Bioethics, healthcare policy, and related issues.
Chris Smith, Republican anti-choice obsessive in the House of Representatives, keeps flogging “Holly’s Law”, a bill to make RU-486 illegal, and named after Holly Patterson, a young woman who obtained a medical abortion and later died of septic shock. It was introduced last session, languished, and reappeared like a bad fungus. Her parents endorse the bill.
No one can say now, of course, but it occurs to me that one person who likely would not endorse the bill is Holly Patterson. She made a choice to use the medication after being informed of the known risks : that at most 6 (now 7) out of over half-a-million users of RU-486 had died afterwards, and that that rate compares with deaths from septicemia following childbirth or surgical abortion, and is actually lower than those from all causes associated with full-term pregnancy. Surely she did not hope for or expect the tragic consequences in her case, but it’s clear she thought, beforehand, that the existence a low level of risk was not reason enough to ban the drug. Almost certainly not agreeing with the proposed legislation would be the half-million women who used this medication safely and effectively. Those who wish to ban the drug seek to supplant every one of these women’s choices – and those of any of the millions of women every year for whom RU-486 is a potential treatment choice – with their commands, and to replace women’s decision-making with obedience to others’ authority. I suspect none of these women, and likely not Holly herself, would grant their informed consent to that prospect.
I don’t mean to put words in Holly Patterson’s or anyone else’s mouth. I dislike the use of women who have died following abortion – legal or illegal – as symbols of someone else’s cause. But I do wish to point out that the decision to use this medication is one that can easily be taken on rational and informed grounds, indeed it is in many cases the safest alternative a pregnant woman has, and that the women who have made that decision have acted intelligently and with knowledge beforehand in a rational defense of their own interests.
This bill, by banning one particular treatment that, even in the face of a number of recent deaths, has a lower mortality overall compared with any other alternative simply cannot rationally be an attempt to protect women from fatal complications in unwanted pregnancy. What it is is an attempt to capitalize on a number of adverse incidents deliberately publicized by anti-choice forces for just that purpose, in order to remove the most convenient abortion option from women’s grasp. It is an attempt to coerce women’s choices about unwanted pregnancy by eliminating one safe possible option. And I doubt any woman who values her autonomy and has confidence in her own ability to make her own choices would endorse the coercion of all women out of pretended sympathy.
Hat tip: Joseph Bryars at Abortion Watch.
A standard tactic of anti-choice harassers is to stalk and otherwise violate the privacy of people holding opinions contrary to theirs. Healthcare givers who provide abortions are routinely picketed outside their homes, their neighborhoods are blanketed with anonymous libelous flyers, and in many cases they are anonymously threatened. Many have given up women’s care in direct response to anonymous threats to their lives or their families (and in face of the extensive history of violence of the anti-choice movement). Another infamous tactic is to post photos and identifying information of abortion providers on Web sites threatening or implicitly encouraging their deaths.
Now an anonymous group of Christian loons is posting – in addition to the usual dense Biblical rants and “judgment day” doomsaying – telephoto shots of people entering women’s clinics throughout Ohio, including their license plate #s and names when available. They have also posted photos, maps, and detailed driving directions to the clinics, and names and photos of clinic staff, with home addresses, phone numbers, and in some cases birth dates. Just in case anyone should be looking to identify or locate any of the clinic staff or their patients . . . for any reason.
But don’t worry. They have a disclaimer. It’s right at the bottom of their multi-screen rant about God’s judgment, the “higher law”, and the need for the death penalty for “murderers”.
One continual concern over the extremist anti-choice position is that it threatens not only to strip away women’s basic rights to bodily autonomy and control of their own lives and futures, but that it is part of a broad campaign to demonize independent and sexually autonomous women, even to the point of jailing them for exercising their rights. The obvious implications of the “abortion is murder” position hardly leave any other option available to anyone who takes that rhetoric seriously. So anti-choicers consistently soft-peddle the most viciously anti-woman implications of their own policies, pretending either that, while they are extremely upset about all these “murders”, they don’t really mind so much about the “murderers” themselves, or that they’ll make an exception for the “murderers” out of their heartfelt sympathy for the women on whom they are imposing forced pregnancy. It doesn’t really make a lot of sense, but they’ve largely succeeded in blinding the public to the end-goal of their long-term strategy.
