Belief vs. "truth": how people often make medical decisions

In a fascinating article in the “Medicine and Society” section of the New England Journal of Medicine, “Beyond belief—how people feel about taking medication for heart disease”[1], Lisa Rosenbaum discusses some of the reasons that people do not take medicines prescribed for them by doctors, really for any condition, not just heart disease. These reasons go beyond the obvious ones of personally experiencing side effects and not being able to afford them; indeed, she starts out discussing the fact that folks don’t use aspirin, a very cheap drug, even after having been diagnosed with coronary heart disease, for which the evidence of benefit is very strong.

Rosenbaum addresses a number of reasons, beginning with simple belief. A friend tells her that “My parents [whom Rosenbaum describes as “brilliant and worldly”] are totally against taking any medication”. Another person she meets, prescribed a “statin” (an anti-cholesterol drug), has no intention of taking it and indeed expresses disdain that is “raw and bitter” (the disdain, not the pill). For him, it is tied to the suffering he saw his sister endure when taking toxic anti-cancer drugs. Her hairdresser suggests another reason: taking medication means acknowledging that you are sick, and people don’t want to acknowledge that. He says that he gives his grandmother her nightly medication by telling her they are vitamins—after all, vitamins are to make you healthier, not treat your sickness.

Rosenbaum tells more stories, relating more reasons, but most come down to a belief, almost to an unchangeable worldview. Some of the issues seem to be semantic. People do not want to take “chemicals”, but will take vitamins. Connotation, and the “frame” that people put around words and concepts (sickness, drugs, natural, chemical, etc.) are very important. Of course, they’re all chemicals, and of course anything (“natural” or produced in a laboratory) that can have a biologic effect (good or bad) can have other effects (good or bad).  People sometimes cite the side effects of drugs even when they haven’t experienced them but have read or heard about them, and credit them with more importance than the beneficial effects. While some people have always made decisions based on creating a parallel to what happened to someone they know, the Internet has probably magnified the universe of people they “know” and stories that they “hear”.

Perhaps the scariest reason Rosenbaum points out is that the success of medical treatment has led people to minimize, in some cases,  the seriousness of the disease. As a cardiologist, she points to acute myocardial infarction (heart attack), which used to require 4-6 weeks of hospitalization, and now often has people out of the hospital in 24 hours. She talks to a person who contrasts it to the flu, which “can knock you down for days or a week or two, [while]the heart attack, once they do the thing, you’re in good shape.” And yet, “once they do the thing”, whatever it is, stents or clot lysing (presumably not yet bypass, which does require a longer hospitalization) and you feel better, you still have the disease; only the use of certain drugs along with diet and lifestyle changes can modify the trajectory of the disease. But the latter are hard, and maybe we don’t want to take drugs. Because, you know, we are feeling better.

I admit to initially feeling anger, hostility, as I read the “reasons” that these people would not take medicine, feeling that they were stupid. I don’t mean that I was angry that they don’t take medicine; this is their decision. In addition, there are lots of important reasons to be wary of taking medicines that go beyond personal experience with side effects. Not the least of these is the fact that they are heavily marketed by drug manufacturers, who are in business solely to make a profit, and regularly invent new “diseases” that “need” treatment in order to market their drugs and make money. In addition, “indication creep” (which I have discussed before, The cost of health care: Prevention and Indication “creep”, drugs, and the Sanders plan, June 25, 2011, particularly citing a piece by  Djulbegovic and Paul, “From efficacy to effectiveness in the face of uncertainty: indication creep and prevention creep”).[2] This means that a drug, which is found to be effective and relatively safe for a certain condition, at a certain severity level, in certain people, starts to be used by physicians (often encouraged by the manufacturers) for other people with less severe levels of conditions, and sometimes for other indications for which efficacy has not been proven. For example, starting drugs for cholesterol at levels below which treatment has been shown to reduce mortality, or putting younger (or older) people on treatments only shown to benefit older (or younger) people, or men or women.

Indeed, this appeals to another system of beliefs common in people (including doctors), that if a little is good, more is better; if reducing cholesterol in people whose level is above “X” is good, why not in people whose cholesterol is a little below “X”; if getting your average blood sugar below “Y” is good, why not a little lower still; if aspirin is good prevention and reduces death in men who have coronary heart disease, why not use it in men who don’t but otherwise look a lot like men who do? This sort of belief may lead to behavior opposite of that described by Rosenbaum (that is, taking medication when it is not of value rather than not taking medication that is likely to be of value) but it stems from same root—making decisions based on beliefs rather than evidence. And it is not uncommon to see both behaviors manifested in the same people: someone who would “never” take “artificial chemicals” (regulated drugs) into their body who ingests large amounts of unregulated chemicals (labeled as “natural”). The apparent contradiction is non-rational to me but makes sense to them.

