How Much Weight Should Anecdotes Really Have In Health Policy?

There’s something compelling about the personal narrative that vast mountains of quantitative data cannot rival. Anecdotes are, quite simply, powerful. They tap into our shared humanity, making something seem somehow more real by putting a face on it. This is why, if you follow politics for very long, you will find numerous cases of policymakers championing issues that have touched their own lives in some way. For example, Senator X doesn’t care about issue Y, until they discover that their son or daughter is affected by it. Then, almost overnight, they seem to care more about issue Y than almost anything else. Such a shift is completely understandable, but often out of proportion to the true scale of the issue in society.

In health policy, the personal narrative can also be very powerful. In fact, the journal Health Affairs routinely runs a “Narrative Matters” section that puts a face on the health care issues of the day. It is absolutely critical that health policymakers, health services researchers, and others, not lose sight of the fact that their work and the subsequent decisions it informs, are based on real people. However, it is equally critical for objectivity to be maintained, and narrative can threaten our work in this regard.

As an example, Tom Perkins recently wrote in the Wall Street Journal about his ongoing battle with prostate cancer in his eighties. His article takes issue with recommendations from the U.S. Preventative Health Service that call for moving away from prostate cancer screening (the PSA blood test). It’s hard to argue with his case, specifically, because he had an aggressive form of prostate cancer that was caught early and is being treated with at least moderate effectiveness. Had he not been screened, the cancer would most likely have killed him. You can see why he would consider the U.S. Preventative Health Service to be a “death panel” (his words, not mine).

The problem is that Tom Perkins is an anomaly. The overwhelming majority of prostate cancer is not aggressive. This is why you may have heard the saying “Most men die with prostate cancer, not of prostate cancer.” One of the greatest things about health services research is the opportunity it affords to step back from the trees and take stock of what is happening to the forest. What we discover then leads us to confront more philosophical questions. For example, are we okay with paying for 100 people to be screened for something that will only help 1 of them? If you were making this decision the way you make decisions about most everything else you buy, you’d want to know some things. For instance, how much does the screening test cost? If the test isn’t done, what else could the money be used for? How accurate are the results of the test? How much will the 1 person be helped? Do I know the 1 person? Am I the 1 person?

These questions represent the continuum from purely objective research to very subjective personal anecdote. They all deserve to be answered, and each answer informs our decision-making in a different way. Unfortunately, when people espouse one extreme or the other, which is admittedly much easier to do than holding the two in tension, something very important gets lost.

 

Rationalizing Rationing

When will we ever be free of the dreaded “R” word in health care? Will we ever accept that we can’t have our cake and eat it too? I’ve written about rationing many times before. Today, I want to share with you the words of Dr. Don Berwick, outgoing director of the Centers for Medicare and Medicaid Services. In a speech at the Institute for Healthcare Improvement National Forum on December 7, 2011, Dr. Berwick had this to say:

“Inscribed on the wall of the great hall at the entrance to the Hubert Humphrey Building, the HHS Headquarters in Washington where my office was, is a quotation from Senator Humphrey at the building’s dedication ceremony on November 4, 1977. It says: ‘The moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the aged; and those in the shadows of life, the sick, the needy and the handicapped.’

I believe that. Indeed, I think that Senator Humphrey described the moral test, not just of government, but of a nation. This is a time of great strain in America; uncertainty abounds. With uncertainty comes fear, and with fear comes withdrawal. We can climb into our bunkers, each separately, and bar the door. But, remember, millions of Americans don’t have a bunker to climb into–they have no place to hide. For many of them, indeed, the crisis of economic security that we all dread now is no crisis at all–it is their status quo. The Great Recession is just their normal life….