Eric Ragle, however, attempts to argue that women who commit murder aren’t really murderers. Who is at fault, then – since this all doesn’t happen by accident? Liberals! (You didn’t see it coming?) Sadly, it’s nonsense, but an amusing try at having his cake and hating it too.
Roy M. Poses has an excellent roundup of articles on the consequences of the “businessification” of medicine, at Health Care Renewal. As one who opposes both physician privilege and free-market healthcare, this adds an important dimension to the puzzle. Go browse.
Art Caplan and Glenn McGee have an excellent column on the heartbreaking absurdity of the very existence of the new “reality” show “Miracle Workers”. The premise is that, in a macabre and even more sensationalistic version of “Queen for a Day”, some desperately ill person will be chosen to receive free healthcare from a handpicked team of specialists at a major medical center. It’s hard to know where to start on how sad, how offensive, and how manipulative this is, but Caplan and McGee do a good job:
How can you tell when your nation’s health care system has collapsed?
One sure sign is the creation of a television program that offers access to health care to the desperately ill as a prize. . . .
In reality, a quarter of us have either no health insurance or lousy coverage. No one has a doctor who isn’t using much of the time once spent on patients talking to bureaucrats on the telephone to try and get approval for a prescription or a diagnostic test. A large number of us spend forever in emergency rooms to get basic care. There are many children who get no medical or dental care. The waiting times to see the doctor grow and grow. . . .
The strategy of the payers hired to look out for our health is to routinely turn down requests for reimbursement in the hopes that we will simply give up.
Oh, almost forgot, the cost of this pathetic mishmash of a bloated, inefficient and sometimes dangerous health care system continues to grow right alongside the numbers of people losing insurance coverage or benefits. That is the harsh reality.
What is really irritating about “Miracle Workers” is that the show makes health care seem a privilege, something you are lucky to get, rather than something you should have as a matter of right. . . .
Worse still, the show sends out the message minute after phony minute that there is hope. Well, if you have a lot of money there is. If you don’t, then this show is about as close as you are going to get to cutting-edge health care.
What “Miracle Workers” should make us do is shut off our televisions and sit down and write a letter or an e-mail to our congressional representatives and those who aspire to this office.
There’s more, and it’s better. Go read the whole thing. And write a letter.
UPDATE: Immediately after posting the above, I came across this item by William Saletan at Slate (cribbed from the Wall Street Journal): references to health insurance are cropping up more and more in online single’s ads as a prerequisite to a relationship.
1) A woman’s ad asks, “Do you make at least $75,000 a year and have health insurance?” 2) A man’s ad says he “can supply all the little things like health insurance and the big things like a nice place to live.” 3) Another man’s ad says, “If you are able to add someone to your health insurance as a ‘spousal equivalent’ have I got a deal for you.”
As Saletan notes, both this and the TV show are the consequence of an inadequate and spotty healthcare system in which many people are without coverage; healthcare becomes a consumer good to be traded off against other desired goods. For those who have it it is a kind of economic status symbol, like a luxury car; for those who don’t, it is a point of economic leverage for others who can provide it in exchange for acquiescence in something undesirable (like a lousy job, or the invasion of your privacy on a tacky TV show). And those caught in this grinding, perverse system are simply grateful for any reprieve they can get: through their employer, who depresses wages to offset health benefits; through a spouse with dependent coverage under the same terms; or through a degrading TV display of their needs and hopes.
(Hat tips: Ezra Klein and HealthLawProf Blog; original article from Wall Street Journal.)
Michael Crichton (yes, that Michael Crichton) had a good Op-Ed in The New York Times last weekend, on the patenting of simple biological facts. He notes that patent law on genetic discoveries and other biological non-inventions have reached such an absurd point that it is now literally illegal not merely to make use of genetic sequences someone else discovered, but in fact to discuss or even think about such facts! Even in these days of unrepentant corporate feudalism, that’s a staggering length to go to.
