Yesterday, the Susan G. Komen Foundation  – the “pink ribbon” breast-cancer research and treatment organization – announced it was ending its long-standing annual grants to Planned Parenthood clinics to perform breast-cancer screenings and referrals for low-income women. The given reasons are as disingenuous as they are shameful: in short, SGK hired a new Vice President who, in a recent losing bid for the governorship of Georgia, had explicitly pledged to defund healthcare services at Planned Parenthood in that state. Within months of her hiring at SGK, SGK just happened to create an internal rule declaring that it would not fund any programs at organizations that were under Congressional investigation; that policy just happened to apply only to Planned Parenthood, which just happens to be the target of a fishing-expedition investigation by a virulently anti-choice member of Congress. So: the right wing has been demonizing and targeting PP for years; one jackass Congressmember creates an investigation simply to grandstand; SGK hires an avowed anti-choice opponent of PP; SGK then creates a new rule about “investigations” that applies only to PP; SGK then abandons its own PP-mediated cancer screening programs and claims it had no choice because of the bogus investigation. Well played, but hardly subtle.

This is as sickening as it is tragic. The results will be, literally, death for a predictable number of women who would have been referred for mammography and received a positive cancer diagnosis, and appropriate treatment, following examination at Planned Parenthood, but who will now go undiagnosed after those screening programs are shut down (assuming adequate replacement funding is not obtained).

I’d like to encourage SGK to reverse their decision – to consider all the benefits that come from these screening programs, and the need there is in the community for the irreplaceable medical resources they provide. I’d like to remind them that Komen Affiliates have funded breast health services through Planned Parenthood programs that have provided breast health education and breast screenings for hundreds of thousands of low-income, uninsured or medically under-served women, and that, in some areas, Planned Parenthood may be the only local source of breast health care. I’d like to point out that women served at Planned Parenthood may receive a clinical breast exam, and when further screening is needed, a referral to either a state program or a private mammogram provider. It would be useful to consider that because SGK only works with non-profit organizations, these women’s  mammograms may be paid for by the Komen-Planned Parenthood grant, since many mammography providers are for-profit but Planned Parenthood works on an entirely non-profit basis for all its services.  Surely they recall that during the past five years up to 2011, Komen Affiliate grants to Planned Parenthood paid for:

• Breast cancer and breast health education for nearly 160,000 women
• 139,000 clinical breast exams
• 4,866 mammograms
• Detection of 177 breast cancers

But I may not need to tell them all that. They already know it. I’m sure of that because every bit of the above information comes from a letter SGK itself posted, on their pink-ribboned letterhead, on their own website, back when the religious right was pressuring them to cut off cancer screening to low-income women as part of their misogynist anti-sex witch hunt.

In that letter – aimed at deflecting criticism from anti-Planned-Parenthood crusaders, and written before SGK hired its own anti-choice crusader as VP – SGK extols its work with Planned Parenthood, and rightly notes not only that the screening programs it funds serve hundreds of thousands of women, and identify thousands of previously undetected potential cancers, but that these programs are carried out in many cases by the only provider willing or available to do them, and thus are literally irreplaceable. In publishing that letter, SGK took a strong stand in defense of women, and of those who provide the vital – in the most literal sense – services that no one else will or can do. It openly and forthrightly documented the need women – almost exclusively low-income women, and disproportionately women of color – have for Planned Parenthood, and the great benefits they got from the Planned Parenthood programs made possible by SGK’s funding. The letter expresses a clear and unambiguous commitment to serving women (even while mush-mouthing on the issue of abortion), and takes a bold stance in the face of harassment and misogynist bullying.

That letter is no longer available on the Susan G. Komen website.

In fact, as of this writing there is no news whatsoever on SGK’s on website regarding its abandonment of the cancer screening programs it once supported Planned Parenthood in providing, and a search for “Planned Parenthood” on that site returns only a single, obscure, broken link. That link turns out to be the page that once held the letter mentioned above. It’s not accessible or advertised. Some careful Googling, however, locates the letter in an unlinked section of SGK’s site. The letter defending Planned Parenthood, its patients, and SGK’s support for them, still exists – but they won’t let you see it.

Here it is, in its original full-color form: Susan G. Komen letter describing benefits from Planned Parenthood cancer screenings.

I’d like to think that “as long as there is a need for health care for vulnerable populations, Komen Affiliates will continue to fund the facilities that meet that need.” After all, they said so – barely 8 months ago. But obviously they’re no longer willing to stand by their word. In fact, they’re no long willing to admit they ever gave their word. They’ve shown us what courage and fidelity to women truly amount to – for them.

This video is great in so many ways: Taylor’s discussion of the ways society makes her life with an impairment harder or easier; her description of the psychological burden in going into a coffee shop and ordering coffee, and then having to deal with the difficulties of either trying to carry it herself or asking for help – “it’s a political protest for me to go in”; the simple and lovely depiction of two affectionate people being out together, while not pretending the issue of disability doesn’t affect them; the segment in which they go into a used-clothing store (which charges by the pound! – I love San Francisco!) and buy Taylor a warm sweater, which is both a perfectly simple and normal act, and complicated by the ways impairment affects her ability to try it on and the process of payment – ending with the store clerk’s matter-of-factly accommodating reaction. Taylor works in a useful bit of disability-theory: the distinction between “impairment” (physical limitations) and “disability” (difficulties in living caused by social context or discrimination), and the video underscores that point again and again as Taylor goes about her day and talks about how disability affects her. (I’m not sure I’d go so far as to say that she has “what the medical world has labeled as arthrogryphosis”. I’m very much sympathetic to the notion of individualized definitions of disease and health, but I don’t think that means there’s no such thing as a diagnosible condition. I see no reason to say that she doesn’t really have arthrogryphosis if she meets the diagnostic criteria for it – as, by her own description, she seems to do. Pointedly repudiating her own use of that name, as she does in the video, doesn’t seem to me to gain anything; whether she wants to call it a “disease” is another matter.) There are also brilliant moments of reflection on the nature of embodiment and what it means to live an embodied life in a social context.

