Bioethics, healthcare policy, and related issues.
There’s a great post up at Skepchick, discussing a supposed regimen for “natural” transexual procedures for female-to-male transitioning. Debbie Goddard (@DebGod) responded to a question from a writer who was approaching the FTM transition but was uncertain about surgery and hormone therapy, and had heard about a program of exercise and “natural” supplements similar to that used by “natural bodybuilders”. DebGod’s response and the discussion that ensued fascinated me. I encourage people to read it; then I’ll have some comments to make.
What got me onto this is that there’s just so much cool stuff in this post and the comments thread. I don’t have anything to say about the basic question of natural transitioning, but I want to point out several things that come up in the discussion.
First, it’s interesting that this post arose on a skeptic (i.e., atheist, anti-paranormal) site in the first place. Transexuality isn’t inherently an issue for skeptics, but the questioner identified as a skeptic and was apparently feeling vulnerable as both a transexual and a skeptic, so sought out a welcoming community. He found the right place: DebGod happens to be gender-queer, and is knowledgeable about transexuality and a former bodybuilder, and the community of readers was supportive. From some of the comments, it appears that many perceive the skeptical community as not uniformly welcoming for LGBTQ people – something I hadn’t known or expected. This post included some interesting discussion of LGBTQ issues among skeptics, and raises questions that – especially in light of the recent conflict over misogyny among skeptics (notably involving another prominent Skepchick poster) – I hope the skeptical community will take the opportunity to address.
More importantly, DebGod’s response is a model of careful and helpful analysis. She gives her own background, with appropriate disclaimers, then lays out the issues clearly and concisely. She notes red flags with the claims being made (no professional credentials, buzzwords, trademarked terminology, skeptical responses from people directly affected). She then reviews the suggested procedure, notes that it relies heavily on biochemical supplements, comments intelligently on their purity and efficacy, and discusses the vague distinction between “natural” and “non-natural” that the promoters take advantage of. She seeks information from a more knowledgeable source. Shen then concludes by running down all the issues this analysis raises, categorically, giving pros and cons for each and pointing out dangers. This is a really well-done, intelligent, well-argued analysis, at least as good as that commonly seen from Quackwatch or prominent skeptics like PZ Myers.
What I really like about DebGod’s analysis is that she is carefully value-neutral in all of this. Though it’s clear that there is much to be worried about in this suggested regimen, she never takes it on herself to make other people’s decisions for them. Her final statement is a clear and balanced sketch of the relationship between all the competing factors – health, personal goals, available support, and insurance or income – that influence a decision among the many different options for transitioning; she doesn’t declare any of them right or wrong for any individual, but makes it clear that each may be better or worse under different conditions. She includes just a single sentence offering her opinion that the “natural” process is too risky and low-benefit, but clearly identifies it as her own perspective and doesn’t insist that anyone else has to adopt it. She really gets her role as guide and analyst, as opposed to parent, judge, or dictator – something that so many culture-critic blowhards, and even many licensed professionals, can’t accept.
As she notes:
When it comes to gender identity and transsexualism, where you want to go, who you want to be, and how you want to do it is up to you, of course.
– a message that needs to be heard more widely, and not just regarding transexualism.
That leads to another issue that comes up obliquely, but importantly, in the comments. The medical community’s response to transexualism has been mixed, in ways that have generated a lot of resentment in the T/Q community even when the doctors and psychologists thought they were being helpful. For many years, transexuals seeking medical treatment in the US were commonly required to conform to the so-called “Harry Benjamin Standards of Care” (now the “World Professional Association for Transgender Health Standards of Care”), requiring extensive counseling and explicit authorization from multiple psychologists, and a set period of pre-treatment life in the transitioned gender, before professionals would agree to provide the requested treatment. Those standards have been eased but still exist. Many critics have pointed out that this is not only paternalistic but unnecessary – transexual patients have a higher level of success and satisfaction with their treatment than patients of many other conditions, including cosmetic procedures, that do not involve such heavy-handed gatekeeping. The professional societies – starting in the 1950s, when this work was extremely controversial – saw themselves as protecting patients and preventing harmful mistakes, while also going to lengths to provide treatments that more conservative caregivers would have prohibited in the first place. Patients, however, saw it as condescending, offensive, and wasteful of time and money. (Note that in other parts of the world, clinical standards for transexual therapy are much looser or non-existent; there is no known epidemic of regretful genderflippers.)
There are some very interesting comments from “natalie1984″ noting that the sex-reassignment gatekeeping system has been eroded in recent years, and along with it the stereotyped view of what it means to “really” be transexual or gender-dysphoric in the first place. Not only has therapy become more accessible, but what kind of therapy and what therapeutic endpoint the patient seeks have also been thrown open. As she notes: “Now we’re all able to simply work out for ourselves who we are and what we want from transition, and what will make us feel happiest”. She speaks with understanding of why many healthcare professionals are not current on T/Q issues, and simply encourages patients to find caregivers they are comfortable with. There’s also an interesting exchange further down the thread between her and one of the promoters of the natural therapy. She comes across as uncompromising but smart, thoughtful, and understanding.
There’s more, including the politics of gendered pronouns, but even just this adds up to a rich and complex discussion, with intersections between skepticism, healthcare autonomy, gender issues, and, vaguely, perhaps some philosophy-of-science stuff. What this post brings up for me is the deeply connected ways in which such issues always do surface in any similar debates over the proper application of facts to values – that is, the use of science or medicine to achieve chosen goals in human lives, and the conflicts that arise between those who control the science and those whose goals are at stake. It is common in ethics and philosophy of science to emphasize the “fact/value distinction”, but real cases often dredge up facts – and perceived facts – from many aspects of our lives, and competing values that arise from very different lived perspectives.
In this one issue, the skeptical community provides a useful mindset for analyzing clinical claims, but has also been charged with hostility to the LGBTQ community in whose interests those questions are asked. The “natural health” community offers the autonomy and self-direction that many patients want, but also harbors liars and scammers. The doctors who invented the sex-assignment gatekeeping system that so many transexual people hate did so as a way to make it possible for those patients to get care than had never previously been available. It is impossible for anyone to assert an exclusive claim to the moral or epistemological high ground here.
This stuff is hard, and, like so many progressive programs, requires a dedication to working through all the implications of a given position, and to striving to make one’s positions more defensible, more responsive, and more accepting. Every one of these communities – the skeptics, the healthcare professionals, the alternative-health promoters, and to some degree the LGBTQ population as well – have work to do in that way. Some of it has been done, though, and some of it is being done now, over at Skepchick. Good start.
Today’s news is that an amendment to the Republicans’ medical-residency defunding bill, prohibiting the use of any medical-education funding for “training in the provision of abortions”, was passed in the House by an overwhelmingly partisan vote. The event is not of great practical significance: this amendment is very unlikely to emerge from the Senate, and the bill is almost certain to be vetoed anyway. But it marks yet another front in the right wing’s ceaseless war on women’s healthcare, and yet another point-scoring display of how reckless – or simply antagonistic – they are willing to be with women’s lives.
The amendment is odd, though, and uglier even than it seems. It is so vaguely written that it is hard to figure out just how it would work if it were enacted, but its most likely interpretation would be literally deadly. It also extends the odious “conscience clause” for neglect of patients to every health plan, contract facility, professional group, doctor, nurse, or other staffmember at every medical school and teaching hospital in the nation, through a single sentence in this seemingly minor funding provision regarding training for one specific type of care.
