by David Healy
This is beautifully caught in the following quote by James Spence, in his day one of Europe's leading pediatricians, from a book published posthumously in 1960: “The real work of a doctor is not an affair of health centers, or laboratories, or hospital beds. Techniques have their place in Medicine, but they are not Medicine. The essential unit of medical practice is the occasion when, in the intimacy of the consulting room or sick room, a person who is ill, or believes himself to be ill, seeks the advice of a doctor whom he trusts. This is a consultation, and all else in Medicine derives from it.”44
There is a difference between medicine of this kind, which still persists to some extent when we are very ill and in isolated pockets of practice, and the healthcare which offers us almost no time or opportunity to consult but which will screen, recall, educate, and sometimes coerce us into treatments, sometimes simply so that our “carers” can hit their targets. On one side is a healthcare in which patients unknowingly are helping doctors rather than being helped; on the other side is a form of practice that is beyond measurement.
The problem does not lie in our new technologies of curing. Penicillin and insulin allow much more effective caring than was possible before. But these drugs arose as part of a kind of medicine different from the statins for cholesterol lowering, biphosphonates for osteoporosis, or antidepressants. When doctors gave penicillin to patients they were in almost all cases helping their patients. When patients take a statin or a biphosphonate, they are in many cases, perhaps a majority of cases, helping their doctors, a drug company, or a government agency rather than themselves. Giving statins and biphosphonates routinely appears to be part of traditional medicine, but in fact these treatments are more closely linked to an approach now most commonly termed chronic disease management or preventive medicine. This approach emerged in the 1980s and led, for instance, to the establishment of the Preventive Task Force noted above. The initial impetus to this approach came from prior successes in the 1950s and 1960s screening for and eliminating infections through vaccination and other programs. A growing awareness of the role of raised blood pressure and diabetes in leading to deaths from heart attacks or strokes, as a result of reviews such as the Framingham study, appeared to provide comparable targets for screening.
There are solid economic arguments for a preventive approach to medicine. In the eighteenth century, France and Britain, wary about each other and about Germany, mapped out their citizenry and in so doing learned about links between environments and diseases, and how national productivity or defense might hinge as much on proper sanitation and the quality of food supplies as on industrial innovation. As James Lind remarked in the mid-eighteenth century, the British navy was losing more men to scurvy than to any hostile engagements with her enemies.45 Florence Nightingale produced figures to show that more soldiers were dying in hospitals than on the battlefield in the Crimean War and went on to create modern nursing in response.46 And Rudolf Virchow, a key person in the creation of both modern laboratory medicine and of the notion that citizens have a democratic right to health, went so far as to suggest that “medicine as social science and politics is nothing more than medicine on a grand scale.”47 Since then historical investigations have made it clear that poxes and pestilences have done more to bring down empires and economies than wars or failures in the marketplace.48
So what could be wrong with mass screening for cholesterol levels, mapping bone densities, and administering rating scales for undetected mood disorders? The first problem is that almost as soon as it appeared pharmaceutical companies realized that preventive medicine or chronic disease management offered the perfect cover for their marketing. Far better for companies to market a treatment doled out over decades than a brief course of antibiotics that saves a life. In the 1960s, when challenged by Senator Kefauver at the congressional hearings on the pharmaceutical industry about the high cost of their drugs, Francis Brown, the president of Schering Plough, responded “Senator, we can't put two sick people in every bed where there is only one person sick.”49 In the 1980s chronic disease management opened for industry a route to putting multiple diseases within the one patient, effectively having several different people being treated in the one body.
The second problem is that company marketing distributes the instruments that screen for what they want screened for while efforts by doctors or others to screen for more important risk factors are marginalized. In this way companies invert the hierarchy of risk. Where the advice should be “stop smoking and lose weight,” it becomes “take a statin.” There is little or no research on what it might be about our diets or lifestyles or environments that is leading to a surge in asthma diagnoses—the pressure is not there to research a disease that is not ordinarily fatal and for which the drugs available are so lucrative—Advair alone, the inhaler that Jane (described at the start of the chapter) was put on, is worth $8 billion per year to GlaxoSmithKline, while the Singulair she also took is worth $5 billion to Merck despite the fact that the published studies show a minimal benefit for this treatment.
A third problem is that while there may have been a cost in terms of injuries from the vaccines and other treatments necessary to eliminate polio and other medical scourges, the benefits overwhelmingly outweighed the costs, but this is not often the case for the statins, biphosphonates, hypoglycemic agents for diabetes, beta-agonists or combined beta-agonists and steroids for asthma, or antidepressants, especially when all these drugs are given in primary care as they have to be to become blockbusters.
When it comes to managing risk factors or chronic treatment, medical discretion is called for, but such discretion is regarded as suspect by those who frame guidelines for diseases. To managers, permitting discretion appears to be a recipe to return medical practice to the cottage industry era. It is, moreover, difficult to exercise discretion when healthcare systems have been redesigned so that a doctor rarely sees the same patient on consecutive occasions or knows much about their family or circumstances.