Cynicism diverts energy from the great moral test. It toys with deception, and deception destroys….If you really want to talk about ‘death panels,’ let’s think about what happens if we cut back programs of needed, life-saving care for Medicaid beneficiaries and other poor people in America. What happens in a nation willing to say to a senior citizen of marginal income, ‘I am sorry you cannot afford your medicines, but you are on your own?’ What happens if we choose to defund our nation’s investments in preventive medicine and community health, condemning a generation to avoidable risks and unseen toxins? Maybe a real death panel is a group of people who tell health care insurers that it is OK to take insurance away from people because they are sick or are at risk for becoming sick….

And, while we are at it, what about ‘rationing?’ The distorted and demagogic use of that term is another travesty in our public debate….The true rationers are those who impede improvement, who stand in the way of change, and who thereby force choices that we can avoid through better care. It boggles my mind that the same people who cry ‘foul’ about rationing an instant later argue to reduce health care benefits for the needy, to defund crucial programs of care and prevention, and to shift thousands of dollars of annual costs to people–elders, the poor, the disabled–who are least able to bear them. When the 17 million American children who live in poverty cannot get the immunizations and blood tests they need, that is rationing. When disabled Americans lack the help to keep them out of institutions and in their homes and living independently, that is rationing. When tens of thousands of Medicaid beneficiaries are thrown out of coverage, and when millions of seniors are threatened with the withdrawal of preventive care or cannot afford their medications, and when every single one of us lives under the Sword of Damocles that, if we get sick, we lose health insurance, that is rationing. And it is beneath us as a great nation to allow that to happen.”

Why don’t you ponder that over the next few days, and have a Merry Christmas!

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Wasting Money At the End of Life?

Peter Bach is a physician with a recent op-ed appearing in the New York Times. Dr. Bach’s piece about whether or not end-of-life health care spending is wasteful is compelling. I recommend you read his essay, but I want to hit some of the high points.

The first is that we may be making an error based on hindsight. Precisely because hindsight is 20/20, we can fall into the trap of evaluating health care decisions after the outcome is known, which is not how health care decisions are actually made. So, as Dr. Bach stresses, a tremendous amount of health care spending may be deemed warranted if it saves the life of the patient, but the same spending would be labeled wasteful if the patient dies. This is an excellent point.

Other points Dr. Bach makes relate to supposed sources of bias. For example, sick people need more health care (which costs more money) and are also more likely to die. Ergo, the link between health care spending and death is likely to be positive, but the reality is that health status is the common denominator. He also laments the fact that data on end-of-life spending is much more readily available than data on other types of health care spending. That’s also a pretty accurate assertion.

It’s in his concluding remarks that Dr. Bach gets to the real matter at hand: We don’t know who is going to benefit and who isn’t. In his essay, he describes how he saved someone’s life. As it turns out, the condition that person had is fatal in about 1 of every 8 cases. In other words, paying to intervene for that condition seems like a good bet. If, on the other hand, only 1 out of 8 people with the condition survived, it might be a tougher sell. Of course, what that scenario underscores is that the overall costs and benefits are important to understand, but so are the individual risks and benefits. For example, if you have the condition, you are probably hoping that you are the 1 person who will survive after receiving the intervention, not counting on your being 1 of the other 7.

Research that can help us understand not only which procedures are generally more effective than others, but also who the 1 person who loses or benefits (given the two scenarios above) will be, are the next frontier in improving the health care system–cutting costs without harming quality. Of course, this type of research will bring accusations of “death panels” back out of the woodwork. I just hope few people will actually take such things seriously, so that the necessary work can proceed. Without it, I’m not sure that there’s much hope.

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The Rationing Primer

If you wade through the various arguments made in opposition to governmental involvement in health care, you will soon find that it all boils down to one thing: rationing. People may speak of things like “socialized medicine” or “death panels” and make appeals to the free market as they bemoan the loss of personal freedom that they see as inherent in any health care system with almost any level of governmental involvement. What they are really saying is that they are worried that the government will make decisions for them and that they may not agree with the decisions that are made on their behalf. They are chiefly worried about rationing, which they define as the government refusing to pay for a health care good or service that the person anticipates they might benefit from some day. In fact, they often seem to think that the government will literally prohibit them from seeking the care they anticipate needing at some point in the future.

