Bioethics, healthcare policy, and related issues.
Sometimes it’s the big things, sometimes it’s the little things . . .
“Pro-Life News” (one of several conservative blogs under the “Covenant News” domain – and the only blog I’ve ever seen with an “Abominations” entry in its category index) notes a recent federal court ruling that exclusion of prescription contraceptive coverage in a company health plan is discriminatory.
What caught my eye is Pro-Life’s headline:
“Federal Judgette: Railroad Must Cover Birth Control”
Cute.
You know, every time I ask myself whether I’m guilty of unfairly stereotyping right-wingers, one of them answers the question for me.
UPDATE: Oops – I forgot to include the blog’s tagline:
“Abortion is not healthcare”
So it’s . . . what? Electrical engineering? Carpentry?
I often wonder if right-wingers have to pay the words extra when they use them like this.
Massachusetts Governor Mitt Romney has vetoed an emergency-contraception bill as a way of positioning himself for a run at the presidency. Knowing his veto was sure to be overridden, he came back from a vacation trip to veto it anyway, offering a symbolic sop to the right wing and also giving himself the opportunity for some high-profile grandstanding of his anti-choice credentials. I have argued previously that Romney painted himself into a right-wing corner by taking a low profile on abortion during his last campaign; he now appears to be trying to recover by taking aggressive positions against embryonic stem cell research (as governor of a state with one of the highest concentrations of major research universities!) and now emergency contraception. Naturally, women’s autonomy is the first thing to get jettisoned from Romney’s leaky electoral lifeboat.
In the last few days I have received over 200 comment spams – a typical number. During a hasty mass-delete I noticed – a second too late – that at least one of the comments caught by my spam filter seemed to be a real, substantive contribution, but then it was gone.
If you have submitted a comment recently that has not appeared, my apologies. Feel free to send it again. Try to avoid using the words “texas holdem” and “casino gambling”.
Art Caplan has an editorial in the July 22 Science, reprinted at AJOB/blog.bioethics.net, in which he criticizes the misuse of “Nazi-doctor” analogies in bioethics debates. (For better or worse, he manages the whole thing without ever once mentioning Godwin’s Law.)
Gina Kolata reported yesterday in the New York Times that Medicare – in an effort to speed compliance with electronic medical-records management – is distributing its own patient-records software free of charge to any doctor in the nation. The system is public domain, and boasts a volunteer user tech-support community; it apparently also allows for user modification for those inclined to do so. Given also that it’s apparently hard to install and has a low installed user base, it’s basically Linux for doctors!
Fred at Stone Court has a good post today on the constraints placed on pregnant women. He discusses the removal of Bendectin – an anti-nausea medication – from the American market after massive and apparently wrong-headed lawsuits alleging it causes birth defects, but also notes the almost-hysterical reaction to alcohol use in pregnancy and the generally restrictive climate that pregnant women enter into.
[T]he general impulse to avoid any risk to the fetus, no matter how remote, regardless of the cost to the mother, no matter how severe, both causes substantial unnecessary suffering for pregnant women and reinforces an ideology that, once they become pregnant, women exist for their children rather than for themselves.
In my view, promoting a more realistic understanding of the risks of pregnancy is an important feminist issue.
“More realistic understanding” of anything is certainly a good idea, feminist or not. But I think he is right that the general issue of the obligations women take on in pregnancy to constrain their own lives – or even endanger them, often enough – in favor of fetal health is an important issue in feminism, and in bioethics generally. This is related to what has been known in bioethics as “maternal-fetal conflict”, but that issue has usually been construed in the most dramatic terms, where a woman’s life can only be saved at the cost of risk to or the death of the fetus. The idea that pregnancy itself is a “maternal-fetal conflict” – that being pregnant imposes risks and discomforts on women that can only be alleviated by imposing some risk to the fetus, and that the avoidance of all risk to the fetus imposes increased risks on the pregnant woman – has not generally been acknowledged.
