Henrietta Lacks died of cervical cancer in the “colored” ward at Johns Hopkins Hospital, in 1951.  From samples of her cervical tissue, the immortal cell line called HeLa was developed (by Dr. George Gey, at Hopkins).  Skloot’s story covers the family’s travails before and since, but also digs deep into the problem of race in the business of American medicine.  Her account challenges, or should move us to challenge, the smug certainties about our supposedly post-racial society, and the convenient formulae about “informed consent” and “access to care.” I guess I should say, The Immortal Life should make us ask just what “care” means in today’s system.

Henrietta Lacks and her family members were almost never taken seriously as humans with real problems.  First, they were poor and uneducated black people from tobacco country relocated to Baltimore; then, they were the bearers of the same genes as a woman (Henrietta) who had died of a remarkably aggressive, and therefore medically interesting, cancer; later, they were background and local color to the story of the origin of the thriving, and therefore scientifically interesting, HeLa cell line.

To Skloot’s credit, she’s taken to heart, and acted on, the problem:  she founded the Henrietta Lacks Foundation to help raise funds for education and medical expenses for Henrietta Lacks’s family.  Skloot’s blog, Culture Dish, carries updates about some of the achievements of the foundation and sometimes takes up issues germane to the book, especially regarding personal rights to genetic information (here, for instance).

It’s also impressive that Skloot interweaves in her narrative (and takes up more fully and explicitly in an Afterword) the vexing question of ownership of tissue samples.  She highlights how the expanding capacity to extract information from genetic sequencing ups the ante on the questions of privacy of tissue samples — since it’s now possible to ascertain potentially identifying information from genetic sequences even in a sample from which the usual verbal identifiers (name, address, and so forth) have been removed.  And she asks how the profits potentially available from exploitation of new discoveries should be shared.

The intersection of these problems with the matter of race makes The Immortal Life of Henrietta Lacks, like James Jones’s Bad Blood and Harriet Washington’s Medical Apartheid, a book that should be required reading for everyone involved in the health sector today.

May CDC become a force for real public health, not an advocate for the risk-avoidance canard.  May the new director, Dr. Frieden, stop favoring pharmaceutical companies’ profit making through expansion of immunization.  And may he direct the agency to begin to address legitimate public needs, like sound answers about vaccines and autism, and clear communication about what is — and isn’t — dangerous about obesity.

May WHO officials stop playing with the pandemic threat barometer.  May WHO begin demanding that the world’s wealthy countries devote at least the same resources to stopping diarrheal diseases, malaria, and TB as they do to dealing with high-news-value problems like new strains of flu.   Diarrheal illness kills as many children in Africa and Asia in any given week as the 2009 swine flu killed Americans in eight months.  So does malaria.   Direct policy, and money, toward sanitation, pure water free of parasites, adequate treatment of TB, mosquito control, and prevention of other causes of heavy mortality in the developing world — not just flu strains that threaten North America, Europe, and Japan.

May public health professionals lose their obsessions with bad habits. May the public health profession return to the problem of ensuring basic rights — access to sufficient food, clean water, decent housing, good education, a livable wage, and adequate child care — and ease up on its moralistic obsessions with nicotine and overeating (for recent examples of the preoccupation with tobacco, see this article or this one (abstracts here; subscription needed for full articles) in recent issues of the American Journal of Public Health).

May science be what Joanne Manaster does at her incomparable website: looking at the world with wonder, asking without dogmatic preconceptions how it works, and accepting that its irrepressible quirkiness makes it impossible to know the world perfectly.  May science not be the crystal-ball-gazing thing whose so-called “scientific” forecasts are really doomsday scenes worthy of the medieval Church — predictions of liquefied icecaps and rising seas,  hundreds of millions of deaths in a flu pandemic, or catastrophic plagues sparked by people with engineered smallpox virus.  There are plenty of reasons to be concerned about both the environment and disease outbreaks based on sound here-and-now observations; leave the forecasts of Apocalypse to the clergy, who know how to handle dread.

A new year’s wish (from the valedictory exhortation in Tony Kushner’s Angels in America):  “More life!”