I will grant them that if such things were true, they would be terrifying. Thankfully, they aren’t true at all. What’s perhaps more alarming is how some people’s definition of rationing has grown so limited. Compare people’s concerns with the present reality: They are worried that government will make decisions on their behalf, which they may not agree with. Why then are they not equally as worried about all of the decisions already being made on their behalf by the employee benefits managers at the places where they work or by the claims specialists at their insurance companies? It seems to me that both situations violate the principal that individuals should be free to make their own decisions. People are also worried that the government will “ration” by preventing them from getting the care they need. The reality is that the government has no such authority and that money talks.

Here we are introduced to the true meaning of rationing, where prices dictate the exchange of goods and services. Today, anyone with enough financial resources can make an appointment with any doctor they choose, get any services they need, and so on. They don’t need insurance. They can, in effect, self-insure, and no health reform will change that. If the “Big Brother Plan” doesn’t cover something they need, they can simply pay out-of-pocket and get whatever care they want.

The flip-side of this is that those without the financial resources to do so cannot be assured of getting the care they need. Today, there are people who go without. Why? Because we ration care based on the ability to pay for it, and not everyone is able to do so. Health reform is designed to help these people gain access to basic medical care. Many of us, it seems, are unwilling to believe that this is rationing. Others surely understand the current system, and simply fear that in a world where rationing is inevitable, giving to those who have not will necessitate taking from those who have. To some extent they are right. However, the impact of that transition can be lessened by capitalizing on the reduction of systemic inefficiencies. Moreover, none of us can be certain that we will not fall catastrophically ill in the future, and if such a fate should befall us, I imagine that we will hope desperately for a system to come to our aid, rather than resign ourselves to suffer as victims of a system motivated by unabashed self-interest.

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Health Care Rationing: The Basics

Another one of the political hot potatoes is “rationing.” Put simply, rationing is the distribution of resources. More specifically, rationing is the distribution of limited or scarce resources. Most goods and services are inherently limited. That is to say that there is not an unlimited supply of much of anything in the world. For example, there is not an endless supply of cheeseburgers. If there were, then everyone would be able to have as many cheeseburgers as they wished. Obviously, given a sufficient demand for cheeseburgers, we would run out of cattle at some point. Cheeseburgers are, therefore, a limited resource.

Health care is no different. It is not possible for everyone to get all of the health care they might desire whenever they happen to want it. So, we must — and, indeed, already do — ration health care. Consequently, when I hear someone say that the government wants to ration health care, I have no choice but to laugh. Rationing is a current reality.

What is really being confronted is not whether or not we will ration health care (since we already do), but more precisely how we intend to ration health care in this country. Generally, opponents of government involvement in health care believe that we should continue to ration on the basis of free market principles (i.e., ability to pay).

Now, I certainly believe that those who have managed to become financially successful should retain their freedom to choose more expensive health care services as they see fit. What I am uncomfortable with is our all-or-nothing system of market rationing. We have a very inequitable system wherein many individuals are effectively excluded from the system. Sure, they can and do get some care occasionally, but nowhere near what those of us with insurance experience.

Somehow, people have gotten the notion that government is going to put a cap on what type of health care benefits people will have access to in this country. There appears to be an overwhelming sense that limits will be put in place that limit choice. As Ezra Klein points out, however, we are talking about a floor and not a ceiling.

What this means is that government wants to set a guaranteed minimum standard that ensures that all Americans have access to certain essential health care services. In no way is the plan going to restrict how much care you can receive. Just as in other countries the world over, there will always be an option to “top up” — to purchase supplemental coverage. The well off will continue to have access to the best health care.

We already have a “safety net” system that helps provide coverage to those in need, but nets have holes. What we need is a safety blanket — an absolute guarantee of basic coverage for everyone. The market doesn’t have any interest in operating at this margin, because it doesn’t represent a profitable opportunity for insurers. It is all a matter of how well we intend to treat the least well-off in our society.

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