pay or the likelihood of a cure for the patient’s underlying disease. The futility law has nothing to do with whether the patient is “terminal” (it also has nothing to do with whether the patient is “brain dead”). It allows for termination of ongoing treatment, including life support, when it is determined by clinicians that there is no available treatment that would be “medically appropriate” - again defined in terms of providing an clinical benefit. These are cases of “medical futility” - cases in which there is no reason to believe the patient can achieve tangible benefit from any available treatment. In such cases, the hospital can, but is not required to, issue a notification to the appropriate decision-maker and terminate the treatment upon 10 days’ notification. The determination that treatment is futile must be confirmed by clinical consultation and by the facility’s ethics committee. The family is empowered to seek an alternative placement for the patient in a facility willing to continue treatment, and the treating facility is obligated to assist in this process. If another facility cannot be found, the treating facility can discontinue the futile care after the 10th day.

Money certainly does enter into this process: the only reasons that a facility would be likely to initiate a futility termination are when the patient is using irreplacable resources that are needed by other patients, and when the patient cannot pay for the futile care and the hospital is likely to be forced to eat the cost of the hopeless treatments for a patient who cannot benefit. A family that requested futile treatment and could pay for it would probably be accommodated, within reason, as long as there was no conflict involving scarce resources needed by another patient. This would ease the family’s state of mind and prevent conflict or bad publicity for the facility - but it would essentially be an indulgence of the family’s unrealistic hopes predicated on their willingness to pay for that indulgence, not an exercise of reasonable clinical practice. Similarly, the reason other facilities refused to take this patient in transfer (and have likewise refused in several other high-profile cases of this sort) is because they would not be reimbursed for the care, and were essentially being asked to agree to pay for indefinite futile treatment at the family’s request, out of their own pockets. Not surprisingly, every facility contacted with this request declined to do so. And the reason payment will not be forthcoming is not merely that the families do not have resources, but, even where the patients have insurance, the terms of insurance often preclude payment for futile treatment. Money is a factor in these decisions, it’s true. Basically, nobody wants to pay for expensive, pointless care - but families often demand it, and then blame the treatment facility that happens to be on the hook at the time the futility determination is made, insisting that they continue such treatment at their own expense and charging they have “killed the patient for money” if they do not.

However, money is not the only factor in these decisions, and not the determining factor in whether treatment is discontinued. The futility law can only be invoked when clinical professionals, including consultants not directly involved in the patient’s case, determine that continued treatment would be clinically futile. The facility ethics committee must ratify that determination, and in doing so would typically take into account non-clinical values such as the patient’s expressed preferences and the possibility of bringing treatment to a meaningful close through a family gathering or religious ceremony. Hospitals often continue treatment beyond the 10-day notification period to allow for these possibilities (they apparently acted in the Habtegiris case when it became clear that that was not possible). More importantly, the condition of clinical futility must be present in order for treatment to be terminated; treatment must be continued if it is clinically beneficial, even if the patient cannot pay. Thus, lack of ability to pay does not itself authorize termination of treatment; it is only clinical futility that authorizes termination - lack of ability to pay is often the trigger for termination when treatment is futile, but only futility itself justifies that termination. And so this policy cannot be one of “killing patients to save money”, because, by definition, the clinical outcome in these cases would be the same whether treatment was continued or not.

The Habtegiris case was one of clinical futility - certified as such by the clinical staff and the ethics committee. The family claims she was conscious at the time of her death, but it is hard to credit this account - if so, and the ventilator was obviously what was keeping her alive and therefore conscious, then her vent was clearly providing a clinical benefit that the committee could hardly have overlooked! More likely, her family was “pulling a Schindler” - convincing themselves of what they wanted to believe in the face of contrary clinical evidence, then whipping up public support in favor of their hoped-for perspective. Kos YucatanMan endorsed their claim without even mentioning the concept of futility or the clinical and ethics reviews that determined she was not benefiting. Many of his readers complained of “lack of compassion” without arguing for a particular correlation between compassion and expected benefit (it would be a strange correlation that held “compassion” required doing nothing useful at unlimited expense, but that is the substance of their implicit demands). Landsburg’s entire economic analysis is also devoid of the words “futile” or “futility” - though that is the heart of the law, and the decisionmaking procedure, that produced the outcome he analyzes.