Hugo Schwyzer has an interesting and thoughtful piece about John Roberts and his wife Jane. He notes that Jane Sullivan Roberts is an accomplished professional and that the Roberts’s life choices do not quite fit the religious-winger nutcase stereotype (she has her own career; they married late; they did not insist on a huge Catholic no-birth-control flock of kids; she calls herself a feminist):
A man who marries a brilliant woman who is his intellectual equal when both are in their forties, and happily adopts children with her, is no troglodyte. And a man married to a woman who is a proud member of a group that has Feminist in its title may not be the disaster for women’s rights that some liberals are predicting, nor the champion for the right that some conservatives are hoping.
He has a good point there, but he sells it too hard.
Amanda at Pandagon hits the nail on the head with her post on the Roberts nomination: even if he is eventually confirmed, Americans must be made aware of how much is at stake due to the right wing’s Sex Panic.
Nick at Alas, a Blog, has an excellent post about the burdens and disruptions of pregnancy even for those who want a child.
These [three paragraphs of pains and inconveniences from a "normal, complication-free pregnancy"] are all minor niggles compared to the joy of knowing that I’m having the baby I always longed for. . . . But it has had one effect on me: what patience I ever had with the argument that “if you don’t want the baby you can just put it up for adoption” has vanished forever.
Women who want an abortion don’t object to the fetus, they object to the pregnancy. If the technology existed to remove a fetus unharmed from its mother and transfer it into an artificial womb, with no more complications than an abortion presents, abortion would disappear. Putting the baby up for adoption doesn’t solve the problem: the woman is still forced to act as a life-support system for nine months.
I want this baby passionately, and I still wish it was possible for me to take a break from being pregnant every now and again. Just pop the baby into an artificial womb for a couple of hours and do my own thing without having to worry about how it might affect the baby. And if I feel like this with a wanted pregnancy, how much worse would a woman feel who became pregnant as a result of contraceptive failure and remains pregnant because she’s been denied access to abortion?
Pro-lifers often brush this question under the carpet. There’s no admission that pregnancy is a process, and one that uses up a woman’s physical and emotional resources, sometimes alarmingly. They treat pregnancy as a passive state, purely a question of not having an abortion.
That’s not how it is.
[emphasis original]
Well said. The comments also offer an interesting discussion of the motivations for abortion, and whether “artificial womb” technology would really answer the case in every unwanted pregnancy.
Check it out.
The anti-choice right wing has done itself proud today, jumping on an FDA adverse incident report involving RU-486 with all the illogic, bad thinking, and stupid viciousness they can muster, before the report was even released to the press.
This New York Times article notes that 2 woman have died from intrauterine infection after aborting with misoprostol, or “RU-486″, bringing the total of deaths associated with this drug to 5 all together. Infection is known to be the cause of death in at least 4 of these cases. The Times article explicitly notes that:
[T]he risks of death from infection for users of the pill is roughly one in 100,000 uses – similar to the risks of death from infection after surgical abortions or childbirth, Dr. Galson said.
“There are no alarm bells going off because of this rate, but we are watching it closely,” [Dr. Steven Galson, Director of the FDA Center for drug evaluations] said.
Infection of the uterus after expulsion of the uterine contents is a known complication of childbirth and spontaneous or therapeutic abortion; it usually results from retained products of conception in the uterus. As the article notes:
Dr. Cynthia Summers, a spokeswoman for Danco Laboratories, Mifeprex’s maker, said she did not think the medicine caused bacterial infections. “This same infection has been reported after childbirth and other gynecological situations,” Dr. Summers said.
