USAToday reports a study of the high rate of suicide and drug-related deaths in the military. The report concludes that such deaths have increased because soldiers, particularly during wartime, are “inclined toward risky personal behavior”.

After nine years of war, the Army attracts recruits ready for combat but inclined toward risky personal behavior — a volatile mix that led to more deaths from suicide, drug overdoses and drinking and driving than from warfare, an Army review concludes. “Simply stated, we are often more dangerous to ourselves than the enemy,” says the 15-month study, released Thursday.

 Commanders have failed to identify and monitor soldiers prone to risk-taking behavior, the report says. As a result, suicides among soldiers have soared. . . .

Many recruits join the Army knowing they will be sent to combat, so they may “even be more comfortable accepting high levels of risk and uncertainty in their lives,” the report says. . . .

Chiarelli commissioned the review 15 months ago as the Army suicide rate exceeded that for civilians. The study says poor command decisions helped contribute to a record 160 suicides by active-duty soldiers last year and an additional 146 deaths resulted from risky behavior such as drug or prescription medication abuse. Seventy-four of those deaths were overdoses.

Randall McElroy III, at The Distributed Republic, has a useful comment:

Internal investigations by government agencies always seem to turn out this way. It’s not the multiple deployments, the stress of fighting in a conflict where you can’t tell who wants to kill you until they’re doing it, the moral burden of shooting at innocent people, the vagueness of the goals of the conflict, or any of that. In other words, it’s not the essential part of what soldiers do these days.

It’s that, for some reason, without any causes, soldiers are engaging in risky behavior, and their commanders are just too darn earnest about prosecuting the war to notice.

However, I wanted to note the way drug- and alcohol-related deaths are handled in this story.

Half of all such deaths in this study, and a quarter of all “risky behavior” deaths for last year, were caused by drug overdoses. Soldiers are taking illegal drugs and dying from them, at higher rates than among civilians. Had these been civilian deaths, the narrative would have been simple: junkies OD and die. Surely far more than 74 civilians fatally ODed last year (though the per-capita rate is still lower); you don’t see many stories about this growing menace. What you certainly don’t see are civilian drug users characterized as “risk takers” or “comfortable accepting high levels of risk and uncertainty in their lives”. Convulsing to death with a crack pipe in your hand, if you’re a soldier, however, is apparently something like fastroping into a hot LZ or charging a machine-gun with a bayonet – the sort of thing those gung-ho heroes do because, you know, they just can’t help being so macho.

I wouldn’t mind this so much, if it were in any way honest. Identifying psychological factors that contribute to drug-taking, in fact, is a welcome step forward (even if slightly implausible in this case; chalking drug use up to simply being “prone to risk-taking behavior” is not only vague and one-dimensional, but even in some way circular). If the government were to take its own treatment of this issue seriously, and begin to sincerely probe the psychological and circumstantial factors that lead some people to drugs, we might be able to approach the issue of drug use in a more rational and realistic way. But of course that’s not what is being done here.

Characterizing drug-using soldiers as “risk-takers” is simply assigning a convenient euphemism to behavior, and its tragic consequences, that are relentlessly condemned in other circumstances. This is convenient in several ways: as McElroy notes, it lets the military off the hook for putting these soldiers under the stresses that, indirectly, killed them; it also preserves the unchallengeably heroic facade that the military is allowed to hide behind in all circumstances; and it gives these soldiers a pass on the judgmentalism that otherwise greets mental illness or drug use. Even outright suicide is treated as “risk-taking” – an absurd circumlocution that neatly obviates the inquiries into soldiers’ mental states, and the effect that military service has on them, that would otherwise be inevitable. In this way, behavior that would certainly be categorized as pathological, illegal, and disreputable in anyone else is folded into the military’s self-assumed and deliberately promoted ethos of heroism and rugged virtue.

Nobody is going to go on from here and say “Hey, you know, civilians also experience stress, self-medicate to deal with it, and exhibit a range of coping mechanisms influenced by their own psychology and their propensity for risk-taking. Maybe we should lighten up on the moralistic rhetoric about drugs and start recognizing the real-world factors that influence behavior, so we can respond more sympathetically and effectively. Maybe some proactive interventions with people at risk would help them out. Maybe our leaders have a responsibility to create better living conditions and offer better interventions to people at risk to help prevent self-destructive behaviors ahead of time, rather than sending millions of people to jail for being heroic, macho, rugged risk-takers.” Because the people who are painting military junkies and suicide cases as heroic, combat-ready risk-takers don’t really believe that and don’t really give a shit about people’s problems, in or especially out of the military. They certainly have no investment in being accurate, honest, realistic, or sympathetic about stress, pathology, and self-destructive behavior. Sugar-coating America’s Heroes to sweep a military-related drug problem under the rug avoids dealing with drugs realistically in any venue – which is the one thing any of our drug programs can never do.

Penn Jillette – magician, activist, raconteur, and all-round interesting character – posts this YouTube video in which he passes on what he says is the best advice ever given for relating to your elderly or incapacitated parents.

It is.

Thanks, Penn.

(See here for a similar observation from an equally-surprising source.)

The North Dakota House of Representatives has deliberately passed an unconstitutional law intended to foster a legal challenge to Roe v. Wade. It will probably fail in the state Senate, and almost certainly go nowhere even if it does pass, but it’s a classic example of the kind of gleeful, obstructionist bomb-throwing that characterizes the anti-woman brigade. It’s also – and equally characteristically – immensely stupid, and grossly ignorant.

North Dakota’s House of Representatives has passed a bill effectively outlawing abortion.

The House voted 51-41 this afternoon to declare that a fertilized egg has all the rights of any person.

That means a fetus could not be legally aborted without the procedure being considered murder.

Minot Republican Dan Ruby has sponsored other bills banning abortion in previous legislative sessions – all of which failed.

He also sponsored today’s bill and says it is compatable with Roe versus Wade – the Supreme Court decision which legalized abortion.

(Rep. Dan Ruby, -R- Minot) “This is the exact language that’s required by Roe vs. Wade. It stipulated that before a challenge can be made, we have to identify when life begins, and that’s what this does.”

It took some digging (for some reason, it appears, no newspaper reporting this could be bothered to include the name or number of the bill, and North Dakota’s legislative Web site seems almost designed for impenetrability), but this turns out to be North Dakota HB 1572 (2009), and it is a doozy. Apparently written by Rep. Ruby himself (clearly not by anybody faimiliar with the law), it is filled with folksy expressions of opinion, ungrammatical and ungrounded assertions, weird non-sequiturs, and vaguely written legal directives referencing “pre-born citizens”.

It is also a perfect illustration of the utterly bizarre, distorted, and obsessive fantasies that inform the anti-sex misogyny crowd’s perfervid agitation over controlling women’s reproduction, and of the deep and thoroughgoing ignorance that in many ways makes that movement possible.

First, Ruby is completely wrong on the Roe decision – which explicitly states that its holding is not dependent upon a determination of when personhood obtains, because that question has been so contentious throughout history. That particular point (along with the central holding defending abortion rights in general) was reiterated in Casey. These decisions do not require, and certainly do not request or encourage, the states to pass definition-of-personhood bills, or imply that doing so will invalidate the central holding regarding abortion. But that’s just ordinary ignorance – he simply doens’t know what he’s talking about and doesn’t let that stop him. But Ruby’s brand of ignorance is of an extraordinary kind. He reaches great heights of stupidity when he tries to describe, and legislate for, women’s actual bodies.

The sections of the bill on abortion are filled with references to, and descriptions of, procedures that either don’t exist or are so badly garbled that it’s obvious the author simply has no idea whatsoever what he’s talking about. In an apparent attempt to ban abortion by intact dilation and extraction, the bill stipulates that:

Personhood may not be denied:
a. If all the body parts are pulled out of the uterus except the legs or arms or portions of legs or arms are still inside the uterus;. . .
f. Once a uterus is placed back inside the mother.

and states that:

When the uterus with a child inside is placed back inside the mother, personhood extends to all other preborn children due to equal protection of the laws.