Joshua Holland’s post at AlterNet yesterday tries to explain why H1N1 swine flu shouldn’t be cause for hysteria.  He puts this outbreak in the context of flu history and the threat posed by other, more harmful, conditions — malaria for instance.  Holland plays a little bit fast and loose with the numbers:  it probably isn’t accurate to extrapolate, from the number of confirmed flu deaths so far, to get a total number of deaths that will be caused by the swine H1N1 strain this year — more efficient spread in the  cities of the Northern hemisphere in the coming few months is likely to produce fatalities at a higher rate than the more sporadic outbreaks here in April and May.  And he’s overly critical of the media — a point brought out by Revere in a response to Holland at Effect Measure today.

But, as Frank Furedi has been telling us (recently in Erasmus Law Review, for example), try to explain how people’s deep-seated anxieties drive perceptions that risk is extraordinary and unprecedented (and contribute to demands for more and better high-cost technology to deal with it) and you get some people riled up.  Disappointingly, even Effect Measure, whose assessments are consistently level-headed and cogent, slips here, flashing the moral-entrepreneur card at Mr. Holland:

Joshua Holland has never cared for a critically ill person with Acute Respiratory Distress Syndrome (ARDS), which is often the terminal event for flu patients. So I’ll tell him. It doesn’t matter if it’s caused by bacteria (many are). Half of them die no matter what you do and no matter what intensive care unit you have available to you or what antibiotic or what computer controlled respirator. We still can’t do much.

Nobody thinks it’s a good idea to let people get ARDS, and Holland acknowledges that flu is a problem that should be dealt with.  But that’s not always enough.  Question the intensity of perceived risk or the need for all the technology, and you find this out fast.

But Revere is back on track when noting that lots of problems — including malaria — are horrendous and deserve attention, and probably don’t get it because they happen to people far away.

Where would the impetus to deal with global problems besides flu come from?  A global organization that can keep things in perspective would be useful.  Poor W.H.O. isn’t positioned to do that.  Yesterday’s flu advisory from W.H.O. emphasizes the use of antivirals (oseltamivir and zanamivir) to treat people with severe or possibly severe flu:

Early treatment is especially important for patients who are at increased risk of developing complications, those who present with severe illness or those with worsening signs and symptoms.

Yet, the W.H.O. also warns against hastening the development of resistance.  This agency gets a lot of flak for not doing more and for panic-mongering when it does do more.  But, really, it’s only doing its job:  offer advice, and support interventions when invited.  It isn’t consistent, naturally.  It can’t make binding policy.  It faces a limitless and essentially insuperable legitimation problem.  In a way, W.H.O.’s hardest job is simply to maintain its own legitimacy.

Still, in a world poised to interpret signs of illness as evidence of risk and eager for technical fixes to alleviate the sense of vulnerability risk instills, the W.H.O.’s announcements can seem authoritative — and look like beckoning to the drug makers.  A Reuters story yesterday is entitled “Early Use of Antivirals Key in H1N1 Flu: WHO,” and highlights the value of the two antiviral medications more than the caution W.H.O. wants to instill.

Meanwhile, agencies that should be making real policy are focusing on immunization.  In today’s Washington Post, Rob Stein reports on health care workers’ resistance to mandatory flu vaccination.  New York State made flu immunization mandatory early on, not only for salaried health care workers but for anyone — including medical and nursing students — who might come in contact with patients, and is putting teeth into the requirement with sanctions for refuseniks.  The state resorts to high  moral rhetoric to justify its policy.  The state’s health commissioner told Stein that “the rationale begins with the health-care ethic, which is: The patient’s well-being comes ahead of the personal preferences of health-care workers.”

And at CDC, the director is cautioning that there might be a rough start-up to the swine flu immunization campaign, as the first doses of vaccine will be made available in early October.  According to the NY Times, there should be 40 million doses of vaccine available by mid-October.

We wonder whether immunization will be of any public health value at all, by the time there’s enough vaccine that it can be offered to anyone other than health care workers and a few of the people who really need protection (young people, infants’ caregivers, and pregnant women, especially — DemFromCT’s round-up at DailyKos is always worth reading).  Given the rapidity of spread of flu — in 37 U.S. states, H1N1 spread is already regional or widespread; flu is spreading locally in 12 more states, Puerto Rico, and Washington, D.C. — and based on the usual course of flu outbreaks, it seems possible that this outbreak will peak by mid November.  There’s no knowing if that will be so, obviously.  Even if it is, immunization would continue to be useful to prevent severe cases among people who are likely to get very sick if infected.