In other words, “incomplete abortion” sometimes occurs no matter what the trigger for expulsion of the uterine contents. It is the aftermath of that expulsion – not the cause of the expulsion, whether pharmaceutical, surgical, or natural – that is the problem. In this case, it is not that RU-486 caused these women’s abortions, but that the abortions appear not to have gone perfectly smoothly, that indirectly resulted in their deaths – just as it does in other cases not involving RU-486. This seems a perfectly reasonable interpretation of these events, especially, as Summers notes, given that the same consequences are seen in a variety of other situations, and even more so that the overall rate of infection post-expulsion is roughly the same for all such causes. Responsible people knowledgeable about these issues recognize this. (Note that the Steven Galson quoted above, debunking any causal role of RU-486 in these deaths, is the man who, in violation of standard FDA practice, signed the unprecedented letter of denial of over-the-counter sale certification for “Plan B” emergency contraception – so he’s hardly a pro-choice activist.) What did the anti-choicers have to say about the matter, then?
Wendy Wright, senior policy director for Concerned Women of America, a conservative women’s group, said news of the latest death proved that label changes [proposed in response to the 5 deaths] would not make the drug safe.
“Changing the label the last time clearly didn’t help the latest woman who died,” Ms. Wright said. “Sadly, people who support RU-486 apparently believe the risk of death is preferable to having a child.”
This is stupid on a variety of levels.
First, having a child carries the same risk of death from infection as having a chemical abortion – so there is nothing to be gained by not using RU-486. In fact, the overall risk of death from all causes in childbirth is greater than the risk from any form of abortion until very late in the pregnancy – so if avoiding death is the motivating factor, abortion is the preferable choice! At the very least, since you cannot reduce your risk of death by infection by choosing childbirth over abortion, it is not clear what Wright is yammering about.The idiocy of suggesting that choosing abortion means choosing “the risk of death” over childbirth is simply staggering – the facts are completely the opposite of what she implies, yet that has no influence on her.
Second, RU-486 doesn’t cause these deaths from infection. They occur by a mechanism that accompanies any emptying of the uterus, including spontaneous abortion and childbirth. And since they occur at roughly the same rate by all such mechanisms, foregoing abortion and giving birth does nothing to reduce your risk of death from infection. Again, the facts completely belie what she is saying, yet she has no compunction about it.
Also missing from these remarks is any reasonable sense of proportion. Not only is this woman completely indifferent to the relative risks of abortion and childbirth (i.e., that the risk of abortion overall is lower than that associated with childbirth, and the risks of death from infection are roughly the same in each case), there is no sense of what this absolute level of risk means in general. A risk of death of 1 in 100,000 compares favorably with the risk of death in a given one-year period associated with home falls (over 3 per 100,000), being a car driver (24 per 100,000), being a pedestrian (2.3 per 100,000), owning a registered motorcycle (61 per 100,000), and so on. Unless the Concerned Women of America are “concerned” enough to excoriate pedestrians who “apparently believe the risk of death” while walking is acceptable, they are hardly in a position to criticize those who choose to run a much lower risk of death by chemical abortion out of, undoubtedly, much stronger motivations.
Finally, there is the simple viciousness of pouncing on these women’s deaths the momen they are announced to score these stupid and fraudulent political points. Since the anti-choice movement does not balk at terrorism and murder, they can hardly be expected to eschew callousness and bad taste, but it is still ugly to witness.
Bad math, bad thinking, just plain bad sense and bad character: add in the terrorism, murder, and misogyny and that pretty much sums up what’s wrong with the anti-choice right wing.
PS: Anti-kudos to the Times for their inflammatory headline, “2 More Women Die After Abortion Pills”. A more realistic headline might have been “499,995 Women Obtain Safe and Effective Non-Surgical Abortions” or “Infection Rate From Abortion Equal to Natural Childbirth”, or “Abortion Still Safer Than Term Pregnancy”.
John Tierney, the New York Times‘s resident conservative editorialist, often comes off as a decent person – never more so than today, in his profile of Richard Paey, a Florida man with multiple sclerosis and spinal damage from a car accident who is dependent on chronic high-dose opiates for pain control. If you’re at all aware, those last seven words should tell you the whole story: yep, Richard Paey is now doing a mandatory minimum 25-year stretch in federal prison as a drug dealer, for taking his own medication, courtesy of the DEA.
