A Conversation with Leonard Fleck, PhD: Public Deserves Honest Debate On Rationing

A medical ethicist says it’s time to acknowledge that limited resources will cover limited services

Voicing the idea of rationing health care services is a political deathtrap, or so ethicist Leonard Fleck, PhD, has been told. Fleck, a professor of philosophy and medical ethics at Michigan State University, served on a committee that recommended to the Clinton administration that it lead a national discussion on the need for rationing. “The response we got back was that if we used the word rationing, we would kill health care reform,” Fleck recalls. “We were told we should talk instead about health care cost containment, efficiency, and getting rid of waste and fraud — all politically safe bits of language.” Those same terms are being used today, and they are still types of rationing, Fleck says. Our health care system is rationing services every day—and will have to do more of it in the future, he says, adding that it would be more honest and fair to have a national discussion on these issues. The author of Just Caring: Health Care Rationing and Democratic Deliberation (Oxford University Press, 2009), Fleck has led medical ethics discussions in communities and for health plan executives. In addition to serving on the White House Task Force on Health Reform in 1993, he has been a member of the Governor’s Task Force on Access to Health Care in Michigan. Fleck has taught in the philosophy departments at Indiana University-South Bend and St. Mary’s College in Notre Dame, Indiana. He earned a PhD in philosophy at St. Louis University and a bachelor’s degree from Loyola University in Chicago. He spoke recently with MANAGED CARE contributing editor MargaretAnn Cross.

Managed Care: The issue of rationing came up with the nomination of Donald Berwick, MD, to head the Centers for Medicare and Medicaid Services. Will his appointment lead to a broader discussion on this topic?

Leonard Fleck, PhD: Don Berwick is in favor of being more explicit about the need for health care rationing and the fact that rationing occurs now in our health care system — it’s just that it’s done irrationally and unfairly and in arbitrary kinds of ways. The goal of health reform should be to make those kinds of choices more explicit, more visible, and more publicly discussed. Berwick is capable of leading that discussion, but I don’t know if Obama’s political advisers will permit or encourage that. They are very skittish about getting anywhere near explicit talk about rationing.

MC: The recent health care reform debate provided an opportunity for politicians to address this.

Fleck: We didn’t get close to talking about it. What short-circuited the need for that conversation was the rhetoric around the language of death panels and the use of rationing as a kind of dirty word. The issue got very quickly politicized, which made it virtually impossible to have the kind of conversation that has to occur. As a consequence, the Obama administration had to emphasize that we are going to expand access to health care for 35 million Americans who are now without health insurance, and we are going to pay for it by rooting out waste and fraud and inefficiencies within the health care system. Those words are politically acceptable. They don’t raise the sorts of red flags that a term like “rationing” will raise. But the reality is that when we start talking about efficiencies and inefficiencies or what counts as wasteful medical care, we are very often talking about making rationing decisions.

MC: Does health reform make the discussion of rationing necessary?

Fleck: I think that the conversation will occur. What we’ve seen so far is an outline of what health reform is supposed to look like and what is supposed to be in place between now and 2014. Many decisions have to be made as to the range of health care services that we are going to guarantee to everybody who had been uninsured. To come up with a package that is affordable, we have to decide what interventions will be covered and under what circumstances. Those are rationing decisions.

MC: Oregon has tackled this issue, to some extent, through the Oregon Health Services Commission’s prioritized list of health care services. What have we learned from that effort?

Fleck: The major lesson from the Oregon plan is that the commission responsible for setting up the list was a politically independent commission. Because of that, they were able to have a much more honest and rational debate and assessment of things. We are going to have to have something like that in Washington D.C. for the United States. The analogue in the British Health Care system is an organization called NICE, the National Institute for Clinical Excellence. They serve as a kind of honest broker of assessing costly new medical technologies that are introduced and determining what their reasonable and best and affordable uses are.

MC: What are the areas in which rationing decisions are most important?

Fleck: These issues come up everywhere, and in a wider and wider range of clinical circumstances. One of the newer areas relates to genetics and cancer drugs. Some of these very expensive new cancer drugs respond well or poorly to the genetic features of either a cancer or the individual who has that cancer. That’s going to raise issues about the extent to which we should be providing these drugs — which cost from $50,000 to $130,000 or more for a course of treatment — to people who we know ahead of time are going to be poor responders. Are we going to give these drugs to anyone who can benefit even minimally from them? If so, we are talking about aggregate costs in the range of $50 billion to $60 billion per year. Or, are we going to put in place some limitations and do genetic tests on individuals to distinguish people who are more likely to benefit?

MC: It would be difficult to deny these drugs to patients who aren’t a good match.

Fleck: It would be very difficult for most people to accept a judgment like that because they will see the drug as a last-chance therapy, even if it is only buying a couple of extra months of life. At the clinical level, having to make those decisions is extraordinarily painful psychologically. What that suggests is that these choices really ought to be made in advance. We can help people understand why these decisions are made if there has been a broad public discussion about the relevant issues, the relevant tradeoffs, and what the public is willing to pay for. That’s part of what it comes down to: What does the public think is a good value for what are ultimately their tax dollars or their insurance premiums.

MC: What would a person involved in this conversation have to think about?

Fleck: When we consider these issues, we have to think about our possible future selves at risk for various cancers and so on. At the time, we don’t know what our vulnerabilities are relative to a future possible cancer and the drugs that might be on the market at that time. If we are in a state of relative ignorance, we can make more rational decisions about whether or not we want to raise insurance premiums or raise taxes to fund situations in which the drugs are provided to people who will benefit only marginally with a few extra weeks or months of life, as opposed to providing the drugs to people who would benefit with a year or two of extra life.