The text of the amendment is here (scroll down). Recall this is an add-on to a larger bill; the parent bill seeks to defund all residency-level training in hospitals and medical schools nationwide, to force a new budget fight for training subsidies every year thereafter, rather than allowing block funding with less meddling. That bill by itself is part of the Republican assault on mainstream medicine – this proposed amendment is just a little anti-choice icing on the cake:
(d) Prohibition Against Abortion.–Section 340H of the Public Health Service Act (42 U.S.C. 256h) is amended by adding at the end the following new subsection:
“(k) Prohibition Against Abortion.–
“(1) None of the funds made available pursuant to subsection (g) shall be used to provide any abortion or training in the provision of abortions.
“(2) Paragraph (1) shall not apply to an abortion–
“(A) if the pregnancy is the result of an act of rape or incest; or
“(B) in the case where a woman suffers from a physical disorder, physical injury, or physical illness, that would, as certified by a physician, place the woman in danger of death unless an abortion is performed including a life endangering physical condition caused by or arising from the pregnancy itself.
“(3) None of the funds made available pursuant to subsection (g) may be provided to a qualified teaching health center if such center subjects any institutional or individual health care entity to discrimination on the basis that the health care entity does not provide, pay for, provide coverage of, or refer for abortions.
“(4) In this subsection, the term `health care entity’ includes an individual physician or other health care professional, a hospital, a provider-sponsored organization, a health maintenance organization, a health insurance plan, or any other kind of health care facility, organization, or plan.”
The Meaning – Such As It Is – of the Amendment
The amendment is so badly worded that it’s not clear what it actually does. Section (k)(1) – the central defunding provision – prohibits any residency training money from being “used to provide any abortion or training in the provision of abortion”, but this is far from self-explanatory.
The first part is confused: the funding in question (defined by the parent bill, HR1216, which addresses “funding for graduate medical education in qualified teaching health centers”) is for post-graduate medical education (i.e., medical residency programs or the equivalent), not actual clinical care, and the infamous “Hyde Amendment” prohibits federal money for abortion care in the first place, so the “provide any abortion” provision here would seem to be superfluous at best.
The real issue – and the way the amendment has been packaged – is the denial of funding to train residents in abortion techniques, with an eye toward making abortion unobtainable by flooding the country with surgeons and OB-GYNs who are simply incompetent to provide this standard care. Since almost all residency training takes place in facilities receiving federal subsidies, this provision, if enacted, would mean the coming generations of doctors would receive no training at all in central aspects of women’s healthcare. (It might be possible to obtain such training at the resident’s own expense, but it’s not clear where that would even be possible, since this amendment would restrict almost all centers even capable of providing the training regardless of who paid for it. The only realistic alternative would be to go overseas – again, at the doctor’s own expense – and even that would not necessarily be availing, because it raises licensing questions and is not a practical option for all residents, even the ones who were willing to go to such lengths.) This is not a new tactic on the anti-choice right wing; at one point, Georgetown University’s Medical Center attempted to ban its GYN residents from obtaining abortion training anywhere, even on their own outside the program – and this when such training was still funded. But making it mandatory, inescapable, and nation-wide, is a step never before taken.
But it also seems that much of the intended impact of the amendment could be escapable. Here, the strange wording of the amendment provides a paradoxical loophole. Section (k)(2) allows exceptions for “an abortion . . . ” involving the usual grudging set of special horrors (rape, incest, death*) that some of the right wing are willing to overlook. But, again, notwithstanding the wording of the amendment, there is no funding addressed by this amendment or its parent bill that would “provide an abortion” under such conditions, since it does not provide funding for clinical care in the first place. So these exemptions for “an abortion”, if they do anything at all, must modify the prohibition on “training in the provision of abortions” – that is, Section (k)(2) apparently grants exemptions for federal funding for “training in the provision of an abortion . . .” in pregnancies involving rape, incest, or the threat of death. But of course all techniques used in abortion may be used in cases involving these exempted situations – so presumably federally-funded health centers can provide any kind of appropriate “training in the provision of abortions” for pregnancies involving rape, incest, or the threat of death – after which it’s the doctors’ own concern how they actually put that training to use!
At least, that’s how it reads, in strict logical terms. That may not be how it would be implemented, however. It’s clear from the legislative history of the amendment – the discussion on the floor before it was voted on – that, regardless of the grammatical deficiencies of its author, it was in fact intended to prohibit all training in abortion techniques.† Probably the courts would interpret it that way, even if that’s not what it says. So in practice the impact of the amendment is (a) to prohibit (with few exceptions) all abortions provided using medical-residency training funds – a category which does not exist, and (b) to prohibit all training in all methods of abortion regardless of likely application.
Scope of Ban
The result of all this, as noted, would be to permanently exclude competency in certain standard professional practices from the skill set of all US-trained physicians in all specialties, even including surgery, obstetrics, and gynecology. The skills in question, it should be noted, would almost certainly include, among others, the following methods most commonly used in pregnancy termination:
However, every one of those techniques is used for purposes other than abortion (most commonly, to remove dead tissue left by menstrual troubles, fetal death or an incomplete miscarriage). As noted above, the strict text of the amendment allows training in “abortion” techniques if it is not intended to facilitate abortion, but that’s obviously not what the author hoped for, so presumably it must be interpreted to include any technique that could be used in abortion, regardless of its common application. That would also include:
Impact of Ban
What would it mean if doctors were banned from all training in those techniques, for all purposes? Well, among much other harm, it would mean that any woman would face almost certain death from any of the following conditions, for which one the above techniques is the standard treatment:
It would also mean that women would have no access to standard or best practices under any of the following conditions, among others, because those treatments involve techniques that could be used in abortion:
And of course there’s the whole conspiracy-of-silence-about-birth-control thing (see ‡ below).
In short, this ban – if it were enacted and if it were implemented as intended, and as anticipated by its legislative history – would kill even more women in the US, in coming years, than are currently sacrificed every year from the current lack of abortion providers. We would see a return to death from emergencies in childbirth – even for women not seeking elective abortion – at levels equivalent to that in some Third-World countries (since, given that appropriate care would be banned under this amendment, women facing certain labor-related emergencies would essentially be getting Third-World care even though best-practices-level care could have been provided). Many more would suffer, some greatly, from the lack of access to perfectly ordinary and preferred treatments for conditions having nothing to do with abortion. By making it illegal for physicians in training to obtain the necessary skills to treat a wide range of common gynecological conditions, some of them life-threatening, this amendment simply condemns their future patients to death, permanent disability, and other suffering from conditions for which safe and effective treatments were available, and which are universally practiced in every other advanced nation, but which their US-trained doctors were prohibited from learning.
[NB: I am not a clinician. The information above is common knowledge from widely-available sources. I am confident it is accurate; it is likely incomplete – the full impact of this legislation is likely worse than I have been able to describe. For actual clinical guidance or practical healthcare purposes, be sure to consult a knowledgeable clinician who has a full range of professional skills (i.e., one who was trained at a non-misogynistic healthcare center before this ban was enacted).]
As with so much of Republican “healthcare”, it’s hard to imagine this policy could ever be taken seriously, or enacted in any nation that makes a claim to basic decency. But as so often has been the case in the past, it’s best to be prepared to be surprised by what levels of indecency Republicans are willing to reach.