I recently saw an episode of the TV show “House” – about a misanthropic internist at a teaching h0spital and his awe-stricken residents who engage in extended, heated debates over otherwise ordinary clinical diagnoses, but spend strangely little time dealing with the actual practical matters of patient care. (The premise of the show is that “Dr. House” – the show’s title refers to the doctor, not the hospital – is such a renowned diagnostician that he is allowed the privilege of not carrying a patient load, but simply hanging around the building inserting himself into whatever weird diagnostic mysteries turn up and pulling amazing clinical feats out of his ass . . . a privilege that apparently extends to his residents as well.) After viewing my first and only installment of the show, I was contemptuous of its lack of realism and its typical TV overdramatization – the doctor bursting into an OR in street clothes and spitting onto a surgical field in order to stop a (suspiciously-quickly-arranged) liver transplant that only he realizes is the result of a faulty diagnosis, or the entire team of residents racing out to a patient’s home to dig up his dead cat for an autopsy, conducted by Dr. House himself, that will confirm the patient’s illness (. . . dig up his dead cat?).
I also hated the show for the violence it did to medical ethics, and the wrong impressions it was likely to leave in the public mind. In the episode I saw, a doctor pleads with the hospital transplant coordinator to “see what she can do” to bump a patient up the transplant waiting list “because he’s too sick to wait another day” – with not a word about the fact that transplant waiting lists are specificially prioritized by patient need already or that no one would, or would be able to, arrange special priority. Dr. House, in the meantime, orders his resident to deliberately lie to the teenage patient’s father about the patient’s condition in order to get the father to authorize the treatment House thinks is appropriate – nobody in the show ever suggests that House could just tell the father that’s the treatment he thinks is appropriate. The entire group of residents is nonplussed by the suggestion that they should not just give the standard treatment for the most obvious diagnosis if it will interfere with treatment for a possible, but less likely, illness they have not yet ruled out. (“Differential diagnosis” is apparently not taught at their medical schools.) The doctor and the father later engage in a fistfight over what treatment to apply – nothing in the entire episode suggests that the patient’s proxy has independent decisionmaking authority, or even hints at “shared decisionmaking” or “informed consent”. (From what I understand, the “backstory” is that Dr. House is angry and irritable due to constant hip pain – for which he is morphine-addicted – resulting from a botched surgical procedure, which he had explicitly refused to authorize but which his wife authorized as his proxy when he became unconscious, with the justification that because he was unconscious she then had the authority to override his previously-expressed decision. Apparently even Dr. House doesn’t have patient autonomy, in Dr. House’s world.)
An article in today’s New York Times comments on the show as well, noting similar lapses in realism:
My wife, a general internist, finds the show absurdly “unrealistic.” “Doctors don’t do that,” she cries whenever a House physician blithely ignores the boundaries of medical subspecialties. (The same doctors, for example, might perform cardiac catheterization, gastrointestinal endoscopy, bone-marrow biopsy and liver ultrasound.)
(The article, by Sandeep Juahar, MD, laments the most unrealistic aspect of the show: “It portrays a world where doctors have time to solve problems” – whereas, in reality, house staff are so overworked that they simply don’t think about the intellectual puzzles of medicine anymore, but simply process patients through procedures. He blames this partly on legally-mandated reductions in shift length, which is a controversial claim, but he’s probably right about the general trend. At any rate, that’s not what concerns me about the show, though.)
I resent these kinds of shows because of the unrealistic expectations they create. In some cases, they raise public hopes too high – the widely-watched “ER” (a fascination among many ethicists) was criticized for the fact that patients in the show’s emergency department never died; the public came to expect that any emergency or trauma death was malpractice. (I have read recently that the cop shows have the same effect: prosecutors have complained that jurors, having watched forensic-investigation shows, now expect that every case requires the extensive lab work, DNA testing, blood analysis, and other techniques – some of them fictional – that these shows highlight, and that defendants cannot be convicted without evidence from tests and machines that in some cases do not even exist in real life.) Worse, though, is when they distort actual practice, and especially when they show misbehavior that, in real life, would be unlikely or impossible.