Just a beautiful, sweet film with surprisingly profound content, visually and verbally. I can’t wait to see the rest of this series.

Taylor:     When do you still count as a human?

Butler:     My sense is that what’s at stake here is really rethinking the human as a site of interdependency.

. . .

Butler:     [When] you ask for the coffee, or indeed even ask for some assistance with the coffee, you’re basically posing the question “Do we or do we not help each other with basic needs?”

HT: sexgenderbody

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:

• uterine vacuum aspiration
• dilation & evacuation
• dilation & currettage
• intact dilation & evacuation

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:

• cervical dilation (used as part of many gynecological procedures including abortion, but not abortive in itself)
• menstrual extraction (used to evacuate menstrual tissue after heavy menses, and also for early abortion)
• hysterotomy (used to access the uterus through the abdomen, used for late-term abortion but also for in-situ fetal surgery and non-abortion-related surgery)
• induction of labor (used to expel a fetus in late-term abortion, and ubiquitous in normal delivery or the removal of a miscarried fetus)
• hysteroscopy (an examination and treatment technique used in many conditions of the uterus, only sometimes for abortion)
• and more . . .‡

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:

• infection from retained products of conception
• hemorrhage or infection after incomplete miscarriage
• hemorrhage or maternal exhaustion after failed labor
• virtually any other condition that requires emptying the uterus, at any time just before or after fertilization of an egg or during any actual or failed pregnancy

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:

• persistent menses or dysmenorrhea
• uterine fibroids and other endometrial malformations
• removal of retained products of conception
• cervical dilation for any purpose
• uterine aspiration for biopsy
• any other condition requiring dilation of the cervix, aspiration currettage of the uterine contents, or open surgical procedures on the uterus

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).]

Comments

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.

The problem is that they were incautious enough to go on a National Geographic TV special about “taboo” lifestyles. Senator Tom Coburn saw it and has now pressured the Social Security apparatus to investigate this particular person based on his appearance on the show. His ostensible grounds for complaint are that, from what he saw on the show, he believes Thornton appears to be capable of supporting himself:

Given that Mr. Thornton is able to determine what is appropriate attire and actions in public, drive himself to complete errands, design and custom-make baby furniture to support a 350-pound adult and run an Internet support group, it is possible that he has been improperly collecting disability benefits for a period of time.

The first thing to be said about this is that Coburn seems to have a very strange idea of what “disability” consists in, or what is or is not required to hold down a job. There is nothing about being SSI-eligible that implies you cannot “determine what is appropriate attire and actions in public”, or drive a car or take care of personal needs such as performing errands. And there is a vast gulf between being able to do all or any of that and being able to support yourself in a capitalist economy (to say nothing of one in a years-long recession with close to 10% unemployment). Coburn seems to harbor both a very condescending view of what disability is, and a typically hard-hearted view of what self-reliance requires: the disabled are essentially children, mentally non-competent, cannot even choose their own clothes, and certainly cannot act independently in public, drive, or run errands unsupervised; at the same time, anyone who’s not actually bedridden ought to earn their own living or die trying. Coburn’s worldview seems to be taken from a Dickens novel: spastic lunatics chained to the walls in Bedlam, and starving cripples begging in the streets. In addition, Coburn’s apparent belief that anyone who can cobble up a chair out of 2x4s (I’ve seen pictures of Thornton’s furniture; he’s not exactly Sam Maloof) should be working as a full-time woodcrafter is rather absurd, and the idea that maintaining a Web site imputes the ability to earn a living identifies someone who is clearly struggling to grasp the nature of the intertubes.

But for all its confusion, Coburn’s statement at least seems to focus on the right issue: it’s true that Thornton is not qualified for SSI disability payments unless he is actually disabled and partly or wholly unable to support himself, and it’s not unreasonable to ask whether that is true.  Given that Thornton does offer his furniture plans for sale, and he and his friend apparently also offer a paid sleep-over service catering to other adult babies, he apparently does have some income and there may be a legitimate question about his qualifications for disability. As far as it goes, that’s not an unreasonable question to ask.

What gets me about this is that a senior US Senator took the time to pursue an inquiry against one single individual under a program that accounts for close to $13 Billion per year, or more than 20% of the entire national budget. Does he really think that is a productive use of his time? More to the point, was this really prompted by a suspicion that this one disabled guy might have some illicit sturdy-furniture income he hasn’t been reporting, and Coburn is determined to find out how much that is?

It seems obvious that Coburn focused on this case not because this SSDI recipient has made two or three pieces of exceedingly simple furniture (Coburn’s letter notes that one basic chair took him a year and a half just to design – hardly qualification for gainful employment), but because “his choice to live as an adult baby violates societal norms”, as Coburn himself puts it. In fact, although Coburn’s letter ostensibly focuses on Thornton’s possible ability to hold a job, it repeatedly mentions his lifestyle. More than that, Coburn’s official Senate Web page touts the same letter without a single reference to actual qualifications for disability; instead, it proudly notes that Coburn is “requesting an investigation of how people choosing certain lifestyles – focusing specifically on those who live their lives role-playing as ‘adult babies,’ are able to get taxpayer-funded Social Security Disability Insurance (SSDI)”. In short, Coburn is using his position as ranking Republican on the Senate Sub-Committee on Investigations to bring down the heat on “people choosing certain lifestyles” – for which the issue of possible income on the side is only a convenient pretext. And the crowing and mockery this has already generated on the usual right-wing Web sites can easily be imagined.

It’s hardly worth saying that this is ugly and mean-spirited, or that it makes little sense if taken at face value. Whether or not this person is disabled has nothing to do with how he chooses to dress or what kinds of emotional relationships he values. And the nonsense about driving, running errands, or designing furniture is pathetic as an excuse for a challenge to what is apparently a documented medical disability. Coburn has found someone whose lifestyle he disapproves, and is taking advantage of the fact that it’s unusual and off-putting to many people to harm that person while grandstanding on the issue to promote his anti-social, anti-government ideology.

