Philip Alcabes discusses myths of health, disease and risk.

Bodies Using Bodies

Larissa MacFarquhar’s article on kidney donation in the July 27th New Yorker reminds us that our society remains uncomfortable about the satisfying of bodily needs by making use of other people’s bodies.

This is a good discomfort, no?  Nobody should blithely take advantage of another person, coercing him into donating his organs or making use of her for sexual pleasure without consent.  Watching Stephen Frears’s 2002 film Dirty Pretty Things leaves you appalled and angry at the kidneys-for-passports trade, as it must.  Slavery is an outrage and an offense, a rejection of the values that make ours a civilized society.   Every thinking person decries the trafficking of women for sex.   In modern society, it feels wrong when one person’s body is used to  advantage another’s body.

The exchange of money in the process seems to change the moral valences without exactly alleviating the discomfort.  That children’s families are paid for their manual labor in processing cocoa for the chocolate we eat doesn’t make the practice of child forced labor seem less heinous.  Maybe we even boycott chocolate manufacturers who use chocolate from Ivory Coast, where child labor is involved.  Taking advantage of children’s bodies disturbs us (even to the point of limiting our chocolate purchases).

Money registers differently when it comes to adult sexual exchange.  In the usual American view, there is a bright line between sexual enjoyment obtained through the use or threat of force, and the same enjoyment procured by payment but without force.   Both forcible rape and prostitution are illegal, but most people would recognize a distinct difference between the moral repugnance elicited by rape and the tinge of moral corruption carried by sexual advantage obtained by payment.

Payment introduces a legal twist to sex, too:  the law holds the man who procured sexual advantage through force to be culpable in the act of rape.  Yet, when it comes to paid sex, the legal code holds the woman who provided the sexual service accountable.  The bluenose might scorn both the sex worker and her client equally, but the law makes a distinction.

By contrast, payment makes all the difference when it comes to the use of someone else’s body for productive manual labor.  Your neighbors would be repelled if you were to use force to make a passer-by reshingle the roof of your house, and might have you arrested.  But they aren’t bothered when you hire a roofer.  Most aren’t very bothered when the roofer has some immigrant laborers do the scut work for below-minimum wage — which seems someplace in between a true fee-for-service contract (you in need of a new roof, a roofer able to build one) and slavery.  When money changes hands, it softens the moral impact of making use of someone else’s body.

But the moral flavor doesn’t disappear.  If your roofer refused to let his immigrant workers come down off the roof during a lightning storm, his meager payments to his workers would feel less important than his endangering their welfare.   In other words, onlookers would still be moved by the moral flavor involved in making use of someone else’s body.

Now for the tricky part. What about the use of others’ bodies for medical research? An article in today’s Times laments the shortage of willing bodies for testing cancer treatments.  Contemporary medical ethics presupposes a human trait called “autonomy” and requires that researchers respect this characteristic – for instance by refusing to experiment on a person unless she has signed a consent form acknowledging that she agrees to be experimented on and asserting that she understands the risks and rewards involved.

Of course, the reward system is often obscure, no matter how verbose the researchers are in the process of obtaining consent – in part because it’s often hard to predict who will benefit if new treatments are deemed to be effective, in part because it’s often hard to know how effective a treatment is likely to be, and in part because a big chunk of the benefit accrues to the researchers (articles published, grants funded, awards won) and the research industry (grant funding justified, administrative costs rationalized).

Nobody would accept a system in which people are forced to become medical research subjects.  In fact, the discoveries at Nuremberg about forced participation in medical experiments during the Second World War gave the impetus to the modern field of medical ethics.

But how much does it change the moral outlook if you are rewarded for allowing your body to be used by medical researchers with a cash payment?  The researcher has to be able to claim that her  subjects are not forced to participate – and the medical ethicists who are attached to the autonomy concept will still worry that the subject’s decision to lend his body for research will be coerced, not free and autonomous, if the payment is too grand.