The public already fears that transplant waiting lists are manipulated (such beliefs were widespread after Mickey Mantle’s liver transplant). For shows like “House” to suggest that doctors in ordinary hospital practice openly attempt to get – and succeed in getting – special treatment for their patients is irresponsible. For a show that aired only weeks after Terri Schiavo’s death to suggest that patient proxies are not authoritative decisionmakers only adds fuel to a controversial misunderstanding that, as we saw too well, can have terrible consequences. To suggest that perfectly ordinary diagnostic reasoning is somehow controversial, or that the fact that a treatment team could entertain multiple working hypotheses about a diagnosis is somehow scandalous or the source of conflict, leads patients to imagine that being faced with a difficult diagnosis is by definition poor medical practice. Some dramatization is expected, but to suggest that doctors have to engage in physical confrontation, or bodily intervene to protect patients from hastily-scheduled abusive surgery, is a disservice.
I have the same reaction to medical scandal-mongering of the Robin Cook/David Rorvik type: claims that doctors are deliberately killing patients to harvest their organs, or have cloned a human being, presented as plausible “insider knowledge”, are similarly irresponsible. (I don’t have the same objections to clearly science-fictional works like Frank Herbert’s “White Plague”, or Micheal Crichton’s “Andromeda Strain”, where the technical material is somewhat plausible but there was no attempt to deceive the public.) Deliberately inflaming public passions – and misconceptions – about momentous issues is a tawdry way to make your fortune, and has serious consequences.
As has often been remarked, the “doctor shows” on TV have played a significant role in shaping the public understanding of the medical profession and medical practice (the “Dr. Kildare” meme is still powerful decades after that show went off the air). I don’t want to claim that these shows have to regard themselves as public-service entities – for one thing, the unreality of the shows can be a powerful communicative element (“M*A*S*H” was never regarded as a realistic medical show, but it riffed on our expectations regarding doctors and nurses to say important things about medicine and our society), and for another, I don’t want to open a second front for “Parents Television Council” crabs to gripe about. And I certainly don’t want to suggest that these shows should become cheerleaders for the professions they portray, like the old “FBI” series was for J. Edgar Hoover. But some sense of responsibility – especially in fiction shows that pretend to portray reality, as opposed to clearly dramatized shows – is in order. In reaping the public’s attention, and the advertising dollars it brings, it’s not enough to provide a sensation in return; some thought should be given to whether what you’re saying to the public is true, and whether the expectations you’re leaving them with are plausible. Fictional shows are not true in the strict sense, but they can be believable. Believable fiction that creates false beliefs, however, is as irresponsible as a lie. Some lies can hurt.
The Wisconsin State Supreme Court has waded into an interpretive fight over the Emergency Medical Treatment and Active Labor Act (EMTALA), in such a way as to broaden the scope of the act to cover virtually any “emergency” procedure performed in a hospital. Having brought many more procedures under the scope of the Act, the next (upcoming) step in the issue will be a ruling whether EMTALA requires active resuscitation efforts for any premature infant no matter how hopeless. It may be that the court was merely trying to close loopholes in the act, which is intended to guarantee basic emergency treatment for all patients; the effect, however, may be to remove clinical – and presumably parental – discretion from all childbirth cases, including highly marginal ones.
The Missouri State Senate is moving a bill to impose parental-consent restrictions on teenage girls – this time to prevent unauthorized Brazilian bikini-waxing.
As Jessica at Feministing points out:
This bill is really about is policing the sexuality of minors. These people know that a big part of the reason women get Brazilian waxes is because it is considered sexy, younger, less hairy and gross, sensational, all of these things. I’m not sure why nipping Brazilian waxes in the bud is supposed to curb teen sex, but whatever.