As I noted, the amendment contains inherent loopholes that its legislative history makes clear were unintentional. It may be possible to circumvent some of its provisions nonetheless, by sequestering training in the relevant techniques to programs ostensibly aimed at other conditions: that is, teach vacuum aspiration as a treatment for dysmenorrhea, teach dilation and extraction as a procedure for removal of a dead fetus after incomplete miscarriage, etc. This could work, but only if the ban were confined to overt training in abortion as such, and not to training in any procedure that could be used for abortion. There is no question how vicious, and how hostile to the lives of women seeking abortion, the supporters of this bill are; it remains to be seen if they are willing to sacrifice innocent breeders, too, in their pursuit of death for rebellious hussies. Virginia Foxx, the sponsor of this amendment, is known for her bizarre and incoherent beliefs; I think it is really likely she just does not understand the implications of her own amendment, and it would not in the end be taken to the extreme of a complete ban on all gynecological surgical methods. Or would it?
At any rate, the stupid and ugly thing is not going to pass. But it is worth considering just how serious its sponsors were, and how far they were willing to go, to kill and punish women who sought control of their reproductive organs, through the medium of their own doctors – how far they were willing to go to make the ignorance that characterizes Republican health and science policy across the board in fact mandatory for those who refuse to adopt their values voluntarily. As in so many cases, denial of knowledge is both the substance of, and a weapon for imposing, the right wing’s values as punishment upon those whose crimes are knowledge and independence.
* Note that only death – not merely unendurable pain, permanent disability, or traumatic stress – is grounds for exemption. And, too, the section on the woman’s health repeats the phrases “physical disorder . . . physical injury . . . etc.” four times, making it clear that there is to be no sympathy extended to women whose traumas are psychological, whether or not life-threatening, because that’s not part of your “physical” health. Apparently the people who are convinced there is such a thing as a soul are not convinced there is such a thing as a mind.
† This raises another issue: the technique for “provision of abortions” in the case of medical abortions – RU486 or similar medications – is simply to conduct an appropriate examination and write a prescription. The “techniques” for doing so are used in the treatment of every condition, and the specialized knowledge involved in using this particular medication is trivial to acquire independently. So, again by the strict logical meaning of the text, either hospitals are prohibited from teaching residents even to write prescriptions – unless they argue that techniques that merely could be, but are not intended to be, applied to abortions prohibited by this amendment are therefore not prohibited in their non-abortion contexts. And that – again, if logical consistency means anything – would authorize all abortion techniques, medical or surgical, for the reasons I explained in the preceding paragraph. But these are Republicans we’re talking about.
‡ And of course the anti-choice nuts characteristically go so far as to define mere fertilization as a “pregnancy”, and I have no doubt that the supporters of this amendment would argue that its provisions apply not merely to the prescription of abortion by medication, but also to post-coital medical contraception such as Plan B. But . . . Plan B and its like are essentially equivalent to nothing more than high doses of ordinary prescription birth control, and in fact ordinary birth control pills can be used for that purpose without a separate prescription. So presumably this amendment would also prohibit either training in prescription of oral contraceptives, or at least mentioning the fact that they can be used for morning-after contraception. So far does the absurdity extend, if you take this policy seriously.
This is an odd story from the ongoing saga of the miners who have been trapped underground in Chile for more than a month now, with still some time expected before their rescue.
A small shaft has been drilled to their location, and they have been supplied with food and water, and other amenities, through the tube; at first they were stressed and suffering, but are now apparently in better health. They are also in communication with the surface by phone and video, and are frequently being interviewed and monitored by a team of psychologists who are trying to help them get through their long confinement. But the management of the mental health portion of the rescue effort seems to have degenerated into a power struggle between the psychologists and the miners, with the doctors imposing their own standards of behavior through petty disciplinary actions, provoking the anger of both the miners’ families and the miners themselves, whom they are ostensibly trying to help. The doctors are supported in this by NASA psychologists who have been called in to consult, due to their experience with crews under isolation and confinement for long periods on space missions, but it’s not clear the NASA people have any reasonable sense of how to handle things either. The linked article, which as usual offers few details and no explanatory rationale, seems to hint that this conflict has been staged by the psychologists in order to give the miners a focus for their tensions and keep them from taking things out on each other – which would be a bold but questionable strategy if true, though it’s impossible to tell from this article what’s really going on. At any event, this seems to be a very strange and fraught situation.
”The honeymoon is over,” explains Alberto Iturra, the lead psychologist in the operation to free 33 men trapped 700 metres deep in San Jose mine. As point man for the psychological health of the trapped men, Mr Iturra is at the receiving end of the rage of relatives of the miners who are upset at the Chilean government’s refusal to deliver letters considered ”psychologically inappropriate”.
The widespread censorship of letters to and from the miners – which the government now claims has ended – acted like a spark to ignite what was already a simmering conflict: family members ever more desperate for their loved ones to be rescued and the government medical team battling to keep the miners psychologically united and working as a group.
”The honeymoon lasted two weeks,” said Dr Jorge Diaz, the lead physician in charge of monitoring and maintaining the health of the 33 men. ”Now the men are starting to demand certain things and we begin to restrict others. We are measuring each other’s strength.”
With their health improving and patience expiring after six weeks underground, the 33 miners are restless. On several occasions, they have refused to talk to psychologists, cancelled a series of meetings with doctors, delayed implementation of vaccinations. The men have few problems, however, making their desires clear: cigarettes and wine.
Over the past 10 days, the Chilean government’s psychological team has ceded to certain demands. Last week, the initial delivery of cigarettes was sent down the 700-metre tube that is essentially a lifeline to the trapped men and widely known as the ”umbilical cord”. . . .
In an effort to dominate the miners, the team of psychologists led by Mr Iturra has instituted a series of prizes and punishments. When the miners behave well, they are given TV and mood music. Other treats – like images of the outside world are being held in reserve, as either a carrot or a stick should the miners become unduly feisty.
In a show of strength, the miners have at times refused to listen to the psychologists, insisting that they are well. ”When that happens, we have to say, ‘OK, you don’t want to speak with psychologists? Perfect. That day you get no TV, there is no music – because we administer these things,”’ said Dr Diaz. ”And if they want magazines? Well, then they have to speak to us. This is a daily arm wrestle.”
After weeks of demands, the miners are now focusing on a few precious requirements – they want daily letters from their families and wine to celebrate Chile’s Independence Day today, particularly noteworthy this year as Chile celebrates its bicentennial.
While NASA experts brought to Chile as advisers have recommended sending the wines and withholding the cigarettes, the Chileans have done the opposite, saying the miners have nearly two kilometres of ventilated tunnels to smoke a cigarette and relax (as opposed to the confinement of space travel) while further noting the average miner consumes large quantities of alcohol. . . .
Despite rising tensions, the medical and psychological team is content, and they have received glowing reviews from the team of NASA psychologists. Furthermore, many of the symptoms now being shown by the miners are typical of group dynamics when people are placed in confined and stressful environments for more than six weeks.
”NASA told us we have to receive the arrows, so that they don’t start shooting the arrows at each other,” said Dr Diaz.
”So we are putting our chests forward – now they can target the doctors and psychologists.”