I often—maybe usually—agree with those who say “less is better”, such as Ezekiel Emanuel in his New York Times op-ed “Skip your annual physical”.[3] But I hope that I do this when, as in the case of the annual physical, the evidence does not demonstrate benefit, and the cost is high, as it is for many heavily-marketed drugs. And, of course, my anger subsides as I realize that I often feel the same things, and maybe even sometimes act on them. I don’t want to be a sick person, certainly not one with a chronic disease (it’s bad enough to have the flu!) and taking a medicine for a condition labels me as such. I don’t want to take medicines just because they “might” help (prescription or over-the-counter, made by traditional pharmaceutical manufacturers or “natural” companies) if there is not good evidence, and I don’t want to experience unpleasant side effects. But I do take the medicines that have been shown to benefit people like me, with the same or similar risk factors, and even put up with some side effects (e.g., mild myopathy from the statin).

I am not going to change anyone’s worldview, no more than Dr. Rosenbaum is likely to change that of the “brilliant and worldly” friends of her parents. And I am certainly not going to become an advocate for treating for the sake of treatment, or being a flak for drug companies. But if there is strong evidence that taking a drug (in the lowest effective dose) for a condition that I in fact have (denial or not) is likely to have a “patient-important” (meaning lower risk of premature death or better quality of life) outcome, and I personally do not experience serious side effects, I will take the drug.

The key issue here is not making decisions to do, or not do something (have a physical or take a drug) because of a general belief that such things are good or bad for you, but rather to evaluate the evidence of how it might benefit or harm you, and to make a decision that balances these filtered through your own value system, how much you value the potential benefit or harm that might come.

To me, this is a rational approach.

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[1] Rosenbaum L, “Beyond belief—how people feel about taking medications for heart disease”, NEJM 8 Jan 2015;372(2):183-87

[2] Djulbegovic B, Paul A., From efficacy to effectiveness in the face of uncertainty: indication creep and prevention creep”, JAMA. 2011 May 18;305(19):2005-6..

[3] Emanuel E, “Skip your annual physical”, New York Times, January 9, 2015.

Physicians' role in controlling health costs: do no financial harm

There are a lot of people and companies out there who are making, or seeking to make, a profit on delivering health care. I have written about this often. However, it is in fact physicians who control many of the expenditures, and thus the cost; they are the ones who order the tests, prescribe the medicines, use the devices, refer to each other, advise their patients regarding the most appropriate treatment. To the extent that physicians (and other providers who have this power) exert it wisely, judiciously, and appropriately, the cost of care might begin to be controlled. Yes, there will still be tensions between cost and benefit, between benefit to a single person vs. benefit to the whole population, between what the goals of care are, and the degree to which physician choices are limited, but cost consciousness among physicians would go a long way.

It was, therefore, disappointing to read the results of a survey of US physicians recently published in JAMA. In “Views of US Physicians About Controlling Health Care Costs”, Jon C. Tilburt and colleagues randomly surveyed 2665 physicians (a 65% response rate, pretty good) about a variety of issues regarding cost control in health care. Most of those surveyed did not believe that physicians had any major responsibility for controlling health care costs;  it was “the other guys”:

‘Most believed that trial lawyers (60%), health insurance companies (59%), hospitals and health systems (56%), pharmaceutical and device manufacturers (56%), and patients (52%) have a “major responsibility” for reducing health care costs, whereas only 36% reported that practicing physicians have “major responsibility.”’

Whether 50-60% of doctors believing something can be considered “most” is open to question, but there is no doubt that when only 36% of doctors believe that they have a major responsibility, most do not. This is, of course, as I have noted above, incorrect. Do they really believe it? If so, this would imply that they believe that they, and other doctors, are doing all they can already, within the limits of their ethical responsibilities to their patients. However, their responses to other questions in the survey cast doubt on whether they actually are, or even think that they are. While ‘More than 90% of physicians expressed some or strong enthusiasm for -improving conditions for evidence-based decisions, including “expanding access to quality and safety data,” “promoting head-to-head trials of competing treatments,” and “limiting corporate influence on physician behavior,”’, only 51% were strongly enthusiastic about “limiting access to expensive treatments with little net benefit”. Since another 38% were “somewhat enthusiastic”, the article’s contention that it was “relatively strong support” is justifiable; still, it is pretty scary to think that half of doctors are not strongly enthusiastic about this issue.