This is just insane. He obviously just doesn’t know how childbirth and abortion actually work. (If it weren’t so scary, it would be humorously reminiscent of the bizarre fantasies about sex entertained by the title character of The 40 Year Old Virgin: “You know how when you grab a woman’s breast… it feels like… a bag of sand?” Yeah – and abortion involves taking a woman’s uterus out of her body and putting it back in with a fetus inside it. Good God – why doesn’t Dan Ruby just write a bill entitled “Whereas: I’ve Never Seen a Woman’s Body, Be It Resolved That I Desperately Need to Get Laid”?)

It goes on from there. After all the abortion stuff (or what appears to be abortion stuff, given the unimaginable ignorance and complete fantasy that makes up the content of the bill), there are a bunch of catch-all concluding sections, amending various parts of the state criminal code to stick the words “born alive child” (i.e., partially-delivered fetus) into them. And what crimes, exactly, is Dan Ruby desperate to prevent?

12.1-20-11. Incest. A person who intermarries, cohabits, or engages in a sexual act
with another person related to him . . . is guilty of a class C felony. If the victim is a born alive child, as defined
in section 1 of this Act, the person is guilty of a class B felony.

Subsection 2 of section 12.1-20-17 . . . A person who, [has HIV and] willfully transfers any of that person’s body fluid to another person is guilty of a class A felony. The person is guilty of a class AA felony if the victim is under the age of fifteen or the victim is a born alive child as defined in section 1 of this Act. Section

12.1-27.2-04.1. Possession of certain materials prohibited. A person is guilty of a
class C felony if, knowing of its character and content, that person knowingly possesses any
motion picture, photograph, or other visual representation that includes sexual conduct by a
minor. A person is guilty of a class B felony if the minor is a born alive child as defined in
section 1 of this Act.

Yep. Dan Ruby amended three sections of the North Dakota criminal code to prevent incest or child pornography with a fetus during the course of a birth or abortion, and to criminalize the deliberate infection of a fetus with HIV+ bodily fluids during those same procedures. Because apparently, to Dan Ruby, these are crimes that need to be deal with . . . right now. (Odd that he assigns them lower penalties in the case of fetuses – blatant discrimination, I would say.)

It’s just breathtaking how pervasively and openly ignorant the anti-choice movement is. They hide behind pseudo-feminst camouflage, pretending concern over the danger to women’s health of wholly imaginary abortion traumas, and giving pro-woman names to their anti-choice organizations and fake health clinics. They claim they are merely concerned for the “human rights” of microscopic non-persons. But at bottom they simply loathe women, and sexually independent women most of all. And like most forms of prejudice, misogyny harbors a vast pool of ignorance at its core. They don’t understand sex, women, or women’s bodies; they’ve been taught to hate and fear them, and have – either deliberately or accidentally – avoided acquiring the familiarity or comfort that would lay those fears to rest. Misogyny requires ignorance (part of the reason for the knowingly false propaganda anti-choicers spew, and their desperate hostility to factual sex education). Nowhere is that ignorance more obviously – and hilariously – displayed than in this insanely stupid bill.

That ignorance is accepted as unremarkable within the anti-choice movement. This level of complete factual incompetence would be unacceptable in any other area – let alone one that touched on the freedom and autonomy of more than half the human race, or on technical issues of medical procedure – but is no barrier to anti-choice policymaking, because factual accuracy is not a pre-requisite to policymaking about women’s lives. If this clown had submitted a bill demonstrating an equal level of scientific illiteracy in any other area of healthcare, any other technical subject at all, or any issue involving the fundamental rights of any group of people whose rights are taken seriously, he would be a laughingstock. Apparently, however, no other member of the North Dakota legislature spoke against this bill even on grounds of factual meaninglessness, to say nothing of pro-choice principle. Complete incompetence and paralytic ignorance (it is not clear how this bill even could be implemented) are no barrier to being a leader of the pro-choice movement, or to legislating away women’s control over their own bodies and lives.

I don’t know whether we should laugh to keep from crying, or cry through our laughter. But it remains clear how utterly negligible women’s interests are. You don’t even have to know, or be able to identify, what rights, exactly, you are stripping away from them, and what parts of their bodies you are criminalizing, to vitiate women’s own interests in their own lives.

Michael Gerson, Bush administration tool and terminal sufferer from Conservative Comprehension Disorder, continues his pattern of getting everything exactly backwards in his Washington Post-sponsored campaign of attacks on Barack Obama. The day after April Fool’s Day (he must have missed a deadline), Gerson published another misinformed screed, this one claiming that Obama is an “extremist” on abortion for opposing laws that would have sentenced women to death. As usual with Gerson and the forced-pregnancy crowd generally, almost everything he says is factually false, and a repetition of standard right-wing myths. The column consists of nothing more than Gerson and the Post carrying water for the organized anti-woman crowd by repeating their well-worn talking points verbatim, with no pretense of originality or reportorial integrity. (more…)

There is a terrible tension in healthcare – medicine, especially – between the use of expert knowledge to serve and heal those in need, and its use to aggrandize those with the knowledge and to control, mold, dictate to or torture those who fall into their hands. Knowing what can help another can easily be mistaken for “knowing what is best for them”, and historically has been so mistaken throughout the entire history of medicine as a profession. Today, it’s hard to hear the phrase “Doctor knows best” without an ironic smirk – the same smirk we conjure up for the parallel slogans of wrongheaded patriarchal oppression “Father knows best” and “Trust your government”. But it was not long ago that that slogan was the entirely literal creed of the most respected profession in Western society, and the work of challenging that creed and establishing the primacy of patient values and autonomy was lengthy and hard-fought. Its path was marked by the graves – quite literally the graves – of too many martyrs.

The most entrenched redoubt of medical power (though least well-grounded in research and knowledge) was psychiatry. Not only did the head-shrinkers lay claim to the most occult knowledge of human functioning and health, but they stood against a patient population that was inherently and societally almost unable to defend itself. Members of, possibly, the most severely and unsympathetically stigmatized stratum of society, mental patients were given no credence, and often had no recognized legal standing, to assert their own values and choices in treatment. And it is true that in many cases, patients with mental illness could not in fact act for their own interests or competently manage their own treatment and caretaking. But the presumption that no such patient could have a valid opinion about their own care, coupled with the prejudice that they were unfit for “normal” society, and likely dangerous, meant that virtually anything could be done to anyone, if advocated by a doctor armed with a diagnosis of mental illness. The things that were done were in many cases almost unthinkable.

Howard Dully spent over 40 years thinking about what was done to him. It took him a full life of hardship and failure to finally understand his own fate, and to come to terms with it. That anyone could have survived, let alone found peace and stability, after having lived his story, is an amazement in itself.

Dully is the author (with a professional co-writer) of My Lobotomy: A Memoir. The subject of the book is exactly what the title suggests. The story it contains is heartbreaking.

Dully’s life is difficult to summarize, except to say that it was unremittingly harsh almost from birth. Dully was born in California in 1948; his father was a hard and unemotional man who was driven to work excruciating hours, sometimes at as many as 4 or 5 low-skill physical labor jobs at the same time, partly by the need to support his family, partly by his own obsessive work ethic. Howard grew up a big kid (he’s now 6’7″, 350 lbs) who picked on his younger brother; when he was 4 his mother died after giving birth to a baby brother with a severe neurological deformation – the baby was placed with relatives and never spoken of again within the family. Howard and his family bounced around various friends’ and relatives’ homes as his father struggled to earn a living, and Howard suffered constantly both from missing his mother and from the severe discipline he suffered in some of these homes. Things really got bad when his father married again, to a woman with two sons of her own. Dully claims that she simply resented and hated him; from reading both his own stories of his home life, and some of his doctors’ notes, it is easy to believe he is correct. Howard, in the meantime, was legitimately a handful for any parent: he was apparently flightly and unreliable to an extreme degree, was aversive to school work, discipline, and hygiene, and often fought with his brothers, though they had a generally good relationship. As he got older he began doing stupid kid pranks – shoplifting and stealing items from cars, and playing hooky. As a huge and growing boy, he was constantly hungry, but was not allowed to eat between meals and was beaten for taking snacks. His step-mother also had some sort of obsession with her furniture and household trinkets, and would beat Howard for touching anything in the house, sitting on the parlor furniture, or using the front door. His step-mother would beat him for any infraction, and for things that weren’t infractions; later his brothers confirmed that she did indeed beat him for things she did not mind when done by her own sons, and would rave at him for no reason at all. When his father got home, he would get another beating – his father made him choose a piece of firewood to be beaten with, and Howard developed the skill of picking ones that were flexible enough to hurt less but strong enough not to break (which would encourage his father to continue the beating with his bare hand). Between his actual behavioral problems, his pre-adolescent awkwardness, the fact that his step-mother did seem to truly want him dead, and his father’s absence and emotionally and physically violent treatment, Howard seemed doomed to a life of misery no matter what might have happened. What actually did happen is unbelievable.