It seems as if the psychological team has taken it upon themselves to impose their own view of optimal healthy behavior for the miners: no smoking, no alcohol, no psychologically stressful communications. But of course the miners prefer to live as they have chosen to on the surface, whether or not it’s optimal for their physical health – as in fact we all do, under ordinary conditions. Normally, these doctors would have no say in how the miners live; only the fact that they now physically control the miners’ access to the things they want gives them the opportunity to impose their own choices, and they have assumed the authority as experts to do so. But as the doctors themselves acknowledge, it’s apparently not actually dangerous for the miners to smoke or drink underground when they’re just waiting to be rescued and have an adequate air supply, so there appears to be little reason not to give them what they want. The doctors have responded to the miners’ insistence on making their own decisions by imposing punishments, actually withholding things that would be to the benefit of the trapped workers, and essentially behaving like the wardens of an accidental prison.
It’s worth noting that “crew mutinies” have been a frequent feature of NASA space missions – and NASA has generally responded punitively as well (deliberately destroying the careers of a number of astronauts while pretending that everything was OK). There is obviously a complex psychology to being confined in a small space under dangerous conditions (especially, I would think, as the result of accident), and it’s clear that the “experts” know little about it, cannot predict its consequences, and have developed only the most limited and heavy-handed tools for managing it. The authoritative mindset that allows doctors to assume that they have to “manage” other people’s emotional states in the first place encourages experts to demand obedience in even the smallest things, to defend their prerogative to do so by citing a dubious scientific justification, and to enforce their demands with tyranny and retribution. That NASA supports that approach in this case may be grounded on a real basis of experiential knowledge, but their own history suggests they have only limited skills or insights in such matters. (The fact that NASA didn’t appreciate, in this case, that there’s a difference between a space station with a recirculated air supply and a miles-long underground tunnel with unlimited air, or between military-style missions by highly trained crews sworn to obedience operating in technological environments and the rough-and-tumble world of hard-rock mining, also calls their insights into question.)
The suggestion that this is to some degree planned – that the doctors are deliberately antagonizing the miners in order to unify them against the doctors themselves and prevent intra-group tensions – is the most provocative aspect of the situation. If this is true, the seemingly punitive measures the doctors have taken are more understandable, but still require justification. First of all, these kinds of “reverse psychology” power struggles seem more like clever tricks than real psychotherapeutic techniques. I don’t know if there is any research showing that withholding privileges to miners trapped underground is in fact likely to increase their psychological strength, as opposed to, for instance, increasing their stress and causing them to break down, but unless there is a real reason to think this sort of thing actually works, it amounts to nothing more than a risky and cruel experimental exercise by the doctors. And even if there is some reason to think it could help, it’s also not obvious why we can’t just trust the miners – people who depend on each other while risking their lives in that mine every day – to take care of themselves.
It’s possible that this incident is being handled with sophistication and professional dedication, by doctors who have boldly made themselves the instruments of their own “patients'” salvation. But it’s also possible – and more than plausible – that this situation has gone out of control due to the self-aggrandizing and scientifically ungrounded lust for power of petty tyrants who resent being thwarted by those they claim authority over. What seems certain is that the miners themselves know their own wants and needs, and those wants are not unreasonable; that it is simply assumed to be out of the question to let them manage their own health, physical and mental, under conditions in which they are dependent on others for the means to do so, is as telling as whatever the actual outcome of this situation may be.
There’s a lot of blogging today over a sensationalistic post at NRO by Shannen Coffin, a former Bush lawyer who was responsible for anti-choice litigation surrounding the so-called “partial birth” abortion ban. She He notes a 1996 memo from the files of the Clinton administration, predating Clinton’s veto of the anti-choice bill, in which Elena Kagan, then a Clinton legal advisor, recommended a change in language in the policy statement eventually issued by the American College of Gynecologists supporting their opposition to the bill. They originally stated that “in the vast majority of cases, selection of the partial birth procedure is not necessary to avert serious adverse consequences to a woman’s health”, and that they “could identify no circumstances under which intact D&X would be the only option to save the life or preserve the health of the woman”, but – on Kagan’s recommendation – clarified that by also noting that it “may be the best or most appropriate procedure in a particular circumstance to save the life or preserve the health of a woman”. (Note that ACOG explicitly reaffirmed this policy, using the same language, at least three more times, in 1997, 2000, and 2003). That policy statement was later referred to by at least one federal judge, in litigation on the constitutionality of the ban later enacted by Bush.
Coffin’s conclusions are that this is a “distortion of science”, that “language purporting to be the judgment of an independent body of medical experts devoted to the care and treatment of pregnant women and their children was, in the end, nothing more than the political scrawling of a White House appointee”, and that “Miss [sic] Kagan’s decision to override a scientific finding with her own calculated distortion in order to protect access to the most despicable of abortion procedures seriously twisted the judicial process” – naturally she he rolls this up into the ongoing Kagan Supreme Court confirmation hearings as well. The right-wing idiotocracy is all a-Twitter, too, natch: Powerline declares this is a “smoking gun” and “shocking”; Riehl calls it “misrepresenting science” and “dishonest”; the risible Betsy, of Betsy’s Page, reads this and concludes that “there was a doctors’ opinion that said that partial birth abortion was not necessary and she, with no medical background at all, drafted a statement that said the exact opposite”. Yuval Levin, the severely bioethics-challenged former staff manager of Bush’s Presidential Council on Bioethics, declares this to be a “war on science”, “astonishing”, and “easily the most serious and flagrant violation of the boundary between scientific expertise and politics I have ever encountered”.
This sort of nonsense is particularly astounding from Levin, who was a central player in the workings of an “ethics” commission that remains a watchword for right-wing distortion and duplicity, whose major policy statements drew dissenting opinions from its own most scientifically-qualified members, and which then censored, and later fired, those same members. Levin – a political scientist and former Bush White House policy staffmember who has spent his entire career crafting right-wing bioethics policy – also castigates Kagan for her lack of medical expertise and her involvement in healthcare policymaking. You really just can’t make this stuff up.
It’s especially disingenuous for people like Levin and Coffin – political hacks whose entire career consists of trying to influence policy to fit their ideological leanings, from both inside and outside the government – to claim that there’s something untoward in political policy staff conferring with the policy-making boards of professional organizations to shape language on statements issued in clearly political and legal contexts. That sort of thing goes on all the time, and it’s appropriate for such bodies of experts to confer with political authorities to ensure that their statements are effectively written and focused. It would be inappropriate for them to turn themselves over to the political authorities as tools of policy, and to issue statements they did not believe were true, but it’s not inappropriate to get guidance on language and emphasis in order to convey an effective message. (As Coffin herself notes, ACOG already opposed the anti-choice bill. Obviously they would want their policy statement to reflect the reasons why.) To suggest that a policy expert drafting language for a policy statement endorsed by a professional body is somehow scandalous – let alone unusual – is simply stupid. And to suggest, as Coffin and others have recklessly done, that ACOG is somehow compromised or tarnished in doing so, is not merely stupid and dishonest, but libelous.