There is no question that the concept of futility is a challenging one, and one that creates grave conflicts between patients or their families and the efficient provision of healthcare. If money (and resources, and bed space, and staffing . . . ) were no object, we could provide unlimited care for anyone, no matter how hopeless. We could indulge whatever unrealistic hopes for “miracle cures” families chose to nurture. It is not clear we would be benefiting families by encouraging such hopes, but we would at least be granting their wishes. But money and resources are always an object, especially in healthcare. And when faced with indefinitely-prolonged outlays of scarce resources at the demands of others who have the luxury of nurturing hopes they do not have to pay for, some kind of line must be drawn. “Futility” draws that line at the point of unlimited expense for zero benefit, which is hardly the same thing as “killing patients for money”. If we are going to consider carefully how to meet the challenges of continued care without benefit, we must at least stop sensationalizing these cases and respect the actual clinical facts that drive them. Then we can consider what values come into play in responding to those facts.

ADDENDUM: I previously blogged on similar cases under the same Texas law here and here. The former link has been excerpted for a book on euthanasia, forthcoming from Thomson/Gale press. It is clear that jumping to conclusions about bad intentions under this law is a common and recurring problem. I can sympathize, but I want to emphasize that the concept of futility is one that is well-known in bioethics circles and has been widely-debated by well-meaning and, yes, compassionate people. In my opinion the Texas law is well-crafted and does a good job respecting the interests of all concerned parties.

The Chicago Tribune has a good article on a developing issue in the prescription drug field: the patent on one of the leading “statins” - cholesterol-reducing drugs - is about to expire, opening the way for generic drug equivalents at lower prices. Glenn McGee’s take on this development: “Large fries. Greasy pizza. And in Philadelphia, scrapple and cheesesteaks. A bright future beckons.” - but there is a lot more at steak than cheap penance for bad habits. This development is already - 6 months ahead of time - setting off ripples in the drug-pricing field that illustrate certain common themes in the area of access to healthcare and healthcare financing.

Zocor, the No. 2 selling drug in the United States, goes off patent in June, setting the stage for a cheaper generic copy of what has been a pricey prescription for millions of Americans, their employers and insurers for several years. . . .

Zocor’s co-payments as a generic could be half of the co-payments of branded products like Lipitor and AstraZeneca PLC’s Crestor. Because Lipitor, Zocor and Crestor are in the same class of drugs, called statins, health insurance plans and pharmacists are going to be encouraging consumers to pick a generic of Zocor because the statins are deemed similar, analysts say. . . .

Perhaps even more problematic for brand-name rivals of Zocor is that some pharmacy benefit managers will begin listing brand-name Zocor as a “preferred brand” name in their preferred lists of drugs, known as formularies, even before the drug goes generic. . . .

By putting Zocor into a preferred category before it goes to generic, “pharmacy benefit managers are trying to make branded Zocor their [plan enrollees’] first choice, that way the switch to generic is going to be easier,” said Al Rauch, pharmaceutical industry analyst for A.G. Edwards in St. Louis. “The whole idea is to get people prepared for a generic . . . a therapeutic substitution.”

In other words, not only are benefit managers engaging in the traditional maneuvers of raising premiums and charging extra for “off-list” drugs, to force patients to use only those medications that are cheapest to provide, rather than the ones the patients want, they are going further to deliberately manipulate patients into using particular drugs that are about to go generic, so those patients will then come to accept those drugs as their “regular” medication and thus prefer the generic version of the same drug when it becomes available.