Frank Bowe, long-time disability rights activist, has some useful ideas about strategizing by disabled communities for the upcoming US mid-term elections. The issue requires some subtlety because, as he points out, the disabled community is not as politically monolithic as many other “interest groups”, and so has less political clout as a body and is less easily approached or categorized by politicians seeking support.
Bowe tries to identify themes and issues of common interest to all in the disabled community, and offers a basic primer on electoral activism and on making connections with other communities with common interests. His post sets me to thinking about ways that other healthcare-interest communities could benefit from similar efforts. We surely need effective strategies in this benighted time.
A good idea seems to have reared its head at the FDA; it will be interesting to see what happens to it.
The FDA Blood Products Advisory Committee has responded favorably to a request initiated by the American Red Cross, the American Association of Blood Banks and America’s Blood Centers to revise its donor-deferral policies for men who have sex with other men, reducing the exclusionary period in which they cannot donate from lifetime to one year after their last homosexual contact – the same waiting period as for others who have experienced higher-risk sexual encounters.
Unfortunately, we know what happens to good ideas at the FDA, especially on sexual-health issues.
The eponymous ranter of DB’s Medical Rants voices certain suspicions about doctors’ decisionmaking:
As I understand economics and human motivation, the story I blogged last week about oncologist’s prescribing patterns [a story that is blogged at Sufficient Scruples below] in no way surprises me. I doubt that most oncologists consiously make these decisions based on money. Rather, I suspect that reimbursement subconsiously influences their decision making.
Our decision processes are generally very complex. We need not assume that someone makes decisions with the sole purpose of making money. Nonetheless, we would be naive to imagine that money does not impact our decision making processes. . . . Even if we assume multiattribute decision making, money likely takes its place as one of the attributes.
The problem with this situation is that it has a poor appearance.
There’s a difficult termination-of-treatment case getting attention in England that I think, in some ways, illustrates the right way to go about dealing with these issues, as well as the frustrating complexities they present. It’s refreshing, at least, to see an intelligent discussion of quality of life, futility, and resource prioritization take place among parties who all seem sincere, informed, and rational. In the US, the same case would have religious fanatics picketing the hospital and threatening judges’ lives, while screaming ignoramuses spouted nonsense on talk shows and posturing right-wing politicians hijacked the case for their own ends. As difficult as these matters are, proof that they can be dealt with carefully and on the merits is a welcome surprise.
You’re nobody these days until you have enemies. Your humble scribe has been banned by a prominent anti-choice nut! Now I’m somebody!
Dawn Eden is a copy editor and sometime headline writer who was fired a year ago by the New York Post (yes, there’s a writer bad enough to get fired by the Post!) for unilaterally inserting “pro-life” terminology into a reporter’s text. She runs the blog “Dawn Patrol“, a widely-read anti-choice locus with a hipper-than-usual demeanor and the normal quota of distortion and falsehood. She links some kind of SAT-essay post written by two high school students (yes, really) about the need for politeness in debate and declares it to be her “posting rules”; since politeness is in the eye of the beholder (I think it’s polite to tell idiots they’re idiots – how else are they going to learn?), she essentially has no rules at all but won’t say so. Last week she posted some sort of confused statement about a judge’s ruling in a court case that demonstrated she did not understand the ruling, and so I explained it to her in my normally polite manner. Several of her readers objected that my position on the outcome of the case was wrong, and I re-posted, pointing out that they were deficient in reading comprehension inasmuch as my point had been about a judge’s procedural ruling, not the substantive facts of the case. That comment was deleted by Dawn, who just can’t handle the hard truth. But wait! There’s more . . .!
There’s a strangely provocative recent New York Times article on the Bush administration’s foot-dragging efforts to prepare for a possible avian flu pandemic (they’re not even using the word “epidemic”). The utter lack of seriousness toward this problem has been a growing frustration in the public-health community, but the Times article is odd for another reason.
I’ve noted before the FDA’s studied intransigence on important healthcare issues, apparently manifesting deliberate sabotage of policies Bush appointees disapprove for ideological reasons. Their sister agencies within the Department of Health and Human Services may now be doing the same thing.