Howard’s step-mother apparently conceived the idea that she could get rid of Howard if she got the weight of professional opinion on her side. She began visiting a series of psychiatrists to complain about her son’s behavior, but none of them would agree he had to be institutionalized or removed from the home. Several wrote consulting notes to the effect that they were convinced her harsh treatment was the problem and that she should moderate her behavior toward the boy. She moved from doctor to doctor trying to find one that would agree with her. Finally she stumbled onto Dr. Walter Freeman.

Freeman was the pioneer, in the US, of the new treatment of psycho-surgery. He actually coined the word “lobotomy”, and popularized the use of that treatment in this country. He was the first US physician to see the procedure, after it was developed in Europe just before WWII; Freeman brought it back to the States and traveled the country in specially-modified vans or station wagons that he called his “Lobotomobiles”, giving demonstrations of both electro-convulsive therapy (using a machine he built himself; when it broke down, he simply held the bare wires against the patient’s head for as long as he felt was appropriate, with no mechanism for monitoring voltage or current) and lobotomy. According to the Dully, relating reports of academic researchers who studied Freeman’s career, Freeman was a constant self-promoter and showman: he would perform several lobotomies in a day, every day, in front of medical audiences, liked to demonstrate how easy it was by sometimes using ordinary household implements rather than surgical tools, and developed a signature two-handed bilateral technique in which he would insert “leucotomes” (the lobtomy knife) into both lobes of a patient’s brain and then simultaneously jerk them both through the tissue with a flourish. At times, his death rate ranged upward of 20%. Nobody seemed to think this was cause for alarm. Patients were operated on without their own knowledge or consent, and authorization was freely obtained from courts or patient guardians after reassurances from Freeman that the procedure would solve all the patients’ problems. Often, no precise psychiatric diagnosis was attempted before the lobotomy was performed; lobotomies were used for conditions ranging from headaches to schizophrenia. More than a few were performed on minors, even pre-teens; there were questions about such cases, but little organized opposition. Freeman was profiled in popular magazines, and sometimes hailed as a god, delivering sufferers from their misery. There were many detractors in the medical community, but the great benefit of lobotomy was that it often made patients docile enough to live with their families without monitoring, meaning they could be discharged from the large state mental institutions that were commonplace then. This made the procedure wildly popular with the managers of those institutions, whose patients had no effective representation to oppose the treatment plans made for them by others.

After a few years, Freeman heard about, and again pioneered, a variation of the lobotomy procedure called “trans-orbital lobotomy”, often referred to as “ice-pick lobotomy”. In that procedure, a long, sharp, thin instrument was pushed along the eyeball parallel to the nose, and through the back of the eye socket (“orbit”) into the skull, and into the frontal lobe of the brain. The instrument could then be levered back and forth, and up and down, to tear through the frontal lobes and disrupt their neural circuitry. There was no method for visualizing the exact placement of the instrument in the brain, or the location, depth, or extent of the lesions created; the method was simply to stick the metal rod in through the eye socket and wiggle it back and forth to tear the brain tissue randomly. The effect was almost as dramatic as an open-skull lobotomy, but there was no external wound, and it could be performed under mild anaesthesia. The procedure could be done in an ordinary doctor’s office, and took about ten minutes. In many cases, the surgical instrument used was, in fact, an ice pick. (Freeman’s personal lobotomy instrument was labled “Uline Ice Company”.) Patients were sometimes sent home afterward in a taxi cab.

Freeman began popularizing the trans-orbital lobotomy, sometimes performing as many as two dozen procedures a day on patients in mental institutions and hospitals. In some cases, patients were operated on against their consent; after the procedure, they lacked the drive and wherewithal to sue. After some years traveling the country in his Lobotomobile, he finally settled in the South San Francisco Bay Area, near where Howard Dully’s family were living. Eventually, Dully’s step-mother asked to see him.

Freeman met with her a number of times over a period of two months, duly recording her wild stories of Howard’s unmanageable behavior (some of which later turned out to be pure fabrications – such as the story that he had beaten his brain-damaged baby brother almost to death). From the beginning the step-mother openly solicited some kind of dramatic professional intervention. Freeman hesitated at first, insisting he would have to meet the patient and interview the other family members before coming to any conclusion. (What seems incredible is that he began formulating treatment plans with the mother for weeks before ever once meeting Howard.) He interviewed Howard’s father one time; the father gave a much more balanced report of Howard’s behavior, but Freeman didn’t pick up on the clue. He began to meet with Howard himself, and found him reasonably normal though somewhat uncommunicative (who wouldn’t be?). But he kept meeting with Howard’s step-mother, who still filled him with tales of how afraid she was of Howard, how her other sons were afraid of him and were constantly beaten up by him (they deny this), and finally how Howard had beaten up his baby brother in infancy (his entire family denies this – and note that the step-mother was not part of the family at that time). Freeman seems to have accepted everything she said, and viewed Howard’s truancy and other bad behavior through this fictionalized and delusional lens. After four meetings with the step-mother, only one meeting (ever) with Howard’s father, and four visits with Howard himself, Freeman recommended that they should attempt to “change his personality” with a trans-orbital lobotomy. Howard’s step-mother immediately agreed, and took the papers home for his father to sign, which he did without ever speaking to the doctor again. Freeman cautioned the parents not to tell Howard what would happen – only that he would be admitted to the hospital for “tests”. Howard excitedly looked forward to his night in the hospital, because he had heard they gave you Jell-O there. And they did. It was two weeks after his 12th birthday.

Freeman lobotomized Howard the next day. Howard has no memory of any of the events of that day. He contracted a fever and an apparent infection (Freeman was infamous for not sterilizing his instruments before surgery; you can see, in the actual photograph of Howard’s procedure, [see photo at end, below the jump] that he is not wearing gloves), but recovered soon enough.

The rest of his life was a disaster.

(more…)

I met Robert Rummel-Hudson last night at his New York book party, celebrating the release of Schuyler’s Monster, his memoir of his daughter’s struggle to meet the challenges of having been born with polymicrogyria – a neurodevelopmental disease that prevents her from developing spoken language – and his own struggle to meet the challenges of parenthood and the demands imposed by his daughter’s condition. The book grew out of Rob’s gripping, heart-rending blog, Fighting Monsters with Rubber Swords.

Robert has been documenting, step-by-step, the pathway he, his equally-admirable wife Julie, and Schuyler (pr. “SKY-ler”) herself have followed, first coming to terms with Schuyler’s developmental difficulties, then battling the public schools’ broken and indifferent system for educating special-needs children until finally moving to a city (Plano, TX, of all places) that offered what Schuyler needed. At the urging of his growing base of enthralled fans and well-wishers, he turned the blog into a book that hit the market just this week. It has already received considerable word of mouth and small-market press attention even before release; I am convinced it is just about to explode into a real sensation, and deservedly so.