It’s not like he wouldn’t have been glad to cut anybody else’s Social Security benefits (Coburn has consistently voted against virtually every aspect of Medicare, Medicaid, SCHIP, and other healthcare programs, against the SSI “lockbox”, and in favor of privatizing Social Security). But finding someone in the program he can despise, and then inviting (and getting, in spades, from the right wing) open mockery of that person’s lifestyle as a lever for attacking their health benefits, is a right-wing two-fer: hurting people who aren’t like them, while casting social welfare as unnecessary or a fraud. The message, in political or social terms, is clear enough. But the message for the disabled, and those with alternative lives, is also clear: if you’re disabled, don’t be weird, because it makes you a target; and if you’re weird, don’t expect help if you’re also disabled, because you don’t deserve it.

I am gay and for 20 years, I have had a best friend and mentor who is also gay. Besides regular friendship, I have taken care of him when he’s sick, staying at his house, getting him to the doctor. But we do not live together. There has never been a sexual component to the friendship.

He is getting ready to retire. As part of his retirement package, he can designate a domestic partner to receive a payment of over $150,000 a year after his death. He has asked me if I want to do the paperwork to be his domestic partner. As I said, we do not and have never had a sexual relationship. I do not live with him. Is creating this arrangement unethical?

Thanks, Christopher, for your question. It’s an interesting situation; let’s see what readers have to say about it.

My response is below in comments. Readers: feel free to join the discussion!

(And feel free to post your own questions to “Ask the Ethicist” – see link in top right-hand sidebar!)

Overeating is a behavioral problem, not a surgical one

This may seem to be a statement of the obvious, but the solution to a behavioral problem is not surgery. Overeating is not a surgical problem — it is a behavioral one. The problem is not because the stomach is too big and needs to be made smaller. It is a function of how much food is put into the stomach. Surgical “solutions” should be the absolute last resort measure.

The letter – from an Australian physician who touts himself on the Web as a “DIY health” guru – goes on to make a number of good points about bariatric surgery (mostly stomach-banding), couched in terms of clinical efficacy and relative risk: it does not work for everyone; the campaign to expand the qualifying criteria may include patients who have marginal need or expected benefit; there are known side effects and long-term safety is unknown; the promoters are compromised by conflicts of interest. These are all relevant considerations. But the overall tone in the letter, and even more so the comments, is both judgmental and dismissive. (From commenters: “People are obese simply because of their own behavioral inability to control their diet . . . the solution still lies FIRST in the individual admitting his/her 100% responsibility in the problem weight.” “Obesity results solely from laziness and apathy, which consequently are the same traits that are leading to the devolution of our species.”)

The giveaway here is the headline: yes, overeating is of course a “behavioral problem”, not a surgical one, because in this context “behavioral problem” clearly refers to the etiology of a pathological condition (obesity), while “surgical [problem]” clearly refers to the preferred mode of treatment for that condition. The writer conflates the two categories, and then draws an inference from a logical contradiction of his own making: it’s true that the  etiology of this condition is not its treatment, but that’s true in every case, so that hardly tells against that treatment considered in and of itself. We can reinterpret the sentence to make sense, but only by making it obviously absurd: either “Overeating is a behavioral treatment, not a surgical treatment” or “Overeating, not surgery, is the cause of obesity”. There is a vacuity of clinical concepts here that suggests something else is at work in the writer’s animosity to certain kinds of treatments.

What the writer is really trying to say is this: “Obesity is caused by behavior, and should not be treated by surgery”. And the logical implication of that statement, and the letter and comments that follow, is this: “Obesity is caused by behavior, and therefore should not be treated by surgery”. The clinical counter-indications for surgery (and medical treatments for obesity – he’s against pills, too) that the writer details do not really seem to be the issue in his mind. Instead, certain treatments are ruled in or out categorically, on the basis of criteria of appropriateness that seem to hinge on his view of what health and medicine are fundamentally about, or how they are fundamentally related. There is a sense that diet is better than medical treatment because it is lower-risk, but also a sense that people who brought their conditions upon themselves behaviorally should be expected to work out their own salvation without clinical intervention. There is a clear implication that the writer would still object to bariatric surgery even if it were safer and more effective, simply because it’s not the kind of treatment he thinks this condition should get, in some essential sense (“obvious[ly] . . . the solution to a behavioral problem is not surgery”). Because the condition is behavioral, the treatment should be behavioral: QED.

From this perspective, the choice of treatments for a given condition depends on some sort of criteria of categorical appropriateness – a determination of what kinds of treatments are appropriate to any given condition, only after which do questions of safety and efficacy come into play. (This becomes more obvious in the letter above when the writer airily dismisses the notorious psychological difficulties of dieting with remarks about “responsibility for one’s actions”.) And this is the question that really got my attention about this issue. The concept of “appropriate” treatment is one that gets to the heart of healthcare as a practice, and of the ethical dimensions of such seemingly scientific concepts as the definition of disease, relative risk, and clinical indications for treatment.

To define clinical indications in some way other than in terms of clinical efficacy establishes medicine as a categorically defined practice: a praxis incorporating certain beliefs or techniques that are “just right”, and eschewing others as “just wrong”. The old ethic of “doctor knows best” exemplifies this idea to some extent (in regard of the roles of patient and physician: the doctor prescribes; the patient complies). More broadly, medical ethics based on a perception of distinctly medical virtues and traditions (Pellegrino’s “internal ethic of medicine”) makes all of medicine categorical; more than that, it moves the locus of medical ethics entirely inside the profession, such that what is right or wrong for a given patient is what is or is not in keeping with the behavioral standards applicable to the doctor. Even more modern theories of medical ethics do the same to the extent that they perceive specific types of treatments as right or wrong in and of themselves.