I’m not sure it’s even about teen sex, so much; I think she was right the first time: it’s about teen sexuality, and particularly teen female sexuality. As Jessica also notes, it’s not likely that banning waxing is going to have any effect at all on the usual problems associated with teex sex: unplanned pregnancies, STDs, or rampant non-virginalism. But waxing involves pubic hair – you know, that yucky part of the body nobody is supposed to talk about. Letting young people treat it as natural, as something they might even be interested in, or regard as part of their personal body image, is dangerous. It gives teens the idea that their bodies are their own, and the sexual parts of their bodies are their own. It’s not that anything can happen because of bikini waxing – it’s that teens, and especially girls, are making choices about their own sexual identities. It’s not the dangers of sex that the law aims to prevent, but the danger that teens will think of themselves as sexual, and dare to act accordingly.
In other words, this is a manifestation of right-wing Sex Panic – and it seems to be spreading. Once teens needed permission for birth control; increasingly they need it for abortion; now they need it simply to trim their body hair “down there”. The Panic spreads from sexual freedom to sexual autonomy to sexual anatomy – an erasure of any recognition that teens have sexual natures.
[Hat tip to Jessica at Feministing.]
Ruth Faden’s group at the Phoebe R. Berman Institute has been highlighting the issue of the possible effects of research on stem cell transplantation in non-human primate models. If stem cells are to be used – as is often proposed – to counter neurodegenerative diseases like Parkinson Syndrome or senile dementia, research on the safety and efficacy of neural-stem-cell transplantation will have to be done first. It makes obvious sense that this research would have to be done in non-human models that are neurologically closest to humans, which would mean non-human primates – the dangers of attempting such therapy in humans on a completely untried basis are prohibitive. But the closeness of these animals’ neural systems to the human brain raises fears that transplanting human cells into them, or creating human/primate chimeras in utero, would result in monkeys or apes with altered cognitive capacities – perhaps (as Glen McGee tags them) “Really, Really, Smart Monkeys”, or non-human primates with human-like mental and emotional patterns. This raises qualms even within the less-queasy bioethical community. Faden is attempting to get ahead of the problem before the monkeys get pissed off and form a union.
Susan Okie, MD, has a good overview article in last week’s NEJM, reviewing the current state of regulations, ethics guidelines, and national and international research projects regarding embryonic stem cells and somatic-cell nuclear transfer research. It is not too detailed, but highlights the tensions resulting from competing pressures in the field.
[Hat tip: Phoebe Berman Inst.]
Florida Governor Jeb Bush, who did much to create the legal travesty that marred the last years of the Terri Schiavo saga, then embarrassed himself with a vindictive effort to have Michael Schiavo indicted on criminal charges when Bush did not have his way regarding Terri’s treatment, admitted defeat today in this latest legal bungle. In a letter to the editor of the St. Petersburg Times, bizarrely titled “Schiavo Case Wasn’t About Politics”, Bush states:
On Thursday, I closed the state inquiry into the Terri Schiavo case.
He goes on to encourage everyone to execute written living wills, on grounds that:
Completing a living will increases the likelihood that a person’s wishes are known, respected, and followed. It also makes a difficult period slightly easier on family members.
Asininely, he claims that “Terri did leave us with a silver lining” – namely, the knowledge that our wishes can more easily be thwarted and our end-of-life care screwed up beyond recognition without ironclad legal protections in our favor. He goes so far as to point out that:
We never know when tragedy will touch our lives. All of America saw the agony Terri’s family experienced. That could have been any person, in any city, in any state. None of us wants our loved ones to go through a similar situation.