The justification for this is the claim that not only are generic and name-brand versions of a given drug equivalent, but in some cases all drugs of the same pharmacological category are deemed equivalent (by the non-clinicians who serve as “benefit managers” for the payer organizations).

“This [statin] class of medications is similar in action and they have been proven to do pretty much the same thing,” said Elizabeth Young, a pharmacist who is director of formulary services for Walgreens Health Services, the managed-care subsidiary of pharmacy giant Walgreen Co., the nation’s largest drugstore chain.

“Lipitor, Zocor and Crestor are pretty much interchangeable,” Young added. “It’s a great win for consumers.”

However, name-brand manufacturers can cite studies showing slight differences between medications, and then claim that theirs is preferable, at least for some subset of patients.

Less than half of all patients being treated for high cholesterol are getting to goal–and it’s even worse for those patients who are considered high-risk,” said Emily Denney, spokeswoman for AstraZeneca, maker of Crestor. “We know that Crestor can help many of these high-risk patients lower their cholesterol better than other leading statins.”

Pfizer pointed out head-to-head studies showing its Lipitor has advantages over Zocor, including lowering risks of heart disease.

“You really have to think about what is best for patient care,” said Dr. John Tsai, a cardiologist and Pfizer’s medical team leader for Lipitor. “The best care based on these clinical trials is that Lipitor shows benefits you get in terms of cardiovascular risk.”

[Note the distinctions: one study shows more patients on Crestor reach their goal cholesterol level; another study shows more patients on Lipitor avoid clinical heart disease. And so it goes.]

And, of course, marketers of the name-brand drugs are using exactly the same tactics to protect their market share as payer organizations are using to shift patients to lower-cost medications:

To combat the push by pharmacies and insurers of patients toward generic Zocor, the drug’s rivals are expected to step up advertising and marketing. Pfizer already spends more than $100 million on promoting Lipitor to doctors and consumers, and analysts expect the company will step that up in 2006.

“They want to encourage people to be on Lipitor now because once Zocor goes generic, there will be a heavy push [by pharmacy benefit managers] to put them on the generic,” Rauch said.

As with the tactic used to shift patients to generics (penalize them for using any any name-brand drug other than one that is just about to go generic, then feed them the generic alternative when it becomes available), the “bait-and-don’t-switch” is used by the patent-drug makers as well: convince consumers or doctors that there is some benefit to using a name-brand drug, and build up their reluctance to switch when a generic version of a competing drug becomes available.

The clinical issues are complicated but not unresolvable: many competitors in large drug classes do have similar effects and are somewhat interchangeable, but not in all cases. There is also extensive research suggesting that quality control among many generic drug makers is not as high as among the name-brand originators of the drugs, and that the substitution of different supposedly non-active ingredients can be problematic. But in principle it should be possible to determine which drugs are safely interchangeable with which others. And in principle this information should be valuable in determining which drugs are worth a premium in comparison to which others.

The problem, of course, is that, although much of this information is available, it plays almost no role in determining which drugs are made available to patients. The decisions that are made are made on almost entirely financial grounds: payers invariably argue that all drugs of a given kind are equivalent and use whatever coercion they can command - namely, imposing added costs for people who have already paid the premium for health covereage in the first place, if they do not accept the treatments and conditions imposed by the payer - to force patients into accepting the cheapest one available without reference to that particular patient’s clinical condition or history; drug makers invariably argue that their one drug just happens to be the best available for a particular condition, and that no substitute, and even no equivalent, would be acceptable, thus payers must accept the price demanded by the maker as the only reasonable means of providing patient care.