Aside from the completely manufactured, and fictional, scandal that the right-wing noise machine is busily whipping up over this, there is also the simple fact that the language Kagan suggested does not replace or contradict the language previously present. The statement that there are “no circumstances under which intact D&X would be the only option” is entirely compatible with the claim that it “may be the best or most appropriate procedure in a particular circumstance to save the life or preserve the health of a woman” (emphases added). It’s simple, really: the fact that something is never the only option in no way means that it is a bad option; the revised language not only implicitly acknowledges this but clarifies for the dim-witted (i.e., conservatives) the even more important point that it is in fact sometimes the best option. (Obviously, Intact D&X is never the only option: you can always perform an unnecessary Cesearean section or force the woman to deliver a fetus that may be dying and may possibly kill her – options that are much prefereable, for conservatives, than allowing a woman to choose the safest option on her own authority. ACOG’s point, which Kagan nudged them towards, is that there are often better options – and that women should have the right to choose them.)
The fight over Intact D&X was particularly nasty because it encapsulates so much of right-wing misogyny, so clearly: it was not a ban on abortion, and it was not a ban on late-term abortions; in fact, it did not ban any abortions under any circumstances. It was only and entirely a ban on one particular procedure for performing abortions. It banned the procedure that was preferable in specific circumstances – leaving abortions entirely legal under those circumstances but forcing women to submit to a procedure that was less safe and more debilitating for them. It was straightforwardly an attempt to punish women by making them accept higher risks and a lower standard of care, as the price for choosing a procedure the right wing disapproved. And ACOG’s policy statement implicitly recognized this: it notes that there are always alternatives to the ID&X procedure, but that in some circumstances those alternatives are worse, and ID&X is, in those circumstances, the best or most appropriate procedure. Kagan’s contribution – appropriate, useful, and highly pro-woman – was to encourage them to clarify that distinction. (Note, again, that ACOG explicitly reiterated this policy, and the important distinction it makes, three times after Kagan supposedly “overrode” their scientific judgment in the matter by forcing them to include language that does not contradict that judgment.)
Raising this issue is simply another example of the right-wing’s reflexive insanity over sex and abortion, coupled with their inherent inability to read and comprehend basic logical statements. (Note “Betsy”‘s analysis: “there was a doctors’ opinion that said that partial birth abortion was not necessary [no, there simply wasn’t] and . . . [Kagan] drafted a statement that said the exact opposite” [no, she didn’t].) Honestly, the relationship between “not the only” and “sometimes the best” is really not that tricky. It’s too tricky, of course, for the average right-winger, and for people like Coffin and Levin, whose deficiencies were all too apparent back when they were writing policy for Bush, but to people of normal intelligence and reading comprehension, this entire farce is an obviously groundless, and all-too-familiar, political hackery.
The right wing is also up in arms over this because, as Scott Lemieux at Lawyers, Guns, & Money notes:
the only point of this feeble “smoking gun” is to allow Senate Republicans to mention the phrase “partial birth abortion” a lot [and] I should note once again that for reasons Judge Posner and Justice Stevens have explained the entire issue is a farce. The distinction between D&X abortions and other abortion procedures is wholly arbitrary, and for people who have supported irrational laws making such a distinction to pretend to care about rigorous medical science is nothing but comedy of the lowest form.
Mahablog was fast out of the blocks on this, in a post I wish I’d written:
if you actually understand the issue in question — which leaves out righties, naturally — you’d know there is no “there” there. . . . Somehow, in the fevered imagination of righties, a professional organization representing 90 percent of U.S. board-certified obstetrician-gynecologists was duped by Kagan into telling a lie, or something, and because this wording came from Kagan it must not actually reflect the views of ACOG. . . . no scientific finding was “overridden,” just clarified, and ACOG must have agreed with the statement or they wouldn’t have continued to repeat it in their position papers ever after.
Lemieux gets the content issue exactly right:
There’s no contradiction between the two drafts, because D&X abortions are, in fact, not medically necessary in a majority of cases. But this fact doesn’t mean that they are never medically necessary, and indeed the original statement implies that there are cases where D&X abortions are necessary or preferable for a protecting a woman’s health. Adding a statement to clarify what was implicit in the first draft doesn’t “distort” anything, and of course if ACOG didn’t think the statement was accurate Kagan had no power to get them to change it. There’s nothing here.
UPDATE: Corrected pronouns referring to Coffin; he’s a “he”, not a “she”. My apologies to Coffin for the mistake.
UPDATE: Another right-wing website breathlessly announces that Kagan “pressured a second group” on its wording of its pro-choice policy. That group was the AMA. Their claim: “Kagan discussed with other Clinton administration officials whether the AMA could reverse its policy saying there is not an identified situation in which partial-birth abortion is the only appropriate method of abortion. The AMA also noted ethical concerns with partial-birth abortions and said that it should not be used unless it is absolutely necessary.” Note that this repeats exactly the same mistake all the other commentators made about the first memo: the two positions described are not contradictory, and there is no “reversal” in evidence! And Kagan’s particular crime: she wrote an e-mail saying “We agreed to do a bit of thinking about whether we (in truth, HHS) could contribute to that effort . . . . Chuck and I are meeting with the AG on Tuesday; Donna offered to send over some doctors this week”. They don’t even identify who the e-mail was sent to (obviously it was internal), or whether any such meeting ever took place, let alone had any effect. (Apparently the AMA does the bidding of any government staff lawyer who offers to “contribute” to their policy development.) Truly, the stupid knows no bounds with these people.
The Huffington Post today breaks an original story on a long-running scandal at Columbia University Hospital, in New York, regarding lack of informed consent on a risky blood-volume-expander study. Heart-surgery patients were recruited into a study involving a new formulation of a volume expander that had been known to cause severe bleeding in its existing form; minimal information was provided in the consent form, some patients did not speak English, some were recruited in the ER under stressful circumstances, and the hospital IRB apparently did not adequately review the existing literature indicating the level of risk potentially involved. (Frustratingly, the story does not say what stage this experiment was conducted at, but it appears to have been a Phase I trial.)
At least two patients in the study died shortly after receiving the fluid and more than two dozen others required transfusions, according to documents submitted to the federal government by the hospital and obtained by the Huffington Post Investigative Fund.
There were attempts to rein in the problem as it developed:
In November 2000, two Columbia anesthesiologists – Marc Dickstein and Mark Heath- sought out the head of the institutional review board, Paul Papagni, a lawyer. They told Papagni that they had been in the operating room when a number of patients had hemorrhaged. They feared the study’s design virtually guaranteed that there would be more who would suffer hemorrhaging
However, their objections were derailed by internal politics. Columbia did later act decisively to crack down on the lead investigator, Dr. Elliott Bennett-Guerrero, and report the breaches of protocol to the HHS, but they also downplayed the severity of the consequences, in part by reporting only a narrow range of outcomes from selected patients, not including the most severe adverse outcome, the bleeding that was the most important known side effect. The hospital also ignored advice from the HHS that it contact patients from the study and apprise them of the truth. Dr. Bennett-Guerrero has now been dismissed from the hospital (he landed in a Directorship and medical-school professorship at Duke – guess they’re OK with all this). Columbia has now been ordered by HHS to contact its former patients.
So, all in all, a serious problem plagued by misbehavior at every level, and an apparent partial coverup.
That’s all very worrisome, but it is the investigator’s attempted defense that particularly caught my attention:
Bennett-Guerrero . . . said in e-mails: “It is hard to imagine that an unbiased expert in cardiac surgery clinical trials could conclude that subjects were harmed in this study, since with only 50 patients per group the study was not designed or powered to prove any differences in major complications including death.”