The movement toward patient autonomy and patient-centered care challenges this ethos at a basic level: the whole idea that patients may determine their own interests for themselves necessarily implies that healthcare is defined as serving those interests (or else we get a macabre dissociation between what patients need and what healthcare is for). The patient-centered ethic has fundamentally reformed healthcare practice in many areas, most notably refusal and termination of unwanted treatments, and more indirectly through the rise of cosmetic, nutritional, sports- or adventure-oriented, assisted reproductive, and other forms of “aspirational” (rather than pathology-driven) healthcare. The idea that what patients need is not determined by the pursuit and maintenance of “normal species functioning” – never exceeding its bounds and normal range, either positively or negatively – throws open a potentially unlimited range of possible treatments for any given condition, and indeed a potentially unlimited range of praxis under any conditions, whether or not defined in terms of disease and treatment. (The body modification movement blows the doors off the disease/treatment model, and increasingly off of any old-fashioned notions of normal species functioning.)

From this perspective, it is impossible even to formulate a declaration of the form: Because the condition is ________, the treatment should be ________. Radically patient-centered care does not require a “condition” to authorize a “treatment”, and takes it as fundamental that some patients may deny that an otherwise-recognized “condition” even exists (as in the case of the “fat acceptance” movement), while others may perceive, personally, a pathology in what would previously have been perceived categorically as normal (as with gender identity disorder). In addition, the particular best treatment for any given patient, whatever their circumstances, will be the one that best meets that patient’s interests as they themselves understand them – which may well be a riskier surgical procedure rather than a more burdensome lifestyle change, or vice versa, as they themselves perceive is best for them.

The significance of this non-categorical, patient-centered, situationally-responsive understanding of healthcare praxis is enormous. Aside from the overt impact on practical healthcare that the patient-autonomy movement continues to have, embracing a truly patient-centered ethic of care guides thinking about how to understand patient needs and how to meet them. In particular, it rules out categorical thinking of the type that prohibits providing certain treatments (with due consideration of cost, risk, and expected benefit) for a given patient or category of patient because they do not conform to some generic standard of appropriateness, and it requires that the patient’s own understanding of their goals, priorities, and risk-tolerance, be the determinative factors. Clearly the message hasn’t reached all corners yet.

Davis’s article turns almost exclusively on the apparent resentment she feels at the prospect of Hinckley’s life getting better while his victims still suffer. She dwells on the seriousness of Hinckley’s actions, spending the first third of the text on the injuries sustained by the victims and the toll that took on their family members. She details their wounds, their lasting disabilities, how their children cried, how their wives felt then and now, even the noises they make in their sleep. She lards the piece with a slightly resentful description of Hinckley’s life in the locked facility: after many years, he was allowed gradually increasing off-site visitation with his family, and now has the privilege to spend up to a third of each year on what amounts to house arrest under direct supervision at his mother’s home; she seems particularly peeved that he has reportedly had several girlfriends among the female population of the hospital (Davis goes to lengths to detail the violent incident that committed one of his girlfriends to the place, as if Hinckley himself should remain incarcerated because of what she did). Davis almost entirely avoids the question why Hinckley is in a hospital, rather than a prison, or why he has been granted increasing freedom while there, or why he might someday be released back into the community. (I.e., he really was sick; he really has gotten better.) She acknowledges that he was found to be mentally incompetent at the time of trial, but at the end of the piece lapses into the lazy trope that he “beat the legal system” because of his “wealthy parents who bought him a tenacious lawyer” – as if stalking a teenage girl for years, attempting to assassinate two presidents (he was arrested while stalking Carter with a gun), and then writing to the woman that “I’m going ahead with this attempt now . . . I cannot wait any longer to impress you”, just before shooting four people including the President of the United States, is the sort of thing an ordinary, non-mentally-ill criminal usually does (and as if somehow he was only entitled to a cheap lawyer who was easily discouraged – yes, Davis actually says that it was unfair of him to have a good lawyer). She ends with further vengeful complaints about the fabulous life she somehow imagines him leading after more than 30 years in a locked psychiatric facility (“Hinckley might in time reside as a free man in Williamsburg, stopping at the local coffee shop, browsing bookstores, maybe venturing onto the local tennis courts and golf courses”), compared to the ongoing pathos of the lives of the victims of his crime (“Jim Brady will live the rest of his life in a wheelchair and a bed. . . . Tom Delahanty will stay out of reach, forever scarred. My mother will hear the echoes of that day”).

This is entirely understandable, and terribly dangerous. It’s also an excellent illustration why victims’ family members are not allowed to serve on juries or parole boards for the people who hurt them: we can sympathize with their anger, but we can’t imagine they could be reliable judges. Davis does an end-run around that, in this case, by trying Hinckley’s case for release in a two-page spread in a national magazine, based virtually entirely on her own emotional reactions to his attack on her family and their supporters. Hinckley gets to make no statement on his own behalf, let alone in Time Magazine. And that is a particular concern in this case, because Davis is trying not just Hinckley but every patient in the forensic psychiatry system. The Hinckley case has already all but destroyed mental healthcare for accused criminals, and eviscerated the basic concept of moral responsibility as instantiated in our legal system. (The case prompted a nation-wide gutting of diminished-capacity laws, thereby diverting people who, by definition, are not deterred by the criminal law into prisons where they cannot be treated for the conditions that caused them to harm others, while assigning legal punishment for acts for which they cannot be held morally responsible.) I don’t know if Davis is trying to close the circle by shutting down Hinckley’s own treatment pathway, or is just angry, but she is attacking not just the man who attacked her father, but whatever little may remain of an entire nation’s willingness to make basic moral distinctions and to deal with the relationship between responsibility and justice in an informed way. You can understand and sympathize with her reaction to her father’s shooting, but we can’t let her personal interests and emotions further damage the moral and scientific basis of what, already, can only ironically be called our justice system.