Robert has an ability to communicate the pathos and humor of his family’s situation, and even more strongly Schuyler’s unbelievably spunky and winning personality, and her brilliantly unique triumph over the multiple dirty tricks life has played her. Schuyler is without question the star of his blog (which, he says, she still has not read, nor has she the book, either, though she is fully aware that she is a media queen). It is impossible to read their story without falling in love with Schuyler (and indeed she is regularly showered with largesse by fans, often anonymous, who have visited the family’s Amazon wish-lists). “Schuyler has a posse!”, I told Rob, and he agreed that one of the most satisfying side-effects of blogging about her condition is that she has garnered such a wide-spread support base. That is due to Rob’s ability to make her come alive through his words – though it’s obvious Schuyler is giving him a lot of great material to work with.

In person, Rob comes across just as you’d imagine from his blog: funny, personable, thoughtful, fiercely dedicated to Schuyler and her needs, worried about her future, and laceratingly honest about his own uncertainties and shortcomings (which I think he overestimates). It was great fun meeting him, and I was glad to see the St. Martin’s Press staff just as enthused about the book as were the many fans who turned out to meet the author.

I mention all this simply to add this plug for a book that deserves to be read, and will break your heart and change your viewpoint when you have done so. I can’t communicate the impact of Rob’s blog or the book it gave rise to, but I urge everyone to experience them for themselves.

(1) Go buy this book:

(2) Go read this blog.

You can thank me later.

UPDATE: Fixed an editing mistake.

Joe Carter, rising star in the right-wing religious think tank milieu and blogger of the always-interesting Evangelical Outpost, makes one of his not-infrequent visits to fetus-fetish loopyland today. He contributes an overwrought and, basically, just kind of weird open letter to early-stage fetuses:

Let me begin by congratulating you on making it through the embryonic stage. Too many of our fellow humans don’t even make it as far as you have now. Many died of natural causes. Others were cut down prior to implantation by an abortifacient. Still others are trapped in the freezers of IVF clinics, in suspended animation awaiting their fate. . . .

He then offers “advice” to fetuses on how to avoid abortion (don’t have birth defects, don’t be part of an at-risk multiple pregnancy, etc.). Joe, it should be explained, is not dumb enough to think he can talk to fetuses. He just does it anyway. Naturally, all his “advice” to the fetus is really veiled criticism of the pregnant woman: for failing to carry three or more fetuses to term regardless of risk, for failing to have a child with birth defects, for being one of the roughly 0.04% of American women who pursue sex selection, or for having genetic-health preferences he doesn’t approve of.

Naturally as well, the piece goes to lengths to paint every possible alternative for a pregnant woman, except, notably, the one he approves of, as evidence of that woman’s depravity. He explicitly quotes the facts that:

Carrying three babies to term would more than double the woman’s risk of developing the most severe diseases of pregnancy, such as preeclampsia. The average triplet is born two months premature, significantly raising the risk of disabilities . . . .

But he excoriates the choice to reduce multiple pregnancies to avoid these risks. He characterizes the implantation of multiple embryos to increase chances of pregnancy (because of the high failure rates in IVF) as efforts “to save money” – but he previously harshly criticized Amy Richards, the subject of an infamous New York Times profile who had a selective reduction of her unplanned, accidental triplet pregnancy as well. So, not only is it immoral to subject yourself and your fetuses to the increased risk of multiple pregnancies, but it is also immoral to do anything about it if you do find yourself in that position. And, being unable to afford multiple rounds of IVF at $10,00 – $20,000 a shot is, of course, mere selfishness, but you’re forbidden to assert your own worth even if you didn’t pursue a multiple pregnancy “to save money”. (His pretended concern for the risks to the woman of a multiple pregnancy is clearly window-dressing; no woman is allowed to act to reduce that risk no matter how or why she encountered it.) You’re bad if you implant more than two embryos, you’re bad if you can’t afford not to, and you’re bad if you reduce the risks you face after stumbling through the previous two problems. In other words, taking any positive action to control your risks and outcomes according to your own values and desires is immoral.

The rest is just typical emotive fetus-swooning (“May our Lord have mercy on your poor fetal soul”; ” society has decided that it is better for you to be put to death”; “Your best hope is to pray and hope that others are praying for you too”) and woman-hating (there is not one reference to a woman’s “choice” that suggests there would be any positive benefit to her to control her own biological destiny; women’s autonomy is, literally, for Joe, nothing more than “the right to kill a fetus for any reason you choose” – not one of which such reasons he mentions or acknowledges might even exist). In none of the situations he mentions – birth defects, unplanned multiple pregnancies, risky pregnancies, genetic diagnosis – is there the slightest hint that being denied the right to control your own and your offspring’s future could be of any benefit. In every case, he picks what he considers the least defensible exercise of a woman’s choice not to carry a pregnancy – Down’s Syndrome, “squinting” – and mocks the very idea that anyone should be allowed to have preferences about the matter. More serious choices – Huntington’s Disease, Tay Sachs – are never mentioned, and clearly form no barrier to forcing women to continue a pregnancy against their will.

But what else would this be? I didn’t expect any sudden access of insight or empathy in such a post. I do find it useful to chart the clinical course of right-wing dementia, however. Now they’re talking to fetuses. What next? More importantly, is there an end stage, or are they all just going to wind up like Strom Thurmond, 100 years old, babbling like a banshee and yapping offensive remarks at women in their intermittent lucid moments? (OK – maybe this is the end stage. But how long can this go on?)

I need to play weaker defense.

That’s a conclusion I just now came to after struggling to understand my own reactions to things I’d been reading, and in particular to why everyone I’d been reading seemed so angry all the time. Since it seemed to me they didn’t have reasons to be so angry, there was apparently something wrong, and I was sorely tempted to put it right. I knew, too, that they wouldn’t appreciate my assistance in encouraging them not to be angry about the things they were angry about, and then they would be angry at me, which really wouldn’t be fair.

So, before even attempting to help all those angry people realize they were wrong to be so angry, I’m already [more of] the asshole [than usual] – supposedly. And that makes me angry, so I began devising all these imaginary ripostes to the as-yet-only-potential criticisms I knew I would get for helping the angry people see things my way. And the more I thought about the issues at hand, the more I had to defend myself against attacks from people I was only trying to straighten out for their own benefit, to the point that this defensiveness defined my understanding of the issues – making myself right was the test of the correctness of the positions I took. The more tenacious my defensiveness became, the harder it was to understand what all the angry people were saying except in ways that automatically made them wrong, so I could be right.

Clearly, Tenacious D is a considerable mind-fucking auto-petard that one might best be rid of if one hopes to understand others in non-assholish ways.*

* Yes, it’s also the name of the worst rock-’n-roll band in the entire world, including all the French ones.

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“Blue”, of The Gimp Parade, has an interesting post on the differing reactions non-disabled people have to the disabled in different contexts, and on the expectations they seem to have for how the disabled are “supposed to”, or are allowed to, look to non-disabled eyes.

I’ve been thinking a lot lately about what people with disabilities look like and how it influences our interaction with the nondisabled in public. What disabled people are supposed to look like is part of the interaction too. . . .

Anyone who has experienced both limping and using a wheelchair will tell you that public reactions to the two appearances differ. Same with manual chair versus power chair, white cane versus guide dog, invisible impairment versus visible one(s), and, Ballastexistenz claims, with dog versus sans dog for her as a person with autism. Visual differences cue stereotypes, and breathing on one’s own versus towing a ventilator on my scooter also makes a discernible difference. Most notably, even fewer people are willing to make eye contact. . . .

Okay, so I know it’s fear of difference and the old “there-but-for-the-grace-of” thing. And that’s fed by a history of segregation and institutionalization. I’m 37, by the way, and Americans in wheelchairs who are my age are pretty much the first generation allowed to attend public school with everyone else.

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There was some head-squeezin’ taking place over my recent claim that many disabled persons believe “life with a disability is no more to be denigrated than life without one”. It’s just obvious to many people that having a “disability” makes your life objectively worse than otherwise, and presumably makes you objectively less happy than you would be without the disability. (A particularly stark example of this took place in an infamous encounter between utilitarian ethicist Peter Singer and disability activist Harriet McBryde Johnson, who uses a wheelchair, in which he insisted – against her objections – that having a “disability” was simply objectively worse than having some mere life difficulty such as being a victim of prejudice. I have always wondered at this in Singer, who, though controversial, is not usually unempathetic – at least, he feels chickens’ pain pretty intensely.) Seeing the disabled as “the disabled” makes it very hard not to respond to them in a way that foregrounds both the disability (rather than the person) and the observer’s interpretation of its significance.