For some classes of people, including children and addicts, payment is deemed to be especially coercive.  The thinking being that if the researcher were to offer $100  to an addict, the addict would use it to buy dope, and that would be harmful, and therefore the researcher would be doing a bad thing even though her research was really meant to do good.   Physician researchers always need to feel that they’re doing a favor to society (not to themselves).

Meanwhile, others decry payments that are too small, arguing that time, angst, and (sometimes) physical or mental suffering involved in being a research subject ought to be reimbursed at respectable rates.   Although the idea of a professional workforce of permanent research subjects, who might receive a retainer in return for surrendering their bodies and tissues for research, rubs physician researchers the wrong way.

Our society really likes medical research. We don’t want our doctors to stop looking for ways to help us to live longer and more comfortably.   Bodies must be used, but they shouldn’t be used without consent, they shouldn’t be purchased outright (that would be slavery), they can’t be paid too much, they shouldn’t be paid nothing, they shouldn’t be recruited for research use in perpetuity or receive the sort of ancillary benefits of employment that professionals get, and they should preferably not be “vulnerable” (young, developmentally disabled, imprisoned, or pregnant).

Which brings us back to kidney donation.  Should kidneys only be allocated anonymously and through a universal system that provides kidneys in accord with a complex algorithm that takes account of the likely benefit of the transplant?  Should there be a federally controlled market in kidneys, or at least some system that encourages donors through market-value incentives (like tax breaks), as Sally Satel has advocated?  Should there be a fully open market through which you could purchase the organ you need from a suitable and willing donor?

The conjunction of bodies-in-service-to-other-bodies and dollars makes the kidney question — like sex work, child labor, and medical research — fraught with moral meanings.  Simple solutions won’t serve.

The Preacher at CDC

Just weeks into his tenure as CDC Director, Dr. Thomas Frieden is already preaching moral improvement to the American public.

Yesterday, according to an Associate Press report, Frieden sermonized that “obesity and … diabetes are the only major health problems that are getting worse in this country, and they’re getting worse rapidly.”  Now, Dr. Frieden heads the agency that collects data on illness and calculates disease rates; presumably, he knows that many conditions are either increasing now or have risen to high levels from which they have not retreated — MRSA, Lyme disease, injuries in certain occupations, and foodborne illness, to name just a few.

But as Dr. Frieden’s campaigns in New York City against trans fats, unprotected sex, and TB sufferers who didn’t take their meds  revealed, when there is a moral battle to be fought the facts just get in the way.

The impetus for yesterday’s obesity sermon was a study by investigators at RTI who had determined that “obesity-related diseases” account for over 9 percent of U.S. healthcare costs.  Most people who suffer from most of the so-called obesity related conditions are not actually obese.  Even diabetes, the one most commonly associated with obesity in the popular mind (and, apparently, Dr. Frieden’s) occurs more often among people who are not and have never been obese than it does among those who are obese.  So the study was really showing that obesity accounts for much less than 9 percent of healthcare costs.

But that wasn’t the only problem.  While the RTI study found that obese people spend 40 percent more than comparison “normal” people on health, most of the increase in spending was related to pharmaceuticals.  So one might ask if it was obesity that was increasing expenditures, or the price of certain drugs.

Furthermore, there’s no way to know whether being fat was causing the obesity group in this study to be sick in ways that cost more money, or if they were fat because they were unwell in the first place.

In fact, the study wasn’t designed to test whether becoming obese led to an increase in medical expenditure — which might have shed some light on the question of whether obesity causes higher costs.  Many people in the study had no  expenditures at all for certain types of healthcare costs.  But the researchers weren’t interested in finding out whether obesity sometimes costs nothing at all, so they used an adjustment technique to allow them to relate obesity to predicted expenditures.

Finally, the estimate of percentage of total healthcare costs attributed to obesity-related expenditure was based on the assumption that obese people who return to “normal” weight suffer no consequences of their weight loss — an assumption that is well known to be false.

So it’s a falsehood to state on the basis of the RTI findings that obesity is accounting for a tenth of American healthcare costs — although AP, Reuters, and other media outlets so claimed in covering the Frieden sermon.