When it comes to physician reimbursement, it is unsurprising that doctors are very chary of any new models, since most have been doing pretty well with the old ones. Thus, only 7% supported elimination of “fee-for-service” (FFS), in which doctors get paid for what they do (and, as we have often discussed, get paid more for doing more, whether necessary or not, and a lot more for doing procedures) rather than getting a global fee for caring for patients (which, in full disclosure, I have advocated). It is also not surprising that those physicians who were paid salary only or salary-plus-bonus were more than three times as likely to support elimination of FFS. Self-interest is a powerful motivator.

In an accompanying editorial, “Will physicians lead on controlling health costs?”, the ubiquitous Ezekiel Emanuel (former Obama health advisor and now apparently the “go-to” guy on health policy for JAMA and the New England Journal) and Andrew Steinmetz, come to the unavoidable conclusion that, at least for now, the answer is no. This disturbs them, and they spend a lot of time showing why these doctors are wrong. They note that “Not unlike the public, physicians embraced reforms that are sufficiently vague that they may offer only modest improvements but certainly will not transform the health care system,” which seems to be true; if this survey indeed reflects physician opinion, they don’t want transformation of the system. After all, Emanuel and Steinmetz concede, “Change is hard,” but they are very clear that it needs to happen, and the editorial (which I agree with a lot of) tends to get more shrill as it goes on. They take heart in faint positives:

“…not all the results are discouraging. Physicians do seem to recognize that health care costs are important. For instance, 51% strongly disagreed that the cost of a test or medication is only important if the patient has to pay for out of pocket; 85% strongly or moderately agreed that trying to contain costs is the responsibility of every physician; and 66% disagreed that there is too much emphasis on costs of tests and procedures.”

How much hope does it give you that half of doctors do not strongly disagree that cost of medication is only an issue if it is coming directly out of a patient’s pocket? I imagine it gives pharmaceutical companies a great deal. They note that 70% support continuity of care (a good thing, why not?) but add that it is “…another reform not proven to reduce costs or reengineer the system,” losing sight of the fact that those are not the only two goals; providing better care to people is another!

Physicians often don’t want to do the hard work of having to make difficult decisions of what is the best treatment for individuals even considering risk/benefit to the individual, not to mention harder to measure (and more controversial) work of balancing of benefit to the individual vs. the whole society. It is much easier for someone else to make those decisions, allowing you to be free to criticize them and tell your patients “it’s not my fault”. But it is disingenuous. With authority comes responsibility. If physicians want to continue to have significant autonomy in the decisions that they make, they need to take on responsibility for the impact. Saying “I just made this decision because it was best for my patient and I can’t be responsible for overall health costs” is a little like saying that the candy bar wrapper you just chucked out the window of your car isn’t responsible for the garbage all over our roads. More important, and concerning, is the finding that there is little sense of responsibility for choosing the right treatment – not the newest, or most expensive – for the individual.

In a recent JAMA “Viewpoint”, the same issue is addressed by Christopher Moriates and colleagues in “First, Do No (Financial) Harm”[1]. They argue that, in this context, physicians have 4 responsibilities. The first two are innovative and good ideas:

·         Screen for financial harm, i.e., what will it cost this person out of pocket and can they afford it?;

·         Adopt a universal approach, i.e., do with everyone. As with HIV screening, or asking about risk behaviors, don’t assume you can “tell” who is at risk; doing it with everyone means those you ask are not being “singled out”;

The last two are less innovative but equally important, and address what I have discussed above:

·         Understand financial ramifications and value of recommendations, and

·         Optimize care plans for individual patients.

The authors provide a nice “box” showing how this might work for the problem of back pain.

Actually, if one looks at past health reforms, physicians as a group have never been in the lead. AMA shot down both President Truman’s national health insurance proposal and strongly opposed Medicare and in 1965. Change is hard, and it is particularly hard when there is good chance that change will not be beneficial for your pocketbook. But change is necessary. Not necessarily in, or only in, the areas that Ezekiel and Steinmetz focus on (reducing costs and “re-engineering the system”) but certainly in ensuring money is not wasted, quality of care is high, people have trust in their providers, and that the ethical principle of justice – that EVERYONE with the same conditions has access to the same diagnostic and treatment options – is adhered to.

We certainly don’t have the latter, and it is perhaps the most important. People --  doctors, patients and others -- cannot let that concern be lost as we “re-engineer”.

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[1] Moriates C, Shah NT, Arora VM, “First, Do No (Financial) Harm”, JAMA. 2013;310(6):577-578. doi:10.1001/jama.2013.7516.