But mass immunization would no longer be of much use in preventing further incidence of infection on a population level if high levels of acquired immunity are reached across much of the population by the time vaccine is widely available.

That’s the problem with relying on mass immunization as the centerpiece of public health response: as in the old joke about comedy, timing is everything.  In 1976, there was too much immunization, too soon.  It might turn out that this year, there’s too little, too late.  The dynamics of vaccine availability and the dynamics of flu spread have to be watched in tandem, and policy updated accordingly.

In any case, with vaccine at the center, the rest of the story — the complex environmental interactions that allow flu genomes to recombine, the trade in animals and feed that allow viruses to move around, the problems of affordability and immune status and competing viral subtypes, the health care facilities to handle severe cases, and so on — gets shoved to the side.

“Deadly Choices” is heartbreaking.  It recounts a situation that was miserable, terrifying, and in some cases, fatal.  Fink reports that, among 45 Memorial Medical Center patients who died in the days during and immediately following the storm, 17 were deliberately administered lethal doses of morphine, sometimes along with a sedative, by physicians who apparently intended to hasten the patients’ deaths.  (Many of these 17 were patients at a hospital-within-the-hospital, a long-term care hospital under separate ownership that shared some staff with MMC.  At Slate today, Josh Levin discusses some of the troubling truths about the financing of long-term care hospitals, and Fink fills in some more of the blanks with a response at ProPublica.)

As Fink explained to Amy Goodman in an interview with Democracy Now earlier this week, at least one of the patients who were killed was not in extremis; he had not given up.  He was

“Ready to rock and roll, wanted to get out. And apparently, according to several people who later spoke with investigators, a discussion was had in which they talked about how they might get him out, and they decided that because he was so heavy and it was so hot and people had—I mean, just imagine….They had been going on no sleep for days, the medical workers. They were tired. They were terribly disturbed by all the suffering that they felt that they saw around them. And so, in this sort of moment, they apparently decided that [the patient] could not be brought down, could not be evacuated, that there was no way to get him out.”

The story of what happened at MMC is also profoundly disturbing.  It moves us to ask what sort of moral world physicians are expected, and allowed, to operate in.  And to wonder why moral boundaries should be so elusive to exactly the people who, with access to the means to both prolong life and hasten death, walk on morally fraught territory more often than anyone.

The horrifying events at MMC are especially  germane today — because they highlight a vexing question about health care reform that is very hard to answer:   Is our doctors’ job to alleviate suffering, or is it to improve health?

A favored guru on health care ethics, Ezekiel Emanuel, is explicitly in favor of the latter.  In “Justice and Managed Care” (subscription) in Hastings Center Report in 2000, he writes

“The allocation of health care resources should aim at and be justified by the improvement in people’s health…. The special aim or purpose of health care is curing disease, relieving pain and suffering, promoting public health, pursuing research to improve health, and so on.”

The “and so on” means that improving health — the obligation of a health care system, Emanuel asserts — amounts not just to the relief of pain and suffering but also to research and public health, and other tasks as well.  The relief of suffering might not be a priority, that is.  Or it might be a contingent priority, of importance for a limited time, or in certain circumstances — but not the only thing to worry about.

The point is not to vilify Emanuel.  He has opposed euthanasia and physician-assisted suicide, so we should assume that he was as appalled by the actions of the chief physicians at MMC as others were.

But the Emanuelian sensibility is that the system in which physicians work is not meant to be dedicated to the relief of suffering alone.  Rather, it bears other duties as well:  a broad obligation to the public to promote health, and another obligation to contribute (through research) to the future of health care.

In this narrative, the physician is marshal of a campaign — not merely joined in a series of caring relationships with each of a number of patients, but commander of troops who have a long-term goal and territory to win.   By implication, the rights of patients might take second seat to the needs of the public, or to the desire to learn more about how to improve health in the future.  Patients shouldn’t be killed, this thinking goes, but they will have to understand that the prolongation of life is a luxury commodity to which physicians have the keys — and not everyone can have access.

The sense of the physician as a responsible manager, not merely a giver of care, connects with the utilitarian credo, “the greatest good for the greatest number” — a phrase that occurs three times in Fink’s piece as she strives to characterize the sensibility of MMC providers.

But the killings at MMC should, at the very least, make us ask whether it’s a good idea to have doctors making decisions about the greater good — or whether we want them to recognize individual persons above all.

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.

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.

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.

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.”

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.