In fact, a lucid assessment of the findings would ask why, if obesity is supposedly up 37% among Americans and if two-thirds of Americans are now overweight or obese, obesity would account for only 9% of costs?  Surely if obesity is so bad, increasing its prevalence by more than a third would be swamping the healthcare industry with fat people.

But the whole appeal of a sermon is that it isn’t based on fact or lucid assessment of the present reality. It’s based on suppositions about the future with a steadfast moral foundation.  Frieden has the supposition and he has the moralism.  His religion is that it’s up to the “community” to perfect itself.

As Shirley Wang at WSJ Health Blog reports,  Dr. Frieden believes that  increasing availability and decreasing price of healthy foods, while decreasing availability and increasing  price of unhealthy ones, “is likely to be effective.” He claims that the decision to adopt such a strategy “is a political one.”

But of course it isn’t political in its essence; it’s moral.  When the community is told to perfect itself it rises to the occasion by looking to the usual moral suspects:  women, especially pregnant women or mothers; the uneducated; the poor.  Last fall, Frank Furedi discussed the moral underpinnings of British authorities’ removal of fat children from their parents’ homes.  And we can hope he’ll have something to say about what’s happening in the U.S., where the community policing can be even worse:  a few days ago, a South Carolina mother was arrested and charged with neglect for having a son who weighs over 500 pounds.  Other states have contemplated other methods of dealing with parents who violate the community standards of parenting.  Not by hitting their kids, starving them, or forcing them to work — but by allowing them to get fat.

Obesity is offensive, it seems, in just the way that sexual license and intemperance with alcohol have been found offensive by some.  And just as the problem with sex and drinking has been found in the environment — in “peer pressure,” the “latchkey phenomenon,” TV advertising, Hollywood, and the decline in “family values” — so it is with obesity.  “We did not get to this situation … because of any change in our genetics or any change in our food preferences,” Frieden adumbrated.  “We got to this stage of the epidemic because of a change in our environment and only a change in our environment again will allow us to get back to a healthier place,”

It isn’t obvious what to do when appetites produce offense — so it’s handy to claim that the environment is at fault and then to hand the problem to public health.  Because for certain health officials, it’s always clear what to do:  Take the moral high path, clean up the offending elements, urge the community to police itself better.  If more parents are arrested… well, perfection has its price.

Risk, Opportunity, and Care

We’re off this evening to Ukraine and Poland, for a trip involving family heritage and some literary-historical exploration (as well as visiting with friends).

The CDC’s travelers’ health website recommends vaccination against typhoid (as well as hepatitis A and B, and routine childhood immunizations) for travelers visiting small towns and villages in Ukraine.  Since we expect to be doing exactly that, we opted to be immunized.

Picking up the oral typhoid vaccine at a pharmacy in the Bronx made us reflect on inequities in health, and inequalities of opportunity.  How odd, to stand in an air-conditioned pharmacy on a busy street in New York City and prepare to fortify oneself against a disease that, here, we consider of historical interest.  Typhoid makes us think of the sad episode of Mary Mallon, the infamous typhoid carrier, and the struggles of Almroth Wright to develop a vaccine that would limit the terrible toll that typhoid took on British troops in the Boer War.  All a very long time ago.

That typhoid is still a public health problem in much of the world attests to real differences in opportunity.  Clean drinking water, and the sanitary systems that allow water to stay clean, being aspects of opportunity.

The American conversation about health uses the grammar of risk.  Our health professionals talk about the possibility that illness will ensue if people persist in some behavior (smoking, inhaling others’ cigarette smoke, using certain pharmaceuticals, driving while intoxicated, etc.), if authorities fail to inform, if vaccine isn’t produced on time.  But a sense of scale is lost.

Flu preoccupies the risk conversation right now, for obvious reasons having to do with the current outbreak of H1N1 influenza.  The risk conversation sometimes appeals to the terrible pandemic of 1918, the worst single-strike disease outbreak of all time.  But it doesn’t often recall that, in the United States, the 1918 flu spared over 99% of the population.