This is an especially strong intuition for progressives for whom “helping the needy” is both a natural inclination and an inherent good (implicitly requiring that “being needy” is less good than not having a need, whereby one is “helping” by removing the need). Yet many people with disabilities would deny both that disability is necessarily an objective harm and that it necessarily makes them unhappy. Simultaneously, they are accutely aware of what is difficult for them that is not for those who do not have their disability, and many seek whatever aid is available – including medical treatment – to lessen that difficulty. Grasping this dichotomy is an important part of bringing disability into the range of human norm, and “the disabled” into the community of caring that progressives seek to build.

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An old article by Mary Johnson that I just stumbled across in Ragged Edge Online asks why liberals “don’t get it” on disability rights:

During the debate over Terri Schiavo last fall, disability activists and scholars groused about both right-to-life and right-to-die advocates not understanding disability rights issues. . . . 

It’s “downright weird,” says Michael Bérubé, whose 1996 book, Life As We Know it,about raising disabled son Jamie, became a bestseller.Bérubé calls liberals “oddly reluctant to see disability rights as part of a program of egalitarian civil rights.” . . .

Many leftists, says writer Marta Russell, simply think there is no movement; some believe the disability rights movement is too small to qualify as a real “movement.” There are more substantive reasons as well. “Some leftists don’t believe disability is an oppression that belongs on a theoretical par with race, gender or class. They may think disabled peoples lives are difficult and social justice lacking but they don’t see basic underlying institutional relations at work when it comes to disablement.” . . .

“I wish they understood that it was civil rights,” says Cyndi Jones, head of the Center for An Accessible Society. “Talk to progressives or liberals (which I use interchangeably): they just don’t see it as civil rights.” . . .

Jones talks about attending progressive media conferences and being the only one there concerned with disability rights. “They never think about making sure the meeting site is accessible, either,” she says. ” When you complain, though, you’re seen as a ‘whiny cripple.’”

An activist invited to be on a liberal talk show on public television finds the producer resisting the need for a sign-language interpreter, even when the activist offers to pay the cost. A progressive bookstore owner provides a ramp to a locked entrance and offers a doorbell; he is offended when local activists protest the segregated treatment. Liberals involved in election reform organize to stop new accessible computerized voting machines, arguing that they’re open to fraud.

These are good points.

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Online Beeb has an interesting article on the debate over euthanasia in the UK. They quote Len Doyal as coming out in favor of active euthanasia, which their headline bills as some sort of shocker (readers of medical ethics literature will know this is not a new or even especially rare position to take – it has just been backburnered in the public debate on end-of-life care). The real point of interest to me was the breadth of opinion now being openly bandied about. Another interesting point is my recognition that some parts of that range of opinion are new, at least on the public stage, and some people or organizations that uphold what were once radical positions have been forced into opposing others who are now going further than those so-called radicals feel comfortable with.

All of which is by way of saying that there may be something to this slippery-slope business after all.

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Saw the X-Men movie this past week, and was struck by how explicitly the “biological deviance” theme was brought out in the plot. Of course, that is the main driver of plot tension throughout the three movies (and to some degree in the original comic books, I gather, though I haven’t read them). But, even more so than in the first two movies, the third installment delves into the bio-politics of “normalcy” and prejudice, in interesting, though somewhat complicated, ways.

It’s a juicy subject for a worthwhile discussion, and a welcome sign in these days of otherwise unbridled bigotry and repression.

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There is much buzz about a just-released report in the clinical journal Neurorehabilitation, which reports a case study of three patients, reportedly diagnosed with long-term persistent vegetative state, who were returned to full consciousness for a number of hours with doses of zolpidem, the medication in the sleeping pill “Ambien”. Clinicians and ethicists are warily interested; the “pro-life” blogosphere, of course, is uncritically beside itself over the news:

End the Madness: PVS is reversible or misdiagnosed [Pro-Life Blogs]

PVS is reversible and often misdiagnosed [HyScience]

Important News: Drug ‘Reverses’ Vegetative State  [BlogsforTerri]

Rise and Talk [Premature Terminal Delivery]

Holy Cow! Patients in PVS Awakened by Sleeping Pill [Wesley J. Smith]

etc.

The Terri Schindler Schiavo Foundation has already demanded a moratorium on terminations of treatment for all patients in PVS on the strength of this report, as has their easily-misled former spokesperson, Pamela Hennessy.

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As a follow-on to the below post on PIGD in England, Pro-Life News reports on the same story and then comments (complete with misspellings and scare quotes):

Doctors tested embryos created by the woman and her “partner” using in-vitro fertilisation (IVF) methods for the cancer gene. Only unaffected embryos were implanted in her womb, the newspaper said. But it is not reported how many babies the so call “doctors” killed in the screening proucess.

It will surprise no one, I’m sure, that this makes not the slightest sense.

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Glen McGee reports on this development in genetic diagnosis: England’s HFEA (national assisted-reproduction policy-making body) has finally agreed to authorize pre-implantation genetic diagnosis (“PIGD”) for some known cancer-linked genes (apparently BRCA1 & 2), but the genes in question are patented by a commercial corporation, Myriad, who flatly refuse to license the testing. So the regulatory barrier has been removed, but it is still illegal to perform tests which, presumably, patients want, and that could give them knowledge of a child’s predisposition to breast or ovarian cancer, because a commercial license-holder has decided unilaterally not to allow it.

I have blogged previously on the dangers of patents for ordinary genome sequences; this seems to be as stark an example as you could ask for. Basic information about people’s health status and prognosis is being withheld from them, deliberately, by an uninvolved third party acting under property rights law, of all things. Are people’s values and freedom ever going to be taken seriously in the healthcare arena?

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A group of occupational-medicine physicians has released a white paper on the issue of disability certifications for impaired workers, holding that doctors often keep workers off the job too long after an injury or illness and that the specialty should adopt a “Stay at Work/Return to Work Process” as its fundamental organizing model for treating disability. That process seeks to minimize the time workers spend off the job, which, the authors assert, would be beneficial in many ways:

We know that much work disability is not required from a strictly medical point of view. We see devastating psychological, medical, social, and economic effects caused by unnecessarily prolonged work disability and loss of employability. We also see wasted human and financial resources and lost productivity.

Finding better ways of handling key non-medical aspects of the process that determines if an injured or ill person will stay at work or return to work will improve outcomes. Until now, the distinct nature and importance of the stay at work and return to work process (SAW/RTW) has been overlooked. Improvements to that process will support optimal health and function for more individuals, encourage their continuing contribution to society, help control the growth of disability program costs, and protect the competitive vitality of the North American economy.

This may all be true, but it causes concern nonetheless. Without comment, these authors introduce multiple factors into their outcome evaluation which are not related to, and in fact may conflict with, patient welfare. They say explicitly here, and throughout the paper, that the benefits of encouraging workers to take less time off the job for disability-related reasons include, among other things, harm to the “economy” (GDP, presumably), “contribution to society”, reduced costs of disability treatments, and worker productivity. In other words, among the major drivers for doctors to determine the course of individual patients’ care are the contributions those patients can make to overall economic goals valued by their employers, third-party healthcare payers, or “society”, not the patients themselves.

To put that another way, these authors are openly encouraging doctors to admit external economic values (in addition to the many that already impact treatment decisionmaking) to directly influence their decisions regarding their patients’ recovery from illness or injury – values that run directly counter to the patients’ own. There may be a problem there.

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This story from England strikes a familiar chord: a doctor has assisted a woman well beyond the typical age of fertility to undergo an IVF pregnancy; critics claim he should not have done so because it smacks of “selfishness” and because “it would be extremely difficult for a child to have a mother who is as old as a grandmother”. Art Caplan said much the same thing in a column about a year ago: “it was wrong because there was a terrible price to pay for using reproductive technology [in the case he discusses].”