Diminished capacity defenses (“not guilty by reason of insanity”) exist for two reasons: the basic medical fact of a lack of rational or moral evaluative capacity in some people who are otherwise behaviorally functional, and the basic moral facts that the ability to control one’s behavior is pre-requisite to bearing responsibility for it, and that moral responsibility for bad behavior is pre-requisite to punishment. Hinckley is as good a case as you will ever find of the need for this category in the criminal law: he distorted his entire life for years to pursue a fantastical relationship with someone he had no real connection with, and he truly believed that shooting the President would convince her to love him; he would never have acted as he did without these clearly insane beliefs, and he acted without any recognition that his actions were wrong.  He was clearly mentally ill, and that was clearly the reason for his violent act (facts that were amply confirmed upon examination before his trial). Punishing people who cannot control themselves for psychological reasons is as inhumane as punishing epileptics for being possessed by the devil – and rests on an equally indefensible obliviousness to the link between punishment and guilt. Furthermore, it’s pointless, and undoubtedly counterproductive: it drives the sickest malefactors away from the mental-health system that might do them some good, and sentences them to incarceration for specified periods with virtually no real psychiatric care, followed by release of the untreated, prison-damaged inmate back into the community. The whole point of a psychiatric plea is to shift cases involving mentally ill defendants out of the prison system and into a treatment system, which is what they need, what will benefit society most, and what makes most sense in light of their actual fact of diminished moral capacity and thus diminished moral liability for irrational behavior.

Recognizing the fact of moral guiltlessness in the severely mentally ill does not give them free rein to harm people at will; in fact, it often consigns them to far more extensive restrictions on liberty than an ordinary jail sentence would do. Violent criminal defendants who are acquitted by reason of insanity are diverted to involuntary detention facilities in which, in every state, there is no legal limit to how long they can be held, no matter how minor their original offense was. (Most states grant some sort of right of periodic petition for re-evaluations of the patient’s mental state, and possible release, but that in no way guarantees that patients will be freed without their doctor’s recommendation. In another time in my life, I personally attended hundreds of these hearings and never once saw a patient released over a doctor’s objection.) This makes sense, since, again, the whole point is that they are ill, and are held because they are ill, and thus should be held as long as they are ill, even if the sentence they would have gotten for a criminal conviction would have been shorter. But for exactly the same reason, such patients must be released when they are no longer ill. And similarly, it is important that the situation in which they held be the least restrictive one possible – both because the restriction is not intended to be punitive, and the patients should be held free of unnecessarily burdensome impositions, but also because less-restrictive settings, including passes into the community when appropriate, are likely to be more beneficial in most cases.

Mentally ill people do get better, and when they do get better, they should be freed from confinement. Understandably this rankles some, like Davis, who may have been harmed by their behavior while ill (and the many more who simply hate people they don’t understand, and like to hurt the downtrodden); but personal resentment, even actual victimization, are grounds for sympathy, not grounds for vacating the most basic moral distinction – between being morally responsible for one’s actions and thus liable to punishment, and not being responsible and thus subject to paternalistic treatment – still less for making our heartless legal system less humane and less devoted to moral right.

Davis is right that Hinckley’s actions did terrible harm, to his immediate victims and many others who care for them. She is justified in resenting its toll on her family. And it is worthwhile to acknowledge those people’s sufferings, and to sympathize with them for the terrible and undeserved thing done to them, and for what they still suffer as a consequence. But she is completely wrong in offering these woes – almost exclusively – as a justification for using Hinckley’s medical incarceration as a form of overt punishment. No one must be punished for acts over which they could not exert effective control – the very definition of “diminished capacity” – and we must not turn our medical system – especially its government-controlled functions – into a tool of coercion or retribution. But there is virtually no discussion in Davis’s article of the basic question whether Hinckley is fit to return to the community; in fact, Davis seems to agree that he has shown good behavior and general improvement during his time in the hospital and does or eventually will qualify for release. She details the discomfort some of his victims feel at that prospect, but that also is not evidence about Hinckley, but about them; as before, Davis’s entire understanding of the case is focused on the victims, but the question at hand – not a question of loyalties or sympathies, but of straightforward clinical fact – is whether Hinckley himself now has the psychological capacity to assume his place as a free citizen, that is, whether his treatment has been so successful that it can now be ended (or at least shifted to an outpatient basis).

Davis substitutes her concerns for Hinckley’s acts, seen as a crime, for the answer to the clinical question about his current mental health status. But Hinckley’s act – however terrible – was not a crime. It was the product of mental illness he could not control. That is why he was not convicted of a crime, but was consigned to treatment for his illness. The whole point to that treatment was that it was supposed to make him better. It apparently has – and that fact has to mean something; specifically, it means he doesn’t need (the same) treatment any more, and thus there’s no justification to impose it on him. It is even more egregious to use a locked psychiatric facility as a prison just because we may resent the fact that he didn’t go to prison the first time, and nothing less than barbaric to subject him not only to incarceration but harsh medical treatments (he apparently was subject to mandatory drug therapy) for no reason other than we approve of the fact that he doesn’t like them.

Thanks to the outrage of short-sighted people, Hinckley’s act was seized on in the early 1980s as an excuse to eliminate mental illness as a consideration in assigning criminal guilt under federal law and in many states; the law in most cases in the US now declares, implicitly, that there is no such thing as diminished capacity – that all persons are morally responsible for what they do whether or not they understood it, intended its consequences, or could control it. Those who demonized Hinckely the first time brought US law back to the level of the Puritans who hanged animals for “crimes” they had committed, such as kicking a farmer – holding all bad acts to be liable to punishment whether or not the actor was morally responsible for them. Davis now invites us to do the same to Hinckley himself, 30 years after the event, by consigning him to endless incarceration and involuntary medical treatment when she herself acknowledges that he no longer needs it.

If we are to have a forensic clinical treatment system that is anything at all but another fancy way to torture people, we have got to acknowledge and cleave to basic principles of morality and justice – principles that were once the pride of US law and society, and are now often treated as mere inconveniences. If we’re not going to close Gitmo, we can at least refrain from turning hospitals into mini-Gitmos for anyone a prominent person happens not to like.

[Cross-posted to the general-issues blog Lean Left.]

The child at the center of this case is an infant born with an unspecified “neurodegenerative disease” that has rendered him ventilator-dependent and in a “vegetative state”. (No press source I have seen has used the term “persistent vegetative state”, which has an exact clinical definition, and no doctor has been quoted on the patient’s actual condition, so it is not entirely clear what his status is.) It seems to be agreed that the condition is terminal. The family has had one child with a similar condition, who was brought home from hospital and died six months later. They are requesting to do the same with this child, but his vent status complicates this.