without ever acknowledging that it was his meddling, and that of self-appointed right-wing activists who insinuated themselves into the Schindlers’ lives and worked on their emotions for their own political ends, who created the mess that then took years of bitter litigation to resolve. Terri’s oral expressions of her wishes were adjudicated as adequate under Florida law seven years prior to the final resolution of her case – a judgment that was repeatedly upheld in appellate courts. The entire problem could have been solved easily and without dispute as soon as it became obvious that Terri was not going to recover brain functions and the court had been appealed to for its original declarative judgment as to her wishes. No written living will was needed in this case, nor in many others like it. The various false, delusional, and in cases fraudulent objections raised to carrying out her wishes – which did much to delay the satisfaction of her preferences, even though the courts found no substance to those objections – were in many cases aimed at questions that had nothing to do with the lack of written guidance. Meddlers and grandstanding activists simply created reasons to obstruct Terri’s treatment preference for political and religious reasons of their own – among whom few were more prominent or caused more problems than Jeb Bush in his abuse of his governmental powers. It should be said again: there was no reason this case could not have been resolved properly without a written living will, and in fact cases just like it are so resolved every day across the country; the lack of a written expression of the patient’s preferences was only one of many points seized on opportunistically by politically-motivated parties to block Terri’s wishes, and was as groundless as all the others – all of which were decisively rejected by the courts multiple times.
It is merely characteristic cynicism and illogic for Bush to claim that written living wills are needed to prevent problems such as were seen in the Schiavo case: what he is saying is that they are needed to prevent Bush himself from screwing up the healthcare of anyone who does not have one and whose wishes he disapproves – a problem that would seemingly best be resolved by greater maturity and self-control on Bush’s part. At any rate, we know his claim is not true: the presence of a living will would not prevent Bush from bringing his vicious and meddlesome political and religious ideologies into other persons’ private lives, since we have seen already how he has done so in the Schiavo case for multiple, groundless reasons not involving living wills, in some cases ones invented even after the patient had already died. Since Bush seems intent on destroying other people’s lives and wishes on any grounds he chooses, his advice on ways to minimize his own misbehavior on only one such ground hardly matters.
All this is not to say that people should not have living wills. Bush is right that they at least offer somewhat greater protection against people such as himself than not having one. But we know they do not offer absolute protection: like the poor, right-wing assholes we have always with us. More importantly, it is vital to emphasize the central point: it is patients’ preferences themselves that are paramount, not the trivial question of how they are communicated or recorded. Written records are more reliable in some ways (but perhaps less so in others) than oral conversations, but both are valid ways for patients to make their preferences known. Any move to de-privilege oral statements of preference should be strongly opposed – especially in a state like Florida, with a large elderly population among whom many lack written living wills, but in all other states also. And those who would interfere with patients’ preferences however communicated or recorded should be fought as the moral muggers and extortionists that they are.
[Hat tip: Pro-Life Blogs.]
As pressure mounts for increased research on possible benefits from embryonic stem cells, and Bush’s half-baked compromise position founders under its own illogic and unworkability, anti-stem-cell right-wingers are muddying the waters with new proposals that – intentionally or not – serve to deflect attention away from moves to loosen federal restrictions on research funding. The supposed intention of these proposals is to identify avenues of research that would be acceptable to right-wing extremists; their effect, if endorsed by the rest of the right wing, would be to delay changes in the present policy in favor of promised alternatives that may never appear. This is the same pattern the Bush administration followed on motor vehicle emissions standards (refuse to increase environmental standards now because we can some day use the benefits of untested alternative fuel technology, which Bush offered to fund at trivial levels) and global warming (delay action indefinitely in favor of endless research to satisfy endless objections by right-wing obstructionists). If these proposals are taken seriously – as nobody but their proponents currently does – the extreme right will have succeeded in once more substituting ideological “science” for a reality-based policy in a vital health-related area.
The question of how far healthcare providers should go in catering to the whims of patients/clients is an old one. The problems it addresses are well-known: patients may want things that are bad for them; patients may want things that are simply no good for them (possibly then causing public health problems by using up scarce resources, contributing to bacterial immunity to antibiotics, and so forth); patients may “waste” caregiver time and health resources asking for frivolous things; and so on. At the same time, the imperative in favor of patient autonomy bids us not to judge patients’ desires or stand in the way of their goals, at least without strongly overriding reason to do so.
DB has two good rants this week that touch on this issue.
Mary Johnson has a good article at Ragged Edge Online about the continuing inability of persons with disabilities, and disability activists, to have their perspectives represented in discussion and policy-making about disability.