What he’s saying is that because the sample size was so small, the statistical error in the results is necessarily mathematically too large to be able to show that the deaths or other events that resulted are clearly more numerous than would be expected by chance in such a group of patients.
There are a couple of real problems with this.
First, with a sample size of 50 and, as the article notes, varying dosages of the expander given, up to “three times the level recommended by the manufacturers”, this appears to have been a Phase I Ascending Dose trial. Phase I trials are conducted expressly for the purpose of monitoring safety and adverse side effects of the experimental treatment – they are intended to weed out unsafe treatments before they are tried on large groups of patients. In such trials, safety monitoring is paramount; the first sign of harm to patients should bring the trial to a halt. It’s true that such trial sizes are often too small for statistical significance, but the whole point is to gain confidence before exposing a larger sample size – so empirical monitoring is vital. In this trial, two patients died and numerous others suffered serious hemorrhaging – severe-enough outcomes that experienced clinicians complained directly to the IRB – but the lead investigator never reported a problem or stopped the trial.
(It is possible this was a Phase II or combined Phase I/II trial – though again the facts still seem to suggest Phase I. But if so, the sample size should have been large enough to be likely to return statistically significant results. The trial would be worthless without them.)
Another concern is that no early-Phase trial is supposed to be conducted on patients receiving conventional therapy or in lieu of conventional therapy, where such therapy exists. They are conducted on healthy volunteers. Partly this is to ensure that participation is truly voluntary (i.e., that patients are not being enticed into trials because they see it as a requirement for receiving other therapy), partly precisely to avoid this problem of contaminating apparent adverse consequences of the experiment with the patients’ underlying pathologies.
So it is difficult to see how this trial could have been appropriately designed, aside from the question of informed consent. Either it was a safety trial conducted on patients whose health was already compromised to the point that adverse effects could not be identified as the results of the experimental medication, or it was a dosage-efficacy trial conducted on a sample size too small to provide reliable results, either positive or negative. And in either case, clinical judgment seems to have been dispensed with as patients died but – because of the built-in lack of confirmatory mathematics – no suspicion was entertained about a possible link to the experiment they were participating in.
That raises questions of the investigator’s intent. At this point, I want to step away from this particular incident, and make it clear I am not making insinuations about Dr. Bennett-Guerrero or others from the Columbia trial. Clearly things went badly there but I don’t know what was going through his mind or what his intentions were. I want to use this situation to illustrate ways in which clinical trial design can be (again, I am saying nothing about this particular case) manipulated to evade ethical protections for subjects.
If a trial is deliberately designed with a sample size too small to return significant results, then by definition no negative results can ever be discerned (nor can any positive results, either, of course). At the Phase I level, where harm is the only reported result, lack of positive results is not a problem, but the impossibility of negative results means that the candidate drug will automatically pass the screening. (Since you can’t find any statistically significant negative results, there will be no statistically significant negative results to report, thus the drug can never be proven to have failed the test. And since, at Phase I, “not failing” is a good-enough result to justify further research, the lack of a robust experimental design can, paradoxically, be a very useful feature.) With a lax IRB focusing only on the mechanics of the informed consent procedure, and not the possible pathways for harm or the mathematical intricacies of the results testing, one can easily get permission to conduct a “drug test” that no drug can possibly fail.
Doing so, of course, requires that you suspend judgment as to the empirical/clinical course demonstrated by the subjects. With no mathematical test for success/failure, an ethical researcher must rely on careful clinical monitoring to detect problems with individual patients or the trial as a whole. Starting with healthy subjects makes such problems obvious, since they aren’t supposed to die at all, but conducting the trial on subjects already sick (or, in fact, pulled directly out of the ER into heart surgery) creates a ready explanation why some of them may die, if in fact they do. So, again, there is an incentive to conduct the trial in what would otherwise be a scientifically invalid manner, essentially building in negative outcomes from the beginning (if the patients already have life-threatening illnesses, you’re going to get some bad outcomes no matter what) as a screen for the negative outcomes that may arise from the experimental procedure. This makes it difficult to honestly answer the question whether the procedure harmed the subjects, but makes it easy to argue that it did not provably harm them.
Thus, for an unscrupulous researcher (and again, this part of the discussion is hypothetical; it is not aimed at a particular individual), it may be possible to design a trial that cannot deliver honest and reliable results, but which also cannot fail to provide the preferred result from the point of view of a drug manufacturer or funding source. Doing so requires conducting a trial that is both scientifically non-decisive by intention and which lacks the ability to identify clear harms to subjects. It may also require deliberately enticing patients into the trial for whom better and safer therapies are available, precisely to use their pathologies as a ready excuse for adverse clinical outcomes which the trial may produce in them. And, it necessarily requires vacating the professional obligation to use vigilance and judgment to monitor and protect patients in all circumstances, and especially the experimental environment – and to instead rationalize patients’ outcomes away in order to avoid public knowledge, and possibly self-knowledge, of the harms inflicted upon them.
Convenient rationalizations are not an acceptable mindset for those who take vulnerable others into their care. The fact that a trial design cannot determine whether its subjects have been harmed is not an acceptable exculpation of those whose obligation was to watch for, detect, and ameliorate such harms. It is a reason why such trials must not be conducted in the first place.
Yuval Levin was a staff manager of the Bush-era “President’s Council on Bioethics”, a body widely derided for its almost comically right-wing leanings and gross intellectual malfeasance. Today he steps in it trying to say something all clever and sophisticated about the new authorization for stem-cell research. I got as far as the second paragraph before the crankery blew me away:
tgirsch of Lean Left (and my own blogfather!) writes:
I’m interested in the issues surrounding animal testing. I’m certainly not a member of the PETA crowd or anything, but at the same time, I’d certainly think we should keep such testing to a minimum, using it only where it’s necessary, useful, and relevant. But I honestly don’t know what all the issues are.
But that can take many forms, one of which is mocking, in appropriately childish fashion, PETA’s own tactic for pressuring corporate chicken-torturers [sic]. They have a Web sign-generator site in which they encourage people to post comments about Kentucky Fried Chicken’s practice of, as they put it “tortur[ing] chickens for profit”. Whatever the hell that’s about, it interests me far less than the fact that PETA, as a group, is offensive and abusive to real people, whom I care about far more than the animal fetish-objects that are their sole obsession. So if we’re going to make little signs about cruelty and inappropriate moral priorities, well, let’s get our inappropriate priorities straight, first:
I have posted elsewhere on my reaction to Obama’s speech on race, and conservative reactions to it. But yesterday’s column by Michael Gerson of the Washington Post moves me to comment here specifically on the provocative remarks about AIDS that have been quoted in this controversy, and their implications for the larger questions that must be faced by this country.
As most people will be aware, the right wing has been Swift-boating Barack Obama for the past few weeks over controversial statements made at various times over several decades by the pastor of the black-identified
Baptist church Obama attends in Chicago. Yeserday Obama responded with a speech on the history and role of race and racial discrimination in America – a speech that will stand within the highest ranks of American political oratory, and, I am convinced, be seen in the future as the watershed moment in race relations in this country (certainly so if Obama wins the presidency; likely so even if he does not). There is almost nothing in the speech about healthcare, and only a little about the particular statements of the Rev. Jeremiah Wright that the right wing has picked out to whip up into controversy. Rightly, Obama placed the entire controversy in the larger context of racial history; many conservative commentators, angry at seeing their manufactured controversy dismissed in favor of more important and more substantive issues, responded with criticisms that Obama did not explicitly repudiate Wright and specific statements he had made, as they had demanded. Michael Gerson, in particular, focuses on Wright’s endorsement of the far-fetched conspiracy theory about AIDS that has been circulating in the black community.