One thing to NOT worry about: paying for health care -- in France

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I recently saw the film Le Havre, a film set in that French city and made, in French, by Finnish director Aki Kaurismäki. It was a very good film, generally well-reviewed (here is the New York Times review), and part of its appeal for me is its unabashed portrayal of working-class people as the central characters. One of the plots involves the illness of the female lead, Arletty, who suffers severe abdominal pain, is brought to the hospital, and is told that it will be terminal (although, the doctor observes, “miracles do happen”.) I don’t need to share any more of the plot, because what I found striking was really incidental to it.

Kaurismäki goes to some length to depict both the poverty and dignity of his characters. It is an imaginable working class poverty -- this is not the Mumbai of Slumdog Millionaire – but it is certainly poverty. Arletty’s husband is a shoeshine man; they live on an alley off a small street in a house that evokes the apartment of Ralph and Alice Kramden on The Honeymooners. When he sees his wife in such pain, her husband’s main concern is how he will get her to the hospital. He goes to the street to ask a shopkeeper if he can use her phone (they don’t have one), and she offers to drive them.

What is not a concern is whether they can afford her medical care. As I am used to being in the US, to caring for people of limited means, of seeing people in the free clinic who cannot afford to go to the doctor or people admitted to the hospital when they finally show up in the emergency room with disease that is far gone because they haven’t sought care, I found this a bit jarring. I was waiting for Arletty to protest that it was “nothing” (she has been in some denial already), for fear that they couldn’t afford medical care. But she doesn’t, and he says nothing about it, and goes off to find transportation. We could see the same thing in an American movie, and we would expect the same thing in our own lives – when your wife is really sick, you take her to the hospital, you worry about the bills later.

Except that wasn’t why. They weren’t worried about the bills. Because it was France. With a national health insurance system, where everyone, even the wife of a self-employed shoeshine guy living in a tiny house off an alley, has health coverage. In the film, Arletty is in the hospital for several weeks, but of all the issues that occur, how the couple will pay for it never comes up. Not at all. It is not even a thought in their minds. But it is a thought in mine, and I keep having to remind myself that it is not part of the plot because it is not an issue that French people have to concern themselves with. The illness, yes. Whether she will survive, yes. Whether he will earn enough money each day to buy dinner, yes. But not how to pay for several weeks of hospitalization. Amazing.

There was another aspect of the healthcare portrayed in the film that struck me. The hospital was simple and unostentatious. It looked a little dated, old-fashioned, like the houses and the shops and the working-class lives of the characters, even though the film and its theme are contemporary. Maybe this is also something about France. The hospital is clean, freshly-painted, with clean linen, and private rooms, and IV poles and doctors and nurses. But it is simple. The ceilings are not high, there is not expensive art on the walls, or carpets, or hallways twice as wide as they need to be. It is functional. It is not third-world, but it is basic. It is pretty unlike my hospital, or most of the hospitals that we see in the US (except some of the oldest public institutions). If someone with private health insurance saw this hospital in, say, Kansas City, they would be unimpressed. They might rather, next time, seek one that was “nicer”. Fancier. With really good hotel accommodations. This is what we look for in the US, what we expect. Surely this is what they lose in such national-health-insurance countries as France.

I checked this with a friend, who is from Canada. He said that this is the way hospitals in Canada are; clean, and functional, but not fancy. He told me he was shocked when his wife had a baby in Kansas City and there were hardwood floors. What for, he wondered? Of course, we know what they are for. They are to help to provide a competitive advantage, to make people choose one hospital over another. For the same reason that hospitals buy new MRI scanners when the hospital down the street has one that is underutilized. Why they have fundraisers to be able to support their cancer center, to attract people with cancer (and, of course, insurance!) to them, rather than to the perfectly good cancer center across town. Why, as depicted in a recent New York Times “Opinionator” by Ezekiel Emanuel and Stephen D. Pearson (“It costs more, but is it worth more?”), hospitals such as Mayo Clinic are building their own billion-dollar proton-beam accelerators to treat cancer when there are more than enough in the country to treat the relatively small number of people who require this kind of cancer therapy.

Because, in the US, healthcare provision functions much more as a business than as a social good. The “product” is healthcare for people, but the product is only of value when it can be sold to those who can pay. We have hospitals that compete for some of our people, while there are others who can barely get care. This competition model can work, just as it works for other products – vendors compete for those who can afford it and ignore those who cannot. If we want healthcare to be an industry, a business, rather than health care.

Le Havre is a very good film, and it does not shy away from social issues. In fact, it addresses many of them. But access to health care is not one, it is not Sicko! The themes I discuss here are just in the background of the film,and I imagine they are not even noticed by French audiences. Or Finnish ones. Being able to afford medical care is not an issue in those places.

Which is as it should be.