Right through to the 1960s medicine remained a rather pure market catering to our needs to have cures to life-threatening diseases. But just as satisfying our basic needs for industrial goods half a century earlier led modern companies to focus then on marketing and the creation of ever-larger consumer demand, our liberation from servitude to many diseases laid the basis for a creation in both doctors and patients of medical wants that has underpinned the marketing of conditions such as osteoporosis, raised cholesterol levels, and a range of behavioral disorders from female sexual dysfunction to ADHD.
It also laid the basis for the emergence of the medical consumer, who would shop not just for drugs but also for services, especially services whose specification includes not only an adherence to guidelines but friendliness and the appearances of concern for the consumer. For advocates of free markets it was just this kind of consumer who would drive healthcare costs down.
But while a market of consumers of this sort can readily be envisaged for enhancement technologies from designer vaginas to optimal cholesterol levels and is perhaps the only way to handle these healthcare products, real disease is not something we consume. Like death, albeit slower, it consumes us. It may transform our identities irreversibly, in a way that no subsequent purchases can undo. We make our accommodations with disease as best we can, and since the time of Philippe Pinel that accommodation has involved a medical realization that sometimes the greatest wisdom is to do nothing other than have the medical team and the patient endure together.
Companies, however, have been so successful at restructuring the market in terms of the wants of both doctors, the primary consumers of blockbuster drugs, and patients, who are corralled by direct-toconsumer ads to seek out these treatments, that few medical or patient consumers now understand no. And this new consumer-driven market has all but swept away traditional medicine.
Is there any alternative to the health products market that appears to have replaced what once was medicine? To see where medicine might go instead, let us
look at another set of productive relationships: the caring a parent, often in tandem with a whole village, gives a child that helps to produce a person. Caring of this sort remains in touch with the child's zone of proximal development so that they get the right challenges, opportunities, protections, and discipline at the right time. The right caring by a teacher or school similarly helps children develop. Caring of this sort is not at odds with technologies—mothers and teachers will want their children to have computers at an appropriate stage of development and make use of other tools of culture. It is a people, rather than raw material or technology, that ultimately forms the bedrock of an economy, especially a knowledge-based economy. It involves discretion—although this discretion is rapidly being eroded by increasing regulations about schooling requirements. These are areas, furthermore, where most of us want to limit the intrusions of both the market and the state.
This is very close to the kind of caring once found in the best of medicine, as exemplified by James Spence or Alfred Worcester—often delivered now as much by a multidisciplinary team as by an individual and increasingly dependent on cooperation between doctor and patient. Medical care of this kind is productive of people, and of human dignity—or as much dignity as a disease will allow. This caring will readily embrace the appropriate technologies, from insulin to surgery, in order to get the best possible outcome for the person. The focus on real disease that comes with such caring relegates consumption to a secondary role. No pharmaceutical company is ever likely to provide a scanner, meter, or rating scale for medical care that focuses on the person rather than a disease.
What is at issue can be illustrated by considering a doctor's role as the gateway to sick leave and disability payments. One of the most striking lessons doctors learned in World War II was that soldiers due to go on leave would often fail to report serious illness, while others with no prospects of leave became strikingly ill. The doctor was the passport out of active service, if he could be fooled into thinking you were ill. These insights were brought back from war by a generation of physicians who were more sensitive, accordingly, to the ways in which we might all be trying to escape from the prison of our circumstances—an element present in many consultations that cannot readily be measured but which may lead all of us to play along with suggestions that we have disorders like osteoporosis or mild asthma in need of management with the latest drug.
But it was only some doctors who had learned these lessons—not health economists or health planners or even all doctors, which may explain what happened next. The discovery of penicillin and streptomycin in the 1940s eliminated tertiary syphilis and tuberculosis and with these diseases the costs linked to the occupancy of thousands of beds. These cures returned thousands of people to able-bodied and productive status, thereby increasing the wealth of the nation. Further breakthroughs in the 1950s with the first treatments for asthma, first oral antidiabetic agents, first antihypertensives, first antipsychotics and antidepressants, should, if used judiciously, have increased national productivity by many multiples of what the treatments might have cost, but instead sickness rates and disability payments began to skyrocket and the costs of healthcare grew faster in the United States than elsewhere, growing from $100 per person per annum in 1950 ($500 per annum in today's prices) to $7,681 per person per annum in 2008.50
There was an increase in productivity but much less than in other countries. Where US medicine led the world in the 1960s, in 2000 the World Health Organization ranked the United States 72nd on what it termed health system attainment and performance and 24th from among 191 countries worldwide in terms of overall health, as measured by indices such as infant mortality and life expectancy,51 while in 2008 the Commonwealth Fund ranked the United States last among developed countries in terms of quality of healthcare.52
One of the factors contributing to a comparative decline in American life expectancy rates is most visible among the elderly. Recent years have seen a startling rise in the extent of polypharmacy, where people are given several different drugs at the same time. It might not be so surprising to find that some people take both a treatment for asthma and for osteoporosis, but as Jane found when being treated for asthma alone few people end up with less than three different treatments. Similarly it is common in the mental health domain to find people on cocktails of four or more drugs rather than just an antidepressant. People with two conditions may be on seven to eight drugs. And ten drugs or more is fast becoming the norm for the elderly especially in the United States. But in this age group, in addition to the problems caused by each blockbuster drug, there are the problems caused by the increased likelihood of interactions between them. In the elderly the rate of hospitalization due to adverse drug reactions is six times higher than in the young and rises sharply in proportion to the number of drugs being taken.53
It is almost impossible to get data linking polypharmacy to productivity, because doctors simply do not collect it and companies have no incentive to look at it. Pharmaceutical companies have detailed data on what every doctor prescribes and use the data to spur their sales force on just like an athlete uses a stopwatch, but doctors only record and report one in a hundred of the deaths or serious injuries that happen on drugs. None of our measurements track people. Whether you think we are dealing with poisons to be used judiciously or fertilizers to be given out indiscriminately, few people can ingest ten or more chemicals given together without toxic effects—but we don't track this.