Obama’s excellent and important speech on race in America did little to address his strange tolerance for the anti-Americanism of his spiritual mentor.
Take an issue that Obama did not specifically confront yesterday. In a 2003 sermon, Wright claimed, “The government lied about inventing the HIV virus as a means of genocide against people of color.”
This accusation does not make Wright, as Obama would have it, an “occasionally fierce critic of American domestic and foreign policy.” It makes Wright a dangerous man. He has casually accused America of one of the most monstrous crimes in history, perpetrated by a conspiracy of medical Mengeles. If Wright believes what he said, he should urge the overthrow of the U.S. government, which he views as guilty of unspeakable evil. If I believed Wright were correct, I would join him in that cause.
But Wright’s accusation is batty, reflecting a sputtering, incoherent hatred for America. And his pastoral teaching may put lives at risk because the virus that causes AIDS spreads more readily in an atmosphere of denial, quack science and conspiracy theories.
Obama’s speech implied that these toxic views are somehow parallel to the stereotyping of black men by Obama’s grandmother, which Obama said made him “cringe” — both are the foibles of family. But while Grandma may have had some issues to work through, Wright is accusing the American government of trying to kill every member of a race. There is a difference.
Gerson regards holding such an opinion as beyond the pale – and anyone who would believe such things as deranged. (“This accusation . . . makes Wright a dangerous man. . . . Wright’s accusation is batty, reflecting a sputtering, incoherent hatred for America . . . .”) Gerson is obviously grossly ignorant of the history and substance of these rumors, and the historical context in which they arise. And – like other conservatives dismissive of blacks’ reactions to America’s racial history – he seems to have no sense of what that context means to the people it most closely affects.
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.
I read Chuck Palahniuk’s latest novel, Rant: an Oral Biography of Buster Casey, on the strength of a description of its plot. I thought it might raise some interesting bioethical issues. I suppose it does. Mostly it makes me want to take a shower.
Honestly, I have no idea what to think about this business, but . . . here goes:
Rant is a pseudo oral history of the life and exploits of the title character, Buster “Rant” Casey. Palahniuk delivers over 300 pages of short-paragraph-length observations from peripheral characters describing their interactions with him from overlapping and mismatching perspectives. (The book reads quickly because, given the large amount of white space between the “recollections”, it’s probably closer to 250 pages of real text.) We’re supposed to reconstruct the events described on the basis of which stories we believe. When you solve the puzzle, you get a picture of a dysfunctional and paranoid society suspiciously like our own, in which the government has vacated all civil liberties, imposed lifetime detention without trial for undesirable elements, and sequestered half the population in a dark underworld in which they are doomed to menial, marginal existences, receive a grudging minimum of social services, and can be shot on sight for being caught in the wrong place with the wrong paperwork; the justification for all this is . . . (wait for it) . . . the security of the nation, in the face of an existential threat from an invisible but omnipresent enemy. Young people respond to this with desperate nihilism, engrossing themselves in bizarre and self-destructive practices, as well as drugs, mindless sex, and violence. Behind the scenes are shadowy conspiracies enacted by powerful individuals who maintain the danger and the resulting oppression for their own interests: corporate, political, or religious.
Palahniuk’s take on this otherwise none-too-fictional theme is that the danger in question is not terrorists or traitors, or weapons of mass destruction, but biology. The world is driven to the brink of collapse by an unstoppable epidemic of rabies, passed mouth-to-mouth through close, casual contact, through sex between unknowing partners, and sometimes by those who deliberately seek infection as an act of rebellion. Rant Casey is the source of the infection, and of much else that goes on in this strained and tortured world.
“Wendi Aarons” contributes an open letter to the McSweeney’s collection:
AN OPEN LETTER TO
MR. JAMES THATCHER,
PROCTER & GAMBLE.
February 6, 2007
Dear Mr. Thatcher,
I have been a loyal user of your Always maxi pads for over 20 years, and I appreciate many of their features. Why, without the LeakGuard Core™ or Dri-Weave™ absorbency, I’d probably never go horseback riding or salsa dancing, and I’d certainly steer clear of running up and down the beach in tight, white shorts. But my favorite feature has to be your revolutionary Flexi-Wings. Kudos on being the only company smart enough to realize how crucial it is that maxi pads be aerodynamic. I can’t tell you how safe and secure I feel each month knowing there’s a little F-16 in my pants. . .
Have you ever had a menstrual period, Mr. Thatcher? Ever suffered from “the curse”? I’m guessing you haven’t. . . .
Last month, while in the throes of cramping so painful I wanted to reach inside my body and yank out my uterus, I opened an Always maxi pad, and there, printed on the adhesive backing, were these words: “Have a Happy Period.”
Are you fucking kidding me? . . .
Today is International Women’s Day, and for that reason also Blog Against Sexism Day. I want to use the opportunity to take notice of the degree to which sexism is the root of many healthcare ethics issues affecting women, or, to put that another way, how much of women’s health issues arise from or are shaped by sexism and gender oppression.
[NB: I began this review just after the movie came out, almost 15 months ago, and never finished it. Finally, sitting around this weekend, sick and procrastinating, I decided to get it off the books. Here it is, for whoever’s still interested.]
The 2005 techno-thriller The Island hides a ham-handed anti-biotech message amidst its helicopters, gun battles, and explosions of various kinds. It trots out some of the standard “clone army” cliches, but goes beyond this, in places literally taking its dialog directly from the religious-right’s anti-science talking points. It fills a certain niche in the long line of biotech-nightmare morality plays, but with a particularly preachy, and notably slanted, take.
DB, of the eponymous “Medical Rants”, makes a good point about rare diseases:
The problem with Lemierre’s Disease is that it represents a “long tail” disease. Most sore throats are viral or due to streptococcal disease. At least we thought that until recently. Evidence from 2005 in two articles suggests that the organism thought responsible for most Lemierre’s Disease – Fusobacterium necrophorum – may cause as much as 10% of pharyngitis. . . .
For the past 30 years, the infectious disease community has worked to decrease the use of unnecessary antibiotics. They have assumed that group A beta hemolytic streptococcal infection is the only pharyngitis cause which needs “necessary antibiotics”. They have assumed that group C and group G streptococci do not need antibiotics. They have excluded the possibility of unknown bacterial infections. Now it appears that Fusobacterium necrophorum may indeed be an “unknown bacterial cause” of pharyngitis.
What can we do about the Long Tail?
Right-wingers have been beside themselves over a small cluster of deaths from toxic-shock-like syndrome, caused by infection by certain specific microorganisms, in patients who had obtained medical abortions using RU-486 or a similar preparation. Specifically, there have been 4 such deaths from 2003 – 2005, plus one previously; the most recent 4 all involved women in California who had been given an “off-label” vaginal suppository for
Mifepristone Misoprostol (one of the two drugs used in the most-common medical abortion procedure), as opposed to taking it orally. These similarities prompted concern among health officials; the American College of Gynecology, which had endorsed the off-label usage, convened a study panel on the issue, and Planned Parenthood stopped using the vaginal-delivery method (which is otherwise more comfortable, easier, and more effective than oral delivery). The anti-choice contingent, however, of course began trumpeting the incidents as “proof” that all medical abortion was “unsafe”.