The talk of risk, the sometimes-lurid conversation about what might happen, almost always occupies itself with the tiny tail of the broad distribution of health – the minuscule proportion of the population that, even in a frightening outbreak, actually dies from it.

What’s left out is the real situation that confronts most people, most of the time.  Not the sudden outbreak, but the persistent struggle to stave off more mundane problems that rarely appear in the media.

Junkfood Science this week reminds us to keep the care in health care.  Care seems relevant here.  The risk conversation gives us clues – sometimes valuable ones – about how to diminish somewhat the number of people who are sickened or killed by a threat, like flu.  But to really get at people’s health – to offer a more thoroughgoing and humanistic form of care – will mean moving past the narrow conversation about risk, and asking about opportunity.

It isn’t risk that keeps most people from achieving capabilities — from escaping poverty, living comfortably, or being free of disability.  It’s more usually bad water, bad food, or just bad government.  A broader and more effective health conversation would start with the conditions of living, and not be preoccupied with the risks of illness alone.

The Agony of the A.M.A.

Sam Stein at Huffington Post comments on the American Medical Association’s latest attempt to (as he puts it) torpedo health care reform by opposing any government-sponsored insurance plan.  The AMA’s announcement was reported Wednesday night in the NY Times.

At DailyKos, doctoraaron explains why he is resigning from the AMA, and is participating in Physicians for a National Health Program.  And DemFromCT notes the high public support for reform, provided it’s affordable.

The AMA is already catching flak for sounding like, well, a bunch of doctors interested only in preserving physicians’ privilege.  Of course, that’s what the AMA is – it’s a trade guild, and (it thinks) it’s doing its job.  The only surprise – especially given how many physicians are firmly behind reform of health care financing — is that the organization is so willing to be so open about being so neanderthal.

The AMA’s statement sounds to us like the organization’s dying gasp.  It’s standing up for a vanishing version of what it means to be a doctor.

In fact, the history of the AMA’s own stance toward social insurance is revealing.  In The Social Transformation of American Medicine, Paul Starr explains that until the 1930s the AMA didn’t like the idea of any medical insurance at all — it was fearful that physicians would fall under the sway of the public health establishment if social insurance were instituted and under the control of insurance companies in the case of private insurance. The AMA has always been more worried about doctors losing control over their own practice than about financing.  Patient care isn’t the AMA’s job, and never has been.

Why social health insurance failed in the U.S. is a complicated story.  It involves ideology, of course, but it’s inflected with plenty of nuance:  the troubled relation of labor unions to American industry, the not-so-troubled relation of industrial corporations to the American political establishment, political favor currying, the rise of scientific medicine, the entire question of whether there should be insurance for medical care.  Through it all runs the AMA’s devotion to the image of the physician as independent decision maker.

The reason for the AMA’s death agony today is that it’s defending a dying species.  Physicians don’t get to make independent decisions much.  And the backward-looking AMA isn’t showing any interest in forward thinking about the positive roles that doctors could play in a really care-centered set-up.

The business of doctoring, which was once a trade that pitted physicians against herbalists, apothecaries, surgeons, patent-medicine hawkers, faith healers, etc., competing for access to Americans’ bodies, has become just a trade, once again. Only now, it’s not that physicians are competing with snake-oil salesmen — it’s that the business of caring for Americans’ health is no longer managed by a medical professional working one-on-one with a patient.

That individual suffering isn’t the main focus of the big, costly healthcare system is well known to anyone who has sought diagnosis of a troubling condition or relief from chronic problems.  That physicians are themselves just cogs in the system isn’t so obvious — until you listen to them talk about their own frustrations.  They wish their practice could be driven by patients’ needs or, at least, by evidence on what treatments work best.  But often the control is exerted by the institution, and by insurance companies’ policies on pricing and payout.