It is increasingly obvious that contemporary healthcare practice is less and less consonant with the traditional, mythologized vision of Hippocratic medicine that many people carry in their heads, and which some advocate is still the right model for the professions today. It is fashionable to bemoan the loss of this mindset and its attendant professional iconograpy (the kindly, white-haired patrician physician; late-night house calls; lifetime relationships between doctors and patients; etc.). At the same time, it is inescapable that financial pressures (among others) on healthcare practice have distorted every aspect of patient care without exception – from the patient/caregiver relationship to what treatments are offered and what treatment goals will be honored. This trend, along with other assaults on the Hippocratic model, forces healthcare into a new mold, and forces us to find new ways to solve problems for which simpler, traditional solutions are not adequate.
This may be a good or a bad thing. However, even those who reject the Hippocratic model – and I do – usually also reject an explicitly market-driven model of healthcare, arguing that health is a primary human good, and in many ways a social good, that should not be subject to market forces. So it is thought-provoking to see evidence that healthcare provision occurs in some ways in a “stealth open market”, in which unacknowledged market forces shape care delivery in ways that are denied by the providers who respond to those forces; it is equally provocative to see open advocacy for such practices. But these are issues we have to come to terms with.
I saw the just-released Neil Young concert film, “Heart of Gold”, last week, and it was lovely. In terms of production values, it is far from Jonathan Demme’s best work – at certain times it looked distinctly amateurish – but it does a perfectly acceptable job of conveying the concert performance and the music, which is all that really matters. It’s a simple film – a straightforward record of the best of two nights’ performances at Ryman Auditorium, Nashville (the “Grand Ol’ Opry”), by Young and a huge group of backing musicians, some of them major stars in their own right, with little filler or “backstage secrets” nonsense to break it up. It contains a few chuckles – one of Young’s longtime bandmembers recounts that he slipped in the back door of his first recording session with Young, decades ago, and they had recorded five tracks together before introducing themselves; Young also explains from the stage that the “old man” in his hit song of that name (“Old man take a look at my life / I’m a lot like you were . . .”) was the caretaker on his farm, who couldn’t believe that a “rich hippie” had enough money at such a young age to buy a big spread like that. Mostly it just contains people making music, and the movie rarely gets in the way of its own story, which is a very good thing. Young comes across as a gentle, wise man moved by a kind of sweet longing for connection with friends and family. (It is hard to believe he once wrote “Southern Man” or “Ohio”.) In fact, I was struck by how many of his songs are explicitly about friendship, and how much he values it the older he gets – they far outnumber his songs about romantic love, the standard grist for the country/rock mill.
It’s a very enjoyable movie whether you’re a Neil Young fanatic or not. I recommend it to anyone. But enough of that. It was the bioethics content of the concert that I really wanted to comment on.
More frequently than you would expect, anti-choicers simply can’t control themselves, and throw back the curtain on their real agenda and tactics. The editors of National Review Online do so today with their critical take on the South Dakota abortion ban, arguing both that it will likely fail and that it goes too far outside the “savvy incremental strategy” already in place to chip away women’s rights an inch at a time until there are none left. In truth, that strategy was always evident, and pro-choicers have been pointing this out all along. But somehow, many people managed to convince themselves that the medievals really cared about their issue du jour – that the fight at any given moment really was about waiting periods, or parental notification, or dilation-and-extraction, or whatever, and not really about the wholesale loss of women’s reproductive freedom across the board – that these issues were substantive matters that touched on some moral point the anti-choicers felt was unique and significant, and were not merely carefully focus-grouped tactics in an assault on the basic principle of autonomy that underlay them all. And each time the anti-choicers let us peek behind the curtain, we discover that what they’re really up to is exactly what they appeared to be up to: arrogating control of women’s bodies to their own reactionary, misogynist, sex-fearful, overwhelmingly male, religious-extremist selves. Is anyone listening this time?