I’m uneasy about this, in a lot of ways.

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Jay Sennet posts his “Trans[sexual] Political Agenda” – a cri du coeur on the subject of outsiders’ cluelessness about the lives of those with non-normative gender status or identity.

Understanding medical personnel who don’t treat us like freaks.  Those that do should be excommunicated from their profession.  Criminal charges should be vigorously pursued at all times where appropriate.

Cheap, barrier free access to healthcare insurance. 

Retiring the Harry Benjamin Standards of Care.

The removal of transsexuality and all trans-related diagnosis from the DSM.

A federal requirement that all states must recognize requests for gender changes on birth certificates – no amendments.

A permanent ban on the “trans panic defense.” 

Permanent, federally supported anti-discrimination legislation for employment, credit, public accomodations and anything else the feds can do to protect us from all the asshats and assclowns in the u.s.

The creation of legal gender categories other than m or f.  Make it legal to carry multiple forms of identification that have “contradictory” gender information.

A federal requirement that trans prisoners be sequestered for safety.

A criminal category for prisons and mental health institutions that stop hormones of inmates.

He do like to stir shit up.

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Frank Bowe, long-time disability rights activist, has some useful ideas about strategizing by disabled communities for the upcoming US mid-term elections. The issue requires some subtlety because, as he points out, the disabled community is not as politically monolithic as many other “interest groups”, and so has less political clout as a body and is less easily approached or categorized by politicians seeking support.

Bowe tries to identify themes and issues of common interest to all in the disabled community, and offers a basic primer on electoral activism and on making connections with other communities with common interests. His post sets me to thinking about ways that other healthcare-interest communities could benefit from similar efforts. We surely need effective strategies in this benighted time.

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There’s a difficult termination-of-treatment case getting attention in England that I think, in some ways, illustrates the right way to go about dealing with these issues, as well as the frustrating complexities they present. It’s refreshing, at least, to see an intelligent discussion of quality of life, futility, and resource prioritization take place among parties who all seem sincere, informed, and rational. In the US, the same case would have religious fanatics picketing the hospital and threatening judges’ lives, while screaming ignoramuses spouted nonsense on talk shows and posturing right-wing politicians hijacked the case for their own ends. As difficult as these matters are, proof that they can be dealt with carefully and on the merits is a welcome surprise.

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Almost a year ago, Art Caplan waded into the prenatal genetic testing arena with this variation on an old trope: “Would you allow Bill Gates to be born?” I’m a bit slow on these things, so I’m just getting around to answering him. (And my answer is: given how screwed up my Windows computer system is, I’d abort Gates right now if I had the chance.)

Caplan muses:

If you could go back in time and stop the birth of the world’s most famous nerd, would you?

You probably answered my question with a “no.” Whatever Gates’ sins may be, he is the father of a computer revolution that has brought much good to many people throughout the world. Add to that achievement his current generous philanthropic activities supporting some very worthy causes, such as vaccine research and a center for autism research in Seattle, and the case for having Bill with us becomes pretty persuasive. . . .

But what if I told you it’s possible that Gates has a medical condition that accounts, in part, for both his tremendous achievements and for his “nerdiness?” Gates is widely reported to display many personality traits characteristic of a condition known as Asperger’s syndrome. Asperger’s is a mild version of autism, a more serious condition that renders many children unable to talk, be touched, communicate or socialize. While I certainly do not know if Gates has Asperger’s, his difficulties in social settings are nearly as legendary as his genius, so it’s possible. . . .

The drive for more genetic tests continues unabated. Undoubtedly the genes for autism and Asperger’s will soon be found. When they are, my question — would you have stopped Bill Gates from existing? — will take on a very real meaning.

Fewer geniuses?
There are many in the autism and Asperger’s community, like the newly formed Aspies for Freedom, who worry that the minute a genetic test appears, it will spell the end for a lot of future geniuses, like Gates. Maybe there will be fewer Thomas Jeffersons or Lewis Carrolls — remarkable thinkers who also fit the profile for Asperger’s.

(First, let me say that I am both wary of and uncomfortable with this business of “diagnosing” psychological or medical conditions in famous figures on the basis of a few imagined personality traits. I don’t think there is any reliable evidence to base a claim that Gates has Asperger Syndrome – observations about his “difficult personality” are no more than long-distance stereotyping. I also think it’s an abuse of professional insight to broadcast such claims, whether or not reliable. I have no great sympathy for Gates, but it’s still rude and insensitive to make remarks like this, and in some circumstances – public figures, for instance – it can be quite dangerous.)

I find it odd to see Caplan endorsing this line of reasoning. It’s an old one, most commonly found in anti-abortion arguments, and notoriously weak; Caplan should know better. To put it simply, if the argument against preventing certain births (by abortion, IVF embryo culling, genetic engineering, or what have you) is the utilitarian one that some people with the target condition could turn out to be great geniuses, the counterargument is that they could just as well turn out to be great villains. Medical testing does not give us diagnostic precognition (and if it did, we would undoubtedly choose to abort only the villians – making the case for doing so even stronger). Since there is no way to know that certain births will turn out to be greatly utilitarian for the world, there is no weight to an argument that we should not prevent them for that reason. (Another implication of this argument is that we should not practice birth control, and in fact should attempt to have as many children as biologically possible – since any child not conceived could be a lost genius just as much as any embryo not gestated. Unless we think we are really obligated to become desperate breeding machines seeking the inventor/entrepreneur jackpot that is the apparent raison d’etre of human reproduction, we are entitled to not to have any child we choose.)

Another problem is that this argument ties the anti-[whatever] stance to the utility of the births in question (something that even most Utilitarians – autonomy-loving libertines that they are – would not do). Thus it seems to imply that it is OK to systematically prevent births that are socially disadvantageous – perhaps not in cases of Down Syndrome, or Aspberger Syndrome, or what have you, but in other more severe cases. This is almost invariably not what the “anti-’s” have in mind, and apparently not what Caplan has in mind in raising fears of genetic euthanasia.

The “anti-” argument has got to be made on other grounds. The strongest argument is the pro-autonomy one: that the lives of people with [whatever condition] are just as rich and valuable to them as the lives of people without it; there is no reason to deprive them of life for their own good (that justification virtually never works, since virtually nobody would prefer the alternative for their own good), and you may not deprive someone of life purely for someone else’s good, so they may as well live. (To put that more simply: the lives of people with “disabilities” – however we may conceive that term – are almost always a net positive benefit to them – they do still want to live; thus, the only reason not to let them live would be to benefit someone else, which we normally say we cannot do.) This argument falters when you consider that the lives that are going to be ended are not those of persons with the condition in question, but of embryonic non-persons who have no interests to take into account. Ending the life of an adult person with [whatever condition] who still wants to live would be a grave injustice, but ending the life of an embryo that is not a person, and wants nothing at all because it has no consciousness, is no harm at all, and so is permissible. The response to this argument is that systematically eliminating all births with the chosen condition is tantamount to genocide – to casting the existing generation with that condition adrift by not letting any new members of their “community” arrive – essentially declaring war on people with that condition not by attacking them directly but by genetically cutting them off as a barren community. And, finally, the response to that argument is that there is no obligation on the part of prospective parents to have any particular type of child simply so that others like that child will have a thriving community. (There we will have to let the argument stand for now. It’s a vital topic, but not for this post.)

Whether or not there is a good “anti-” argument against systematic elimination of embryos with a given “disability”, the point is that doing so directly harms no living person. Harms to imaginary future persons, in the sense that they do not come into existence, are of no moment. (An embryo that is aborted “suffers” just as much as one that was never conceived, or one – say, the hypothetical offspring of Benjamin Franklin and Britney Spears – that never could have been conceived. We are not morally obligated to any of these non-persons.) And so I am puzzled to imagine what Caplan – or the many who share his fears – are upset about. The “future genius” argument that Caplan foregrounds is absurd, and the “discrimination” argument makes no sense – not least because, at the early-embryo stage, there is no one there to be discriminated against.