Here is a reasonably clear explanation of the background of the case:

The hospital precipitated the standoff last month when it sought the family’s permission to remove Joseph from his ventilator. This would have led to suffocation due to his progressive neurodegenerative disease, which his doctors say is fatal anyway.

The Maraachlis want to bring Joseph home to die, but to do so he must be removed from his ventilator and given a tracheostomy.

The hospital has refused to do a tracheostomy, insisting “it is not a palliative procedure. It is an invasive procedure in which a device is installed in a hole cut in the throat.”

For its part, the family refused permission to disconnect, then went public over it, then viral, with a save-baby-joseph Facebook page, a petition site by the same name and YouTube videos showing the baby, who the hospital claimed was vegetative, responding to tickling.

The story crossed the border when a Detroit hospital initially agreed to examine Joseph but then reneged. Fox News jumped on the story anyway, and in the resulting furor the staff at London Health Sciences Centre was subjected to death threats and accusations of murder and euthanasia.

The hospital has secured favorable rulings from both a judge and the Ontario Consent and Capacity Board, but the family has nonetheless gotten the hospital to hold off. Now the latter is insisting it was always willing to let Joseph go home — without a tracheostomy.

The hospital also offered to assist with a transfer to another facility willing to accommodate the family, but none could be found. Every hospital contacted, or which agreed to look into the case, refused to accept the transfer – a situation that is common in cases in which families demand medically futile care.

Today, a Catholic group known for grandstanding on end-of-life cases has apparently arranged a transfer to a US facility; Fox News helpfully inflames the issue with its usual journalistic integrity:

The baby who was hours from being pulled off life support at his Canadian hospital has been rescued by the national director of Priests for Life and taken to the U.S. for treatment.

Thirteen-month-old Joseph Maraachli, who is currently kept alive by a respirator and was recently denied a transfer to a Michigan hospital to undergo a tracheotomy, arrived in the U.S. early Monday morning with Fr. Frank Pavone and other Priests for Life staff.

“Priests for Life staff toiled through the night for many nights, working in concert with dozens of people to make this possible,” Father Pavone said in a statement. “Now that we have won the battle against the medical bureaucracy in Canada, the real work of saving Baby Joseph can begin.” . . .

“The medical board overseeing his case is apparently convinced that giving proper care to ‘Baby Joseph’ is futile,” the [Priests for Life] website reads. “They don’t mean that the medical care won’t help him. They mean his life in its current condition isn’t worth the trouble.”

(The patient was not “denied a transfer” by his current hospital – a hospital in Michigan was contacted, reviewed the case, and refused to initiate futile treatment, just as the current hospital has done. And note that nobody is going to “save” this patient – he is dying, and even his family recognizes that. Note also that “the medical bureaucracy in Canada” are the ones who have kept the patient’s body alive this far, and were still doing so at least as of last night. And, finally, note that nobody has said, and surely nobody believes, that caring for this patient “isn’t worth the trouble”; what they mean is in fact precisely that the requested care – a debilitating intervention prolonging a hopeless case for an unconscious patient – “won’t help him“. The loathsome Pavone is deliberately inflaming the issue to grind his personal axes regarding termination of treatment and universal healthcare. As in every case of futility, the problem here is that the further treatment the family is demanding won’t do any good, but doing no good is pretty much Pavone’s mission in life, so it was inevitable he’d insert himself and start shooting his mouth off.)

The case is, sadly, another familiar example of a fairly common clinical tragedy, in which a family, for emotional or religious reasons, wants an outcome that may not be possible or optimal, and right-wing ghouls descend to distort the facts and make use of the family’s tragedy for their own religious and political ends. Predictably, Michael Schiavo Bobby Schindler has gotten aboard, still complaining about the case of his sister Terri Schiavo and making wild accusations, and the usual range of suspects is also clamoring for attention.

Before moving on to the larger implications of this otherwise ordinary case, however, it’s worth giving some thought to what is actually going on here, and trying to understand the interplay of interests and moral principles that are relevant.

Reasons for Refusal of Treatment

Almost the only information available about the case has come from the family, their lawyer, and the media-hungry agitators who are making it a political issue, so it is very hard to know what the actual facts are. But the case does seem unmistakably to be one of medical futility: the patient has no hope of recovery, further treatment will offer no change in his clinical condition, and the treatment demanded imposes costs and burdens without hope of changing the overall clinical course. Under these circumstances, the hospital recommended termination of treatment, and when the family refused the hospital waited a certain period and then moved to terminate treatment under a futility doctrine. I don’t know the exact terms of such policies in Canada (or whether they fall under national, local, or the hospital’s own authority), but in broad brush this is a familiar course of events.

The reasons for termination of futile treatment should be obvious, but are worth rehearsing again: Inevitably in such cases, there are accusations that the hospital is doing this “for the money”. (This is especially popular among American right-wingers when the hospital operates under a governmental single-payer system, as in this case. But of course US hospitals, for-profit or otherwise, are equally budget-driven, and nobody ever stops to mention the millions of Americans who never get into this situation because they simply have no access to care in the first place. But if red herrings were outlawed, there wouldn’t be a right wing at all . . .) Certainly financial resources are an important consideration – every dollar spent doing no good in a hopeless case is a dollar not spent helping a patient who could benefit. But conflicts over futility are not necessarily, or even mostly, triggered by financial considerations primarily; other resources can be equally or more important: a vent-dependent patient is taking up a ventilator, which is an expensive piece of equipment in limited supply, as well as an enhanced-care or ICU bed, nursing staff, and a part-time respiratory technician, all of which are likewise expensive and stretched thin in most hospitals. Regardless of financial issues, all this represents resources that other patients may need, and which at busy times may mean the difference between life and death for someone who could benefit in a tangible way from resources being used to provide no tangible clinical benefit to a vegetative patient. In some cases, families demand literally unlimited care for patients who can experience no benefit at all. In addition, if a given treatment is literally futile, continuing to impose that treatment may be a harm to the patient (since almost all treatments cause some degree of disruption or discomfort, and in the case of futile treatments this is not justified by any expected benefits). Clearly, limits have to be set; it seems just obvious that limiting treatments that are actually futile would be the first and least objectionable place to start.