Contemporary bioethics is often said to trace its history back to the research-abuse scandals of the post-war years – Nazi medical abuses, the Tuskeegee Syphilis Study and other American scandals, and others. Systematic attempts to bring medical research into a moral framework, beginning with the Nuremburg Code, were among the first formal advances into rationalized medical ethics, and helped inform the debates that soon followed on clinical practice. In the US, the Belmont Report and the establishment of Institutional Review Boards to ensure compliance with requirements for ethical safeguards revolutionized medical research and put the force of federal law behind ethical principles for its conduct. The IRB regulations, despite various complaints and criticisms, remain a linchpin of resarch ethics in the US. They are the mechanism of enforcement of principles of informed consent, risk/benefit proportionality, and non-maleficence in research. In the spirt of “no good deed goes unpunished”, however, some law school professors have identified IRBs as a threat to . . . freedom of speech, as guaranteed by the First Amendment to the US Constitution.
Two highly respected ethicists, Nancy King and Ken Kipnis, have recently published an editorial questioning the ethics of an ongoing trial of the value of synthetic blood-substitute solutions in trauma care. They note certain concerns regarding the role of consent in the trial, but also raise a provocative question about its overall motivation: since most advanced trauma care takes place well within the “Golden Hour” after first injury, in hospital settings where cross-matched blood is readily available, what is the value of testing blood sustitutes over a 12-hour timeframe, as this trial is doing? The rationale is not made clear in the study protocol, but these ethicists suggest a possible answer: the product is really being tested for use on the battlefield by the military, with civilian trauma casualties serving as non-voluntary guinea pigs for war planners, in a study in which the informed consent was “waived”.
There’s some discussion of this decision by the European Court of Human Rights (under the aegis of the European Union), holding that a woman who had eggs fertilized by her then-fiance’s sperm before undergoing treatment for ovarian cancer (which apparently left her with no further usable eggs) cannot now demand that the stored IVF embryos be implanted so she can bear a child from them. British law gives both parties to IVF the right to withdraw permission to use the embryos at any time up until implantation; she and her fiance have since split up, and he no longer wants to be the father of a child with her, and so has refused to allow the embryos to be used. The EU court upheld that law and found for the male partner on those grounds.
The latest in the growing spate of clashes between sound healthcare practice and the self-interested intrasigence of caregivers comes about in Washington state, where a group of hospital nurses sued and won in federal court to prevent implementation of a hospital policy mandating flu vaccinations for all personnel (both to protect them and to prevent transmission to patients). The vaccinations serve a clear public-health good and are probably sound policy (the absolute risk from the vaccine is small; the relative risk to presumably healthy hospital workers from the vaccine is vastly lower than the risk of the flue itself to possibly-compromised hospital patients; and the hospital – and caregivers – have a positive obligation to minimize iatrogenic risk to patients). The nurses’ refusal is somewhat complicated – it is at least partly a union issue (the hospital imposed the policy after the recent collective bargaining round was closed and a deal had been finalized), and partly a response to the hospital’s apparently unilateral approach to the policy, but there are also questions of professional independence and personal liberty raised in the case. The end result, though, is a court ruling that, in some cases at least, hospitals may not impose vaccinations as a condition of employment. The corollary is that, in some cases at least, healthcare professionals may assert self-interest to evade what would otherwise be a reasonably clear obligation of professional ethics. Add that to the growing religious-exemption movement, and it is getting hard to see where healthcare professionalism exists anymore except as an excuse for caregivers to behave unprofessionally.
Below I posted on the breathtaking idiocy of one prominent anti-choice figure. No sooner did I finish than another one popped up. Today seems to be the day for that kind of thing.
“Peter”, of MarchTogether, posted insane and ill-informed nonsense about ectopic pregnancy (it’s not a reason for abortion because “many [ectopic fetuses] can and do survive”), determining for that reason that all women with such pregnancies can just take their damn chances. He later had the grace to update his post by admitting that he was wrong – ectopic pregnancy is almost invariably fatal if not treated – and then asserting that all women with such a condition can just take their damn chances! It takes a brave man to admit he got his facts wrong. . . and refuse to alter his conclusions anyway.
But it gets . . . as I know you anticipated . . . worse.