We may well worry about the world we create in seizing domination over our own genetics, but the problems to be feared come not from the fact that certain imaginary people will not come into being. The real problems are the familiar dysutopian scenarios – clone armies, Delta-minus worker slaves, complacent feudal drudges, raving military savages, universal genetic conformism, loss of hybrid vigor – that threaten from attempting to manage a planned genetic economy. These are possibilities to be considered, and avoided by proper planning. (How do you avoid the danger of a clone army? Don’t make one!) But that is something we can do – something that does not depend on diagnostic precognition to prevent us aborting hypothetical geniuses, or equates not having a child with a given condition to killing another person with the same condition.

The FDA has instituted a much-publicized “voluntary” program, involving manufacturers, doctors, and – whether they like it or not – patients, aimed at preventing birth defects resulting from use of Accutae (isotretinoin ) for severe acne.

[A]s of the beginning of this year, the companies that make isotretinoin, together with the Food and Drug Administration, have imposed mandatory prescribing rules. Any woman of childbearing age who is given the drug must meet several requirements. Before starting the medication she must have negative pregnancy tests two months in a row. While taking it, she must either promise in writing to abstain from sex with a man or else use two forms of contraception, one of which must be a highly effective kind like birth control pills or the injectable Depo-Provera. Each month during her treatment (usually five months) she must take a pregnancy test. And she must document every step she takes by logging onto iPledge, a national online database.

The new rules are meant to prevent isotretinoin-related birth defects once and for all. But the rules are so strict, some doctors say, they might discourage or even prevent many patients from using the drug, the only treatment that can erase severe acne. Many dermatologists say the iPledge program is overkill.

“It’s one of the worst things that’s happened to our specialty,” said Dr. Ranella Hirsch, a Boston dermatologist who is the vice president of the American Society of Cosmetic Dermatology & Aesthetic Surgery. “We’re taking a very good drug that is for many people the only real choice out of reasonable access.”

The risk is real: first-trimester fetal isotretinoin exposure often causes a suite of severe birth defects including hydrocephaly, microcephaly, cleft palate, mental retardation, and developmental abnormalities; it often causes spontaneous abortion or infant death. Prior to the “iPledge” registration program, Accutane access was controlled through an aggressive patient-education program that involved repeated pregnancy testing and a sticky label placed on prescriptions to indicate to pharmacists that testing had been done and the patient was not pregnant. The program significantly reduced pregnancy rates among the user cohort, but not to zero. Mama’s Health has a good summary of the best available study on the matter:

Shortly after the Pregnancy Prevention Program began, Roche sponsored a survey of women taking Accutane to assess compliance with the program, and the company encouraged doctors to enroll patients. Run by the Slone Epidemiology Unit at Boston University’s School of Public Health, the survey set out to track pregnancy rates and outcomes, patients’ awareness of risks, and patient and physician behavior.

Of the 500,000 women enrolled in the Slone survey from 1989 to 1998, there have been 958 pregnancies, 834 of which were terminations (either elective, spontaneous or due to ectopic pregnancies), 110 that resulted in live births, and 14 patients that had unknown outcomes. Of the 60 infants with available medical records, eight had congenital abnormalities. Since Accutane’s approval, Roche has received close to 2,000 reports of Accutane-exposed pregnancies, 70 percent of which occurred after the PPP began.

According to FDA, exactly how well the PPP has worked is unclear. Experts say the PPP is a significant program that has prevented many pregnancies and is the first of its kind initiated by a pharmaceutical company. Roche has made extraordinary efforts to educate patients that they must not become pregnant while taking Accutane, says a Roche spokesperson.

At a September 2000 meeting of FDA’s Dermatologic and Ophthalmic Drugs Advisory Committee, a Roche representative reported that from the company’s perspective, pregnancy rates have declined. Amarilys Vega, MD, an FDA medical officer, agreed. However, because use of the product has increased over the years, the actual number of pregnancies occurring while taking Accutane has not declined. One limitation is that the survey is voluntary and only captures about 30 to 40 percent of all patients on Accutane. So there’s no way to know exactly how many pregnancy exposures there have been, according to FDA experts.

The FDA makes the point that compliance rates among women who did not respond to the survey may not be the same as among those who did (meaning you cannot simply extrapolate from the 30 – 40% response rate to get a total figure). This is a good point, but, still, as a ballpark we are looking at something like 3,000 pregnancies, and maybe 50 congenital birth defects, over a 10-year period under the voluntary-compliance regimen. Double those numbers and they’re still small.

For comparison purposes, we can look at Trisomy 13, a (usually) spontaneous chromosomal abnormality with clinical results very similar to those of Accutane teratogenicity. The CDC estimates its prevalence is 1.3 per 10,000 live births, and the annual number of cases is about 530. This prevalence is vastly lower than that of Accutane-linked birth defects (about half of live births), but only because the latter are so commonly aborted. In absolute numbers, the prevalence is something like 100 times as high – yet we almost never hear anything about Trisomy 13. (It’s #17 on the CDC’s list of the 18 most-common sources of birth defects – not all of which are life-threatening.)

Obviously, the two situations are not comparable, because there is no easy way to prevent trisomies, and there is no situation in which it is known that they are particularly likely to occur. Thus, imposing heavy-handed preventive regimens on women “at risk” for that condition is not an option. But it is interesting that a nation-wide, mandatory, sexual-behavior-registration program is being imposed for a potential condition that results in so vanishingly few cases, compared with the natural rates of birth defects that are not even visible as national health problems.

Whenever women’s sexuality enters the health-policy picture, under the current administration and under this FDA, we are forced to consider ulterior motives as likely policy drivers. The utterly bizarre history of OTC emergency-contraceptive approval is all the proof needed. In that light it is suspcicious – in a way it might not be under a more rational and professional regulatory regime – how perfectly a number of hot-button ideological factors line up on this issue:

• A compliance method so absurdly overbearing – mandatory registration on a third-party Web site; multiple and ongoing pregnancy testing; “chastity vows”; reporting of sexual behavior to multiple parties; mandatory compliance by manufacturers, distributors, doctors, patients, and pharmacists – that many experts predict it will simply drive patients away from an effective medication.
• Irrationally suspicious treatment of birth control and credulous belief in “abstinence” (sexually-active patients must use two forms of birth control and undergo extensive “counseling”; women who claim they would never, ever, certainly not have sex are taken at their word).
• Continuous monitoring of women’s pregnancy status and reporting to a widely-accessible Web site.
• Authorized denial of services at any point by anyone in the distribution loop who detects “illicit” sexual status.
• Almost-unprecedented denial of access to effective medication based on women’s reproductive status.
• Staggering imbalance between harm to fetuses prevented (approximately 5-10 cases per year) and women’s healthcare access restricted or denied (50 – 100,000 cases per year).

Speaking somewhat cynically, it’s as if they mixed up the worst aspects of abortion restrictions, “conscience clauses”, Taliban-style denial of women’s healthcare, Margaret Atwood-style sexual slavery, and “for the children” emotionalism into a slurry of rejectionist thinking about women’s sexuality and women’s healthcare. The Web site and multiple stages of sexual monitoring look uncomfortably like a slut registry, while their persistent touching faith in abstinence vows as a guaranteed prevention for pregnancy continues unabated. The total absence of any sense of proportionality – the idea that any level of birth defects, no matter how small, is worth a persistent, painful infection resulting in disfiguring scarring for tens of thousands of women per year – further betrays the ideology that makes such policies seem reasonable: the ideology that holds that no benefit to any number of women is worth any harm to even one fetus.

It is hard not to think that the issue of abortion creeps into this decision as well. Given the almost immeasurably-small level of birth defects recorded during the monitoring program, it is possible to suspect that what this program really aims to prevent is not the 5 birth defects per year but the 250 abortions. It is not clear how many of those were elective, but no doubt a large fraction were. And it is a certainty as well that those incidents were regarded not as adjunct therapies serving to further reduce the incidence of birth defect from Accutane, but as added “tragedies” swelling the death toll from the drug. So the apparent purpose of this policy – as we cannot avoid suspecting – is not simply to prevent women from conceiving fetuses with some probability of birth defects, but rather to prevent women from conceiving fetuses they would then be likely to abort.