If these patterns were not so predictable, and the financial motivations behind them not so nakedly obvious, it would be worth considering whether some coercion of patient preferences might not result in a more efficient healthcare system. But the towering conflicts of interest driving the major players in this cynical game, and the fact that, without exception, the supposed professionals employed by each side just happen to come to the conclusion that the interests of patient care and ethics coincide precisely with their employers’ financial interests in every case, make any of this too much to swallow. Like the most manipulative of politicians or the most dishonest of debaters, each side seizes on trivial claims favoring its position and declares them decisive, gutting not only fact-based clinical decisionmaking but the idea of science-based medicine itself.

The result is that consumer choice is constrained entirely by the financial interests of those who have the power to influence the consumers’ behavior (which is to say: to penalize them for acting on unapproved healthcare preferences) - even when developments favor the consumers’ interests! Generic drugs are a good thing for patients - when they are clinically appropriate, and when they add to patients’ ranges of choices and treatment alternatives. When they are imposed as the cheapest and only alternative whether patients prefer them or not - or at least when all other alternatives are held behind a barrier of a 50% or more price penalty - they are simply another way to sell patient welfare down the river for others’ financial gain.

Glenn McGee may be ecstatic over cheap treatment for the heart disease he’s eating himself into, but I’ll bet he has a health plan that makes it possible for him to get what he really needs if he really needs it. Few Americans do; what they get is what someone else decides they need, on the basis of that other party’s interests - which is enough to give you heartburn without the cheesesteak and pepperoni pizza.

Hat tip: AJOB/bioethics.net

This begins the first full calendar year of Sufficient Scruples. The last 6 months or so have been interesting and fun, but I’m still struggling to build readership, and trying to figure out how to make the blog as unique and as useful as possible. Sufficient Scruples is not quite a “new blog” anymore, but I think of the last half of 2005 (since the birth of the blog) as a shakedown period. Beginning with the New Year, I want Sufficient Scruples to play a distinct and particular role in ethics blogging, and to perform a service for readers with a certain perspective on these issues.

As many past posts should make clear, my penchant is for longer, discursive entries, and not so much commentary on every “breaking news” item that pops up. My temperament and the amount of time I have to put in make this work better for me. And there are lots of bloggers keeping abreast of the headlines - most of them are better than me.

So one thing I will try to do is find more issues of real significance in conceptual or ethical terms - rather than those that happen to be relevant as of the moment - and focus on teasing out what they have to tell us about ethical health care in general. Sufficient Scruples will be a place where particular incidents and news events will serve to illustrate larger ethical themes, and perhaps point up conflicts or difficulties attending the principles that relate to those issues.

I will also try to post more regularly, though it’s hard doing it alone, especially if you make a habit of longer posts. But this at least frees me from feeling guilty that I’m not discussing every latest event or hot topic. Look to the right and you’ll find a blogroll full of up-to-the-minute bloggers who are really hot on current issues, and have great things to say.

Another thing I will do is get podcasts going as soon as possible. (I’m jonesing for the Blue Snowball, the best USB microphone available, and at $139 just exactly $139 more than I can afford.) That was part of the original plan, but it fell by the wayside during a somewhat trying second half of 2005.

Also, I will try to expand the library of “White Papers”. (I hope to god someone’s reading those.) Any feedback on whether those essays are useful, or suggestions as to issues on which you would like to see a broad, expository discussion, are welcome.

In these ways and others I hope to supercharge Sufficient Scruples in 2006 and move onward and upward. I hope there is a niche for considered, long-form (by blogging standards), deliberative discussion of ethical principle in the healthcare setting. That’s what I will try to provide; we’ll see how well it works.

One problem, though, is readership. I don’t seem to have any. It’s still early days, but things are definitely lagging in that department, which is very frustrating. Posting and linking more will help, but I don’t know what else to do. One plea I would make to readers: say something! I know I get more readers than comments - go ahead and give some feedback, respond to each other, let me know y’all are out there. I can talk to myself at home. Seriously, it would help me feel this was worth doing if I knew that anyone was listening.

But for those who are, thanks so much, and stick around. 2006 is a new beginning and a new opportunity! Help me make the most of it!