Arizona Right-to-Life is heavily touting a bill introduced into the state legislature to criminalize the sale of human eggs for in-vitro fertilization. Shane Wikfors, their Executive Director, is either so confused on the relevant issues he can’t formulate a coherent position, or he’s finally revealing “right-to-life”‘s true colors: the belief that every cell of a woman’s body is an independent moral person and she has no rights of control over any of them. I can’t say I’m surprised, but I am a bit flabbergasted.
The long-running fight over emergency contraception (“morning-after pills”), and the bizarre lengths right-wingers are going to to block women’s access to it, are well known. Some confusion – fueled by right-wing deception – seems to persist as to just what emergency contraception is. Few women seem to realize that it is just a large dose of the same hormones used in regular birth-control pills (it is not “RU-486″ – the medical-abortion drug – or any of its constituents), or that birth-control pills have long been recommended for emergency contraception before a convenient single-dose tablet was perfected.
As fear of the growing right-wing assault on women increases, more and more people are seeking to set up information and resources that will enable women to get the care they need and retain control of their own health and sexuality. As a contribution to women’s self-help, and to help people understand and gain access to emergency contraception that does not require arguing with some dipshit pharmacist while your window of action ticks closed, I am reproducing below information from the Feminist Women’s Health Center and Planned Parenthood on how to use standard-dose pills from your own or somebody else’s existing hormonal birth-control prescription in the place of emergency contraception immediately after unprotected intercourse. (See their Web sites for fuller information.)
It has been standard practice for some time that hospital personnel who do not wish to participate in objectionable procedures, especially abortions, may refuse to do so. That hasn’t presented a problem because hospital staffing can usually be managed to avoid such conflicts (those who have refused in emergency cases have been disciplined). Increasingly, though, every blowhard with an opinion about other people’s healthcare has been coming forward to demand a “conscience-clause” exception to providing services they object to to people in need: the best-known are pharmacists who now demand the right to choose whether patients can have their contraception or medical-abortion prescriptions filled. Given the time-limited nature of these treatments, and the third-party stance of the pharmacist to the patient’s actual medical treatment and decisionmaking process, these refusals have come in for criticism, usually on grounds that such refusals violate the professional obligations of the pharmacist. Since the pharmacists have put themselves in a position of being gatekeepers to patient treatment, they may not then refuse to open the gate on personal whim.
With that debate shaping up nicely, a seeming counterexample popped up unexpectedly: two California physicians, on call to participate in a judicial execution, recently refused to do so on ethical grounds; the execution was postponed for several months at least. Most observers applauded this action. Some asked why physicians should be lauded for holding up a death sentence while pharmacists were excoriated for refusing birth control (which, in their more hyperventilated moments, they regard as equivalent to a death sentence for tiny pre-born citizens). The highly-regarded legal commentator Dahlia Lithwick had a widely-commented-on take on the issue in Slate last week, but I think there’s more to be said.
Some more meta-bloggin’:
Taking my friend Angus’s suggestions, I’ve started putting jump tags on blog entries to de-clutter the front page and give casual browsers more to choose from. Read the whole things, though.
I’ve also started SiteMeter monitoring, revealing a slow trickle of visitors I wasn’t aware of. Thanks! Do come back again!
SiteMeter reveals that a good number of people are hitting older blog posts, presumably after searching for specific topics. That’s great. Note that comments are closed on old posts after a certain period of time; I’m sorry for this policy but had to adopt it to try to keep comment spam manageable. (Unfortunately, keyword spam-blocking doesn’t work very well on this blog, because so much spam uses medically-related terms – “viagra”, “cialis”, “erection” . . . – that could conceivably be the subject of a legitimate comment!) So if you see an older post you’re interested in commenting on, drop me an e-mail – we can start a new thread.
As for comments in general, please feel free to leave them. I suspect this (still small) community of readers harbors a lot of intelligent and informed people, and I’d like to get a dialog going. It also helps a lot to know there are people out there reading the material; until I started SiteMeter I honestly though nobody at all was coming by. I tend to offer “the final word” on things in my posts, but that’s just me. Feel free to disagree, criticize, or suggest a new perspective; I’d like to hear from you.
Thanks for dropping by!