In this case, the family does seem resigned to the fact that the patient’s case is terminal. What they are asking for is – apparently – not a miracle cure but the opportunity to care for the patient at home for as long as possible before he dies. This is more realistic than in some of these cases, and you can sympathize with the family’s desires. It’s reasonable to ask why the hospital objects, since the intervention needed to facilitate this request is not difficult to perform, and the patient would then no longer be taking up a hospital bed. Because the case has been so poorly reported, it is not clear exactly what the hospital is thinking, or why they oppose a terminal discharge to the patient’s family’s home. But it appears to me there are two issues at hand:

First, although the patient would be leaving the hospital, he would still require extensive outpatient services. The news stories do not bother to mention this, but he cannot “just” get a tracheotomy and go home – since he’s vent-dependent now, he’s not going to develop spontaneous respiration just because he’s got a hole in his throat. The tracheotomy is preparatory to placing him on a portable ventilator, which he will remain on until he finally dies. It’s easier to manage a home ventilator with a trache than with an endotracheal airway, but he’s still going to be vent-dependent for the rest of his life. As such, he will also need nursing and respiratory care, and physician oversight. Some of this can be managed by the family, but the patient will still need considerable resources from the local health authorities. It is possible that the hospital regarded this – equally clinically futile – care as an unwise use of resources, whether or not the patient was still hospitalized. Second, as the hospital notes, a tracheotomy is an invasive procedure that does significant damage to the patient’s airway, and in this case will provide no overt clinical benefit. Although this might allow the patient to go home, and that seems on its face to be a good thing, it’s important to remember that the patient himself is not going to experience any benefit from that. If this patient is truly vegetative, he is not going to be consciously aware of anything that happens, including whether he is at home or in a hospital. Sending the patient home – as natural as that seems – is purely for the family’s benefit in terms of any conscious experience any of them might gain from this. It seems to me that the hospital might be taking the line that the trache procedure cannot be justified on these grounds because it is not for the patient’s own personal benefit; the family, however well-intentioned, is clearly asking for a surgical procedure for this patient for reasons of their own – a request that directly violates the most basic accepted principles of decision-making for non-autonomous patients (i.e., that the decision-maker must act for the patient’s benefit alone, and especially not for their own benefit). This second consideration looms large: because this is a congenitally neurologically damaged infant, there can be no question in this case of “what the patient wants”, or even “what the patient would have wanted” (since the patient in this case has never, and apparently would not ever have, wanted anything). And given that the patient has no conscious experiences, good or bad, anything done in this case can only be to gratify other parties’ wishes (the family’s, and increasingly those of the growing crowd of right-wing religious agitators who continually turn these cases into fodder for their cultural jihad).

Viewed from these two perspectives – that continued intensive home care for a terminal, vegetative patient is equally as futile as continued hospital care; and that the family’s request for a surgical intervention in order to take the patient home with them is motivated by their own emotional needs, not an anticipated benefit to the patient -  the refusal of the family’s request not only makes more sense, but would in fact have to be regarded as correct, barring other factors that haven’t been made clear.

[Note: there are some factors of the case that aren't clear, and make it harder to figure out what all is going on here. First, the article at top says the hospital did, late in the game, state that the patient could go home without a tracheotomy. This doesn't change the fact that continued intervention is futile, but it weakens the objection regarding non-beneficial treatment (the tracheotomy). Futility doctrine has not generally been taken to the point of forcing families to terminate treatment if an alternative could be found; it's not clear why, if they could discharge the patient without surgery, they didn't do so. At the same time, today's intervention - transferring the patient to another hospital in a different country - also does not accomplish the family's goal of taking him home with them. It may be that they decided they would rather seek continued life support in a hospital setting if they could not get the home-care option they preferred, but that makes the case a more typical futility scenario of a family demanding open-ended treatment that produces no clinical benefit, rather than one of them just seeking help in finding a more congenial terminal setting. Interestingly, both of these developments minimize the significance of the tracheotomy as the sticking point in the case (unless he's going to get a tracheotomy in the US, and then go back to Canada to die, which would create a complicated administrative conflict - are Canadian providers obligated to pay for after-care for procedures in foreign countries that they had previously refused to authorize at home?). With so much unexplained about the case, it's hard to know how or why any of this is happening.]

Alternative Considerations

For the same reason that the tracheotomy will not benefit this patient, however, it should be noted that it will not severely harm him either. Ventilator dependency is uncomfortable, and a tracheotomy generally destroys the patient’s larynx, making it impossible for them to talk. But, since this patient – if he is truly irreversibly vegetative – cannot feel or speak anyway, those are not major issues. The patient is not going to experience any conditions, at home on a vent, worse than he currently experiences in a hospital on a vent (which is to say, nothing at all). This suggests – again extrapolating from the vague descriptions in newspaper stories, mostly from very biased sources – that the objection to the tracheotomy, though properly based on considerations of preventing the imposition of unbeneficial harmful procedures on the patient, may be overstated; this procedure may be futile, but it would not be a harm that the patient was actually conscious of.

Given that observation, the objection that the family is acting out of their own interests is likewise well-taken but perhaps rather formalistic: they are not acting strictly in the patient’s interests, but the patient has no (consciously felt) interests and can (consciously) experience no harms, so what is gained by insisting on strict adherence to that principle here?