This “proof” suffers somewhat from certain facts: (a) no clear cause of the toxic syndrome in these cases has ever been determined; (b) the medication has been used safely, orally and vaginally, by over half a million women, as compared with only 5 deaths; (c) the death rate for medical abortion – as for every other form of early- to mid-term therapeutic abortion – is lower than that for childbirth, making abortion in general, and RU-486 in particular, the best choice for women from a safety perspective. Now, the results of ACOG’s review of the situation show that this safety differential favors RU-486 even more than was previously known.
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.
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.
From Frank Rich’s column yesterday:
That the administration’s stem-cell policy is a political fiasco for its proponents is evident from a single fact: Bill Frist, the most craven politician in Washington, ditched the president. In past pandering to his party’s far-right fringe, Mr. Frist, who calls himself a doctor, misdiagnosed the comatose Terri Schiavo’s condition after watching her on videotape and, in an interview with ABC’s George Stephanopoulos, refused to dispute an abstinence program’s canard that tears and sweat could transmit AIDS. If Senator Frist is belatedly standing up for stem-cell research, you can bet he’s read some eye-popping polls. His ignorance about H.I.V. notwithstanding, he also knows that the facts about stem cells are not on Mr. Bush’s side.
Hat tip: Guerrillawomen.
There’s apparently a bit of a dust-up brewing among vegetarians over the possibility of “cultured meat” – the lab-grown muscle tissue slabs that generations of sci-fi writers have assured us we’ll all be chomping in the near, sterile and tasteless, future. Such products are now nearing marketability, but the super-veggies and the mere-veggies can’t agree on whether they’re a green and ethical end-run around farmed animal flesh, or an unholy combination of Matrix-style technoslavery and the horror that is ham sandwiches (I’m not making this up).
What’s interesting to me about the debate is that it mirrors so precisely – down to the same buzzwords and some of the same quotes – the liberal/conservative debate over biotechnology and human enhancement. Intriguingly, in this case some of the more radical vegetarians are taking the position of the most conservative bioethicists. But there is also a pro-technology position that takes very much the same attitude toward engineered meat products that most bioethicists do to stem cell research or body enhancement, and brings in people from across the contentious spectrum of animal-rights advocates.
I find that heartening. It also provides a fascinating look at the ways certain divisions between attitudes and values can play out across relatively small, as well as grand-scale, issues of biotechnological impact.
Brooklynite has been all up in my shit and stuff over the naturalistic fallacy, particularly my claim that it characterizes Orthodox Jewish arguments over how the law of Jewish identity by matrilineal descent should be understood in light of donor-egg technologies such as IVF or surrogate pregnancy. I perceived that attempting to resolve that question by reference to biological facts – as it seemed to me some Orthodox scholars are doing – is a case of the naturalistic fallacy, to which Brooklynite responds:
I disagree. To say that the original Talmudic distinctions are arbitrary does not imply that they are therefore no longer binding, any more than a demonstration that a secular law relies on an arbitrary distinction necessarily renders that law invalid. One may reject the original basis for a ruling and still argue that the ruling must be followed.
Think of it as religious stare decisis.
This prompted me to think about legal stare decisis, and what could be called “the anti-naturalistic fallacy”. I’ve been increasingly frustrated by attempts to create a legal standing for unborn fetuses that they have never previously had, and which fly in the face of both a reasonable understanding of moral personhood and traditional jurisprudence about standing before the law. These are certainly arbitrary category assignments, ones that rest on a refusal to take biological facts into account. Are they legally invalid for that reason?
Much has been made of the government’s recent decree that all fertile women are to conduct themselves, and be treated medically, as “pre-pregnant” at all times:
New federal guidelines ask all females capable of conceiving a baby to treat themselves — and to be treated by the health care system — as pre-pregnant, regardless of whether they plan to get pregnant anytime soon.
Among other things, this means all women between first menstrual period and menopause should take folic acid supplements, refrain from smoking, maintain a healthy weight and keep chronic conditions such as asthma and diabetes under control.
While most of these recommendations are well known to women who are pregnant or seeking to get pregnant, experts say it’s important that women follow this advice throughout their reproductive lives, because about half of pregnancies are unplanned and so much damage can be done to a fetus between conception and the time the pregnancy is confirmed.
The recommendations aim to “increase public awareness of the importance of preconception health” and emphasize the “importance of managing risk factors prior to pregnancy” . . . .
However, part of the discussion has been over whether the Washington Post (quoted above) misread the CDC report on the issue, and made the whole thing sound more ominous than it should. The reliable and insightful Amanda at Pandagon thinks they not merely misread it, but re-wrote it to incorporate an anti-woman spin. As for the original report, the similarly admirable Ezra Klein thinks that “While the phrasing of treating women as ‘pre-conception’ was deeply discomfiting, the actual medical advice and data offered was all sound.”
I largely agree with both Amanda and Ezra, and so stayed out of the issue when it first arose. But I do have a few things to say about it, and so, prompted by a flattering request from Cara at Reproductive Rights Blog, I’ll add my two cents below the jump.
The LA Times reports that 20% of licensed heart, lung, or liver transplant centers in the US do not meet federal guidelines, and that they show higher-than-average death rates. This is a very serious matter, but I think there is reason to suspect that the paper is misinterpreting or over-reacting to the data.
Roman Catholic Cardinal Alfonso Trujillo has announced that anyone who participates in research that involves the destruction of an embryo – specifically, stem-cell researchers – is liable to excommunication from the Catholic church. This is apparently an expansion of existing Catholic doctrine regarding abortion providers. (Trujillo, you may recall, is the clown who released a lengthy report, quickly demonstrated to be scientifically false in almost every respect, concluding that condoms do not help prevent AIDS.)How much impact the excommunication policy will have remains to be seen. Trujillo’s justification for it, however, is more worrisome.
The “Vital Signs Blog” earns the just-established “Stegosaurus of the Week” award with this post noting that the Mayo Clinic Web site explains (in response to a reader’s question) that there is no scientifiically verifiable link between abortion and risk of later breast cancer. This perpetual fantasy being a mainstay of right-wing propaganda, Vital Signs is concerned, weighs the issues . . . and concludes that the Mayo Clinic is wrong. Because, after all, what do they know about medicine or anything?
Am[az/us]ingly, they pounce on the Clinic’s citation of the definitive study of the issue by the National Cancer Insitute (hacks! – like they’re some sort of experts on cancer!), on the grounds that “the organization has come under fire as politically charged”. (I.e., rightwingers complain that the NCI doesn’t accept their pretend science, which in turn is grounds for dismissal of the NCI by rightwingers, because it has been the focus of complaints.)
So, congratulations Vital Signs Blog. For judging the Mayo Clinic’s knowledge of medicine by your standards, and for regarding a refusal to believe the truth by people who agree with you as evidence supporting your own refusal to believe that same truth, you are officially the Stegosaurus of the Week. Next time try thinking with the cerebral ganglion, not the sacral one.
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