The AMA is still fighting for the vanishing breed, though.  Someday soon, the AMA will have to disband because its constituency, the exalted independent physician, will have become extinct and the organization will have failed to recognize just what the rest of America — including most physicians — wants.  Meanwhile, don’t be surprised to hear its dying gasps.

ADDENDUM:

Just saw Abraham Verghese’s “To the AMA:  It’s Not About You” post at Atlantic magazine today.   He urges the organization, “please don’t tell the American public (a public already disenchanted with physicians and health care) that you are doing this for their benefit because of your great concern for the patient. The public does not believe you. They aren’t that naive.”

Does Health Mean More Than Avoiding Risk?

If our society is going to be  healthy population it will mean making everyone healthy.  Self-evidently we’ll also have to think about what it means to be healthy.

Often, we do think about this – but usually by considering what the risks are and how to avoid them.  That means, we ask whether we can make life less harmful by changing something, and then we ask what change to make (and what it will cost).

Rarely do we ask: what sort of health do we expect – especially if we also have to accord that level of health to everyone?

There’s something about the risk question that goes against the concept of health for all.  Almost always, the risk we talk about pertains to us:  what can we affluent, educated people in the U.S. do to make sure we don’t get sick (or die) tomorrow? It’s not very often that we ask about risks for people who can’t get the recommended exercise or eat the recommended fruits and vegetables because they have kids and no job.  Not too often that we are concerned about the risks of medicating adolescents (see below) for people who can’t make such assessments because their kids are incarcerated.  When health = avoidance of risk, we mean “health for people like us.”

Not that the risk question is frivolous.  It gets particularly poignant when it comes to children.  For instance, Liz Borkowski posted a valuable note at The Pump Handle last week about the use of antipsychotic drugs for children.  She was commenting on a post by Alison Bass that was concerned with “shilling for Big Pharma,” about the death of a 12-year-old Florida boy who was on several medications.

Whether the world we’ve made is dangerous to our kids is a question that can’t be ignored.  But we also have to remember that it’s only one side of the story, and it’s only part of that one side (the part that pertains to people like us).

Often, we hear a plea for a deeper conversation about health.  It’s what we are hearing when parents of autistic children ask about vaccine safety, or others ask whether the prominence of the autism epidemic is going to translate into better treatment for autistic adults (as Karl Taro Greenfeld did in “Growing Old With Autism” in the NY Times, 23 May).

It’s what we are hearing when parents of troubled children allege that pediatric bipolar disorder is underdiagnosed or when others argue that it’s overdiagnosed.

These voices aren’t talking about risk; they’re speaking in a different register.  They’re talking about suffering, and the alleviation of suffering, and asking what sort of responsibility the society (or the state) is going to take.

Too often, we can only hear the risk part, not the alleviation-of-suffering part.  We react to the allegations that vaccines cause autism, for instance.  Some people are attracted by the lure of an easy-to-blame culprit (vaccines or other products of Big Pharma, immunization guidelines or other policies of Big Medicine) and join the bandwagon; others are repelled by the anti-immunizationists’ failure to venerate Big Science, and ridicule the parents who don’t want their kids vaccinated.  But not too many people interpret what they’re hearing as a cry for more caring, rather than a demand to identify risks.

In the health professions, we’re especially given to hearing such claims in terms of risk, rather than health-vs.-suffering.  For instance, we take notice when (as Sarah Rubinstein points out at WSJ Health Blog), the pharmaceutical industry talks about having a role in the conversation over the costs of health care  as the WSJ reported on 26 May.

But the reason we’re interested is often because we want to debate how to structure the healthcare industry rather than because we really want to discuss how much caring there should be in healthcare.

This isn’t a matter of idealism or some kind of touchy-feely hippie alternative to industrialized medicine.  It’s a real, and realistic question.  No rational person wants to give up effective medication for people who are suffering, or wants our society to stop doing research that would tell us if certain drugs might be harmful.  But to think only about the risks and not about the suffering part is to blind ourselves to the more difficult – and more essentially human – questions about health.