At this point it is also meet to introduce the question of subjective benefits of treatment. Throughout the discussion above, I have been careful to focus on “clinical changes” from treatment, and “conscious experience” of benefits and harms. These are the objective consequences of treatment: actual changes in the patient’s clinical condition as determinable by examination, and the actual experience of and reaction to events by the patient themselves as consciously felt by them. I have been careful not to specify what clinical changes actually constitute a benefit, and I have avoided the question of subjective benefits that might conceivably accrue even to an unconscious or vegetative patient. But it’s fair to acknowledge that some people might regard clinically futile treatments – treatments that do not produce a significant change in the patient’s clinical condition – as beneficial, if they serve non-clinical interests the patient may have. Some patients have a personal or religious desire to live as long as possible, regardless of clinical condition; this is valid where it represents an authentic desire of the patient. (It is in no way mandatory, still less anything that religious reactionaries can be allowed to impose against a patient’s will, as in the Schiavo case and so many others. And of course the mere existence of that desire does not constitute an obligation on anyone else to provide the resources to fulfill it.) Some patients may want to die at home rather than in a hospital; some may want to meet specific goals in life (live to see a meaningful event in their lives, spend time with their family before the end, wait to have final meetings with friends or family members, etc.). And some may have religious beliefs about the right way or right time to die. All these may require continued treatment in otherwise clinically hopeless cases, and they are certainly valid interests of some patients that can be met through continued treatment. It is important to remember that all treatment – whatever its clinical consequences – is valuable only because it serves some interest of the patient; the clinical impact of any treatment – however great or minimal – means nothing except in the light of what the patient themselves wants. And so, clinical treatments can only truly be considered futile if they fail to serve the goals of the patient in seeking treatment, not simply because they do or don’t produce a cure or any other particular clinical outcome. This consideration is meliorated in the Baby Joseph case by the fact that the patient himself, as noted above, holds no such desires. But we should remember that it’s too simplistic to treat “futility” as simply a matter of clinical efficacy in a technical sense.

Summing Up

Given the considerations above, and reading between the lines of the news reports a bit, the situation seems sad and confounding, but far from a scandal. That hasn’t kept the vultures from whipping up their usual “death panels” frenzy, of course, but we don’t have to play along.

The family wants to bring their child home to be with them; possibly also they want to prolong his life as far as possible regardless of his condition, but that part’s less clear. Either way, it’s easy to understand, and perhaps sympathize with, their wishes. But we must also realize that this is their desire, arising from their own needs and interests; it cannot be an individual desire on the part of the actual patient. This is not to accuse the family of being uncaring or manipulative; no doubt their desire is to care for their son the best way they can, which means as closely a part of their family as they can manage. It’s just that, in the nature of things in this case, that desire cannot arise from or be shared by the son himself, and so the family’s sincere desire to provide the best possible treatment runs up against the facts that this patient cannot expect any overt clinical benefit from prolonged treatment, and cannot form or hold any personal, subjective values or goals that would be served by continued treatment. Thus, the family’s plans do not actually serve the patient’s own, personal good, no matter how sincerely they intend to do so. (Note particularly that the religious value some place on prolongation of life cannot be an issue in this case, since the child has no religious – or any other kind of – beliefs of his own.)

The hospital wants to minimize the expenditure of clinical and financial resources without benefit (on an inpatient, and possibly also an outpatient basis); in this case continued treatment of this patient will produce no clinical benefit other than prolonged stasis in a vegetative state. The hospital also apparently objects to performing an invasive procedure on a non-consenting patient with no hope of clinical benefit, in response to a third party’s wishes – though here also their precise reasoning is less clear. Since the patient has no personal desires to be accommodated, the issue of possible subjective benefits from clinically futile treatment does not arise. Thus, the hospital is acting in keeping with obviously reasonable priorities and well-recognized principles of patient autonomy, and is not acting contrary to the desires or interests of the patient himself.

In light of this balance of interests and principles, the hospital’s objections to continued or increased treatments in this case are not unreasonable. Even so, given that the patient cannot suffer conscious harms by more-aggressive intervention, it may seem that the hospital is being unnecessarily nit-picky. It may seem reasonable that, even though the patient cannot benefit overtly and has no desires regarding possible subjective benefits, it might be reasonable to “give the family the benefit of the doubt” and let them do what they want. The problem with this is multi-fold: (i) it establishes a principle whereby unconscious patients without advance directives can be treated whatever way someone else wants, for the other party’s benefit – thus voiding the established consensus on substituted judgment; (ii) it elevates parents’ religious or personal beliefs above patient interests for minor patients – an already-contentious issue in decision-making for children by parents; (iii) it would essentially void the entire concept of medical futility by making virtually any articulated desire by family members (or other third parties) a sufficient ground for prolongation of treatment no matter how hopeless (and it is easy to suspect that this is in fact the goal of the right-wing interlopers who have jumped on this case). Even if we are tempted to void ethical principles in this case, where it seems there are few or no direct interests of the patient at stake and the patient has not expressed any prior preferences that might be violated by continuing treatment, and even if we are willing to disregard any questions of competing priorities or limitations on resources (which the hospital understandably is not), agreeing that principles can be voided, and resource limitations should be overlooked, is a dangerous step when so many such cases arise, and especially in the face of a coordinated movement to hijack patient-centered care for religious and political reasons.

Further Observations

One feature of this case that does call out for sympathy is the obvious concern of the family for their son. And this is common in many such cases, not only involving children but dependent adults, elders, and others. It is understandable that in these cases the family’s interest in soothing their own feelings is not distinct from, but to a large degree indistinguishable from, their love for the patient and their desire to do the best for that patient themselves. It seems cold to insist – even if technically true – that taking a family member home to die does not serve that patient’s own interests (because, as cognitively diminished, they may have none). I am tempted to speculate about a possible limited exception to the rule of substituted judgment in the patient’s interest: in cases where the patient has literally no countervailing interests of their own, is it reasonable to allow decision-makers (specifically, family members) to act for their own interests in relation to the patient, by bringing them home to die or maintaining life support for non-suffering patients even when there is no hope of cure? The dangers seem to me significant, and the possibility that such exceptions would be further misused by political interests almost inevitable. Still, it’s worth thinking about in cases like that of Baby Joseph: where the family is clearly acting out of love for the patient, but not in the patient’s interests, would it be wrong to indulge their desires if it at least doesn’t harm the patient?

Worth discussing, perhaps.

UPDATE: Fixed mistake in the name of Terri Schiavo’s brother, Bobby Schindler. Thanks to Barry in comments.

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

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

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

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

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

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

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

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

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

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

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

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

It is.

Thanks, Penn.

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