A recent report from the Congressional Budget Office identified the growth of prescription-only medicines and other high-tech medical developments as the greatest contributor to escalating costs of medical care in the United States.54 But aside from the raw costs of drugs, pharmaceuticals contribute in many other ways to our rising health costs. If the increasing costs of drugs led to people being more productive this could be justified, but as we have seen repeatedly many of our more recent treatments if used injudiciously, as the clinical trials we have reviewed have shown, will injure and kill more than they save. Despite this evidence, the media hype surrounding new treatments raises expectations and leads people to seek medical care when they don't really need it. When companies manufacture new diseases (disease mongering) they also pull people into medical care who don't need it. In all these cases, as Sanjeebit Jachuk found back in the 1980s, a significant proportion of people will be made less healthy and less productive.
Finally, the drugs bring in their wake a fetish with measurement. In the face of ever-escalating costs doctors can only afford to do things that come with an evidence base demonstrating they “work.” But here we run into a paradox. While the evidence from trials of many drugs, as discussed in chapter 3, shows that watchful waiting may help far more patients than intervening with an active drug, watchful waiting cannot be shown in its own right to “work.” It can't be measured against anything. As a result, there is no longer any basis for medical discretion, no basis for a consultation. This is a world in which doctors are forced to adhere to guidelines and provide unambiguous benefits that can be demonstrated for instance when the figures on a peak flow meter go the right way. A world in which it only makes sense for insurance companies to reimburse for visible disorders of the type demonstrable on DXA scans or through blood cholesterol markers and for treatments that look good on company-run trials and sold on the promise that despite their cost doing what works will ultimately bring healthcare costs down.
In a world where measurement has such powerful effects, it seems more than ironic that measurements such as the ones cited for healthcare costs and life expectancy have so little effect in galvanizing reform or seem only to demoralize us and perhaps inhibit our abilities to do anything. What is it that doctors and patients today are missing that might help them restore “care” to medicine, or what is it that they are up against that seems so difficult to grapple with?
7
The Eclipse of Care
Cora was eighteen and beautiful. Slim, with long blond hai
r, about average height. She had just finished high school, where she had been the homecoming queen. She was set to attend college, though she wasn't certain what direction to take there. She had a boyfriend but was worried he might want to leave her, while at the same time knowing her parents didn't approve of him.
At a rock festival with her boyfriend, she got lost and, trying to find him, had taken a fall and injured her arm. She was admitted to a local hospital for treatment and sent home from there. Several days later, in a state of perplexity she was brought to the psychiatric unit where I have inpatient beds.
Had she been traumatized or abused in some way? Had she been taking drugs and had a trip gone awry? Had her boyfriend left her? Her mental state was quite unstable, but despite having input from the many people involved in looking after someone in hospital I couldn't make a diagnosis I was happy with. Cora was not hearing voices, did not have delusional beliefs, and was not consistently depressed, elated, or anxious. But she was volatile. At times in the ensuing weeks, apparently improved, I gave her leave to go out with her parents, but she was typically brought back severely confused again—sometimes only minutes after having walked out through the hospital doors. At other times she was almost completely unresponsive and inaccessible. I could see no reason to give her an antidepressant or an antipsychotic. On occasion when she seemed particularly agitated I wrote her up for a minor tranquilizer—a benzodiazepine.
Finally after about six weeks she went on weekend leave with her parents, held steady on her own, and did not come back. I was happy to file her case as diagnosis unknown. I heard she was doing well at college and was still dating the same boyfriend.
I saw her again a year later—8 1/2 months pregnant. She was clearly too unwell to be managed at home. But where she had been mute and inaccessible previously, now she was overactive, manipulative, and attention-seeking while still seeming confused; her actions did not seem fully under her own control. She looked as though she might go into labor at any moment, so I held off medication.