Perhaps this is too cynical. Perhaps the crafters of this policy sincerely felt that reducing birth defects from 5 per year to something closer to zero was justification enough to impose an extensive and intrusive monitoring regimen on up to 100,000 women per year – even if likely driving significant numbers of them away from the only drug that can cure their ongoing infections and prevent life-long scarring. Perhaps this was “for the children” thinking in its more benign aspect, and not by way of using children as a weapon against the women who bear them. And perhaps the program will even work – most women will choose to comply, pregnancy rates will drop near zero among Accutane users, and the slut registry will not be breached or misused. But I find it curious that it is so easy, and so readily seized upon as policy, to make the most onerous inroads on women’s health whenever they are found engaged in “non-approved” sex, or whenever a (potential or even imaginary) fetus raises its tiny head.

In a bit of utilitarian logic that seems overdue (though I admit I hadn’t seen it coming), a group of mental health nurses in the UK is debating the introduction of a “harm reduction” strategy to deal with self-mutilating behavior among mental health patients. Specifically, they are talking about providing clean “sharps”, and potentially advice on how to perform “cutting” safely, to patients who cut their skin in response to internal tensions. Some nurses have even been sitting with patients to comfort and monitor them during this procedure.

NURSES want patients who are intent on harming themselves to be provided with clean blades so that they can cut themselves more safely.
They say people determined to harm themselves should be helped to minimise the risk of infection from dirty blades, in the same way as drug addicts are issued with clean needles.

This could include giving the “self-harm” patients sterile blades and clean packets of bandages or ensuring that they keep their own blades clean. Nurses would also give patients advice about which parts of the body it is safer to cut.

The proposal for “safe” self-harm — which is to be debated at the Royal College of Nursing (RCN) Congress in April — is likely to provoke controversy.

At present nurses are expected to stop anyone doing physical harm to themselves and to confiscate any sharp objects ranging from razor blades to broken glass and tin cans.

However, Ian Hulatt, mental health adviser for the RCN, said: “There is a clear comparison with giving clean needles to reduce HIV. We will be debating introducing a similar harm-reduction approach. This may well include the provision of clean dressing packs and it may mean providing clean ‘sharps’.

To some – especially those who oppose harm reduction for drug users, or condom distribution to prevent AIDS or unwanted pregnancy – this may seem a reductio ad absurdum of utilitarian health policy. What could be more antithetical to healthcare ethics than helping patients hurt themselves? At the very least, this is another example of complicity in behavior that should not be condoned in the first place – of focusing on the immediate consequences of the behavior rather than eliminating the harmful behavior itself. (And from that point of view, this may be an even starker example of a misguided policy than needle exchanges or condom distribution. There is a value to safe sexual behavior in itself, beyond merely the good of remaining disease-free, that is promoted by condom usage, and there are those who argue for an abolition of drug laws on the same grounds – that taking drugs is a personal decision that should be supported, not opposed, where it is voluntary. Self-harm, though, is . . . harmful.) Even from a more rational view of healthcare ethics, there can be something startling in this policy: the idea that behavior that is by definition self-destructive should be encouraged as long as it is merely less harmful, especially when the alternative, under current policy, is active intervention to prevent the behavior. It sounds like a policy of advising suicide jumpers to try a lower window. Add in the question of dubious decisionmaking capacity (these patients are, again by definition, mentally troubled to the point of making self-destructive decisions), and the idea of enabling and supporting the behavior in question can seem shocking. (I am a very strong autonomy advocate, but not only did I not see this proposal coming, when I first encountered the story on a conservative blog I assumed it was a parody.)

However, understanding this policy requires understanding the behavior it addresses. “Self-mutilation” is a complex behavior that often has nothing to do with suicidal ideation, or with a true intention to harm oneself as the patient sees it. “Cutting” and other pain-infliction methods (hair-pulling, scratching the skin, piercing, etc.) are often a way of reducing internal tensions or the feeling of losing control of oneself due to psychological pains. This has a sound physiological basis; pain sensations do reduce the felt intensity of competing pain sensations, a fact which is taken advantage of clinically and informally. Dentists use “pressure anaesthesia” (pinching or pushing on the gums) to reduce the pain of needles, and “piercers” – people who pierce their skin either as a demonstration or for S&M purposes – do the same thing. “Cutters” report that their tensions ease and they feel calmer – and feel less need to do other, more extreme things to themselves – when they inflict pain. The wounds cutters inflict are often very superficial – barely breaking the skin, as opposed to truly suicidal cuttings which often go very deep. Viewing cutting only in respect of the physical damage it does to tissue, and not in terms of its psychological importance to the patient, or its calming effects, gives a very distorted perspective. (It’s important not to be too glib about this, though. Many patients making “suicide gestures” inflict superficial wounds, either because they do not truly intend to die or because they don’t know how to go about it or can’t force themselves to do so. Similarly, many “cutters” do inflict more serious wounds, and many are left with lifelong scars. It would be a mistake to say that “cutting” cannot be truly life-threatening, or that superficial injuries do not betray very serious self-destructive impulses. It would be a serious mistake to say that “cutting” and suicide are mutually exclusive impulses. And, most importantly for this blog, I am not a clinician or a mental health expert, and this material should be read with an accordingly skeptical mind.)

Seen this way, it is a mistake to insist that cutting is by definition self-destructive, or “harmful”. For one thing, the actual injuries it involves may be no more severe than those undergone – willingly – by persons receiving tattoos or participating in BDSM play. More importantly, the intent behind the act is very different from an actual intent to harm oneself – to make oneself worse off, or less healthy. The intention of many cutters is to make themselves more healthy by aleviating a pain that is not responsive to ordinary analgesics. To the extent that it succeeds in this way – and is not, in fact, an expression of truly self-destructive desires or a half-hearted attempt at suicide – cutting is a coping strategy – a way of pushing away the tensions and needs that otherwise haunt the patient – and in that sense not so very different from what getting a fix is for an addict. Seen in this light, a harm-reduction strategy towards cutting may be as reasonable as a needle exchange for drug users.

This is not the last word on this policy. The matter of distinguishing cutting which reduces a patient’s psychological symptomatology from that of self-destructive behavior which could exacerbate into truly dangerous acts is of paramount concern. The question of mental capacity is also an important one (though, again, for “cutters” the act in question is not self-destructive or counterproductive, but is in fact a supremely rational – and staggeringly desperate – reaction to conditions). But, assuming these questions of clinical fact can be addressed and managed, the idea of harm reduction for cutting makes sense, however sad and despairing an act cutting itself may seem.

What this issue brings up – as do so many matters of healthcare ethics and policy – is the question of the role of the healthcare professions in general. Predictably, in response to the suggested policy above, a traditionalist view of healthcare provision was held up against it:

However, Ian Hulatt, mental health adviser for the RCN, . . . admitted there would be significant opposition: “Some nurses will not support this because our code of practice says we should not do patients any harm. But this may be less harmful than patients using dirty implements. There are mental health units that already allow the use of sterile implements.”

But this view of healthcare defines provider roles independently of what is actually good for their patients. One can only suggest that “harm reduction” violates a proscription on doing “harm” (as adherents of the dwindling Hippocratic school often do) if one defines “harm” in some absolutist, prescriptivist sense, and not in terms that reflect the patient’s own values. If patients themselves decide where their own interests lie, then effective harm reduction must be the proper policy (assuming no “harm elimination” policy is achievable), even from the point of view of non nocere. The claim that providing safe sharps to people who are going to cut themselves anyway is a “harm” is only defensible if the fact of the behavior is taken as the harm in question, and not the relative magnitude of its consequences. And that kind of absolutist categorical thinking underlies an entire school of healthcare ethics in which the patient, and the patient’s own values, make only fleeting appearances. That, I suggest, is a real harm to be reduced.

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.