MC: What would the ideal public discussion look like?

Fleck: It would require public sessions say at weekly intervals over a three-month period of time. We need to make choices about what kinds of health care interventions and under what clinical circumstances we think are reasonable and cost-worthy. If you look at any one disease at a time, it’s very easy to say, we ought to do that. But very soon, you’ve gone over what people really are willing to pay for. We need to get the public to think through the kinds of tradeoffs that they are willing to make.

MC: Do you see Americans making a decision about what percent of GDP we are willing to spend?

Fleck: It’s hard to see that occurring in the next five years. What is more likely to happen is we are only going to allow for an increase of 1 percent above whatever the core rate of inflation is for health care cost increases each year. If that sort of decision is made, that does set a limit. And then different managers have to make certain that they come in under that limit. What limitations are they going to have to accept or impose? If choices like that come from the top down, then you are going to have a revolt from the bottom up, because people will not understand why particular choices were made. That is why much more of an effort needs to be made to educate the public about these kinds of choices and challenges and to provide them with the kind of accurate and fair information that would allow them to indicate what kind of tradeoffs they are willing to accept.

MC: Should health plans play a role in that education?

Fleck: If any one managed care plan says, we are going to have an honest conversation with our clients and members about limits, it would see its economic viability threatened. It would be used against them by their competitors. To avoid that, you need to have some kind of agreement among plan directors across a state or across a region of several states that these kinds of public conversations are necessary so they can occur within every health plan. I think that’s the kind of thing that has to happen.

MC: Are health plans making rationing decisions today?

Fleck: Yes. Insurance companies do make rationing decisions. They make decisions about whether or not they are going to cover a particular service or intervention under particular circumstances. They will sometimes use the language of a treatment being experimental as a way of softening the reason why they are not willing to pay for it.

MC: Would you encourage health plans to involve their members more in those decisions?

Fleck: I know that they struggle with these issues, and I would be an advocate for involving more plan members in making those kinds of difficult decisions. In practice, only a few plan members can make up an effective decision-making body, but I think that there has to be more of an effort to communicate with the broader membership.

MC: When you say rationing is a part of our health care system already, what other areas are you referring to?

Fleck: Back in 1984, when Medicare put the diagnosis-related groups in place, it was standard for somebody who had a heart attack to spend 10 days in the hospital. That’s very costly. Medical research suggested that people really didn’t need more than four days in the hospital, so Medicare paid for only four days. Statistically we know that a few people are going to have a second heart attack between day 5 and day 10. If they had been in the hospital, they would have had a good chance of surviving. But if they are out in the community, 30 miles from the hospital in some suburban cove with funny street names that confuse ambulance drivers, they might die from that second heart attack. So in effect, we said that the cost of six extra hospital days multiplied by 1.3 million people who have a heart attack in a given year is not worth the small number of lives that would be saved if everyone stayed in the hospital for 10 days after a heart attack. That’s a choice we made. Nobody really waved that fact around or called that to anyone’s attention. It would have been more honest to do that, rather than to simply say that those patients really aren’t getting any good from those extra days in the hospital.

MC: It looked like we were eliminating waste and inefficiency?

Fleck: Yes, that’s the language that is used. Another example being debated is implantable cardiac defibrillators. They cost about $40,000 a piece, and we implanted about 200,000 of them last year. That represents about $8 billion. This device is intended to shock a heart that goes into a potentially fatal arrhythmia back into rhythm, and it’s a great device that generally does what it is supposed to do. The problem is that for 81 percent of patients who have had that device for five years, the device has never fired. That means we wasted all that money. Now a medical test can be used to identify people who are 98.7 percent unlikely to have an arrhythmic event over the next two years. If we use that test, we can reduce by 30 percent the number of those devices that we implant. But the test gets it wrong 1.3 percent of the time. That means, if we want to save $2 billion to $3 billion per year by restricting who receives one of these devices, we would have to accept that several hundred people would end up having a fatal arrhythmia even though they were predicted not to. We have to ask ourselves: When I don’t know what my risks are for a fatal arrhythmia, would I be willing to endorse a rationing protocol that would say I may not be entitled to one of these devices, to save the health care system money that could be reallocated to other health care needs? The theme that binds all of these examples together is that we have to identify health care that yields only marginal benefits at a very high cost. We have to ask ourselves whether or not we as taxpayers, insurance premium payers, are really willing to pay for something either for ourselves or for our worst enemies.

MC: It is not only life-saving treatments that need to be rationed?

Fleck: We are also going to have to make decisions or put in place financial incentives that are designed to motivate physicians to make decisions about a more judicious use of expensive radiological diagnostic technologies, such as MRI scans, CT scans, and so on. Those diagnostic technologies are very useful, but they now represent $200 billion in health expenses per year, which is a huge increase from where those technologies were 15 years ago. There’s lots of stuff like that that is going to have to be talked through. It would be better to have those choices be made in ways that are visible, that allow for public understanding, public debate, and public decisions rather than simply having them emerge from somewhere in the bowels of bureaucracy. Then it feels to the public that this is being imposed on us.

MC: You’ve also talked about how the uninsured are affected by rationing.

Fleck: One form of invisible rationing is when people lose their health insurance. If they can’t afford to go out in the market and buy individual policies that provide reasonable coverage, they are at risk for being denied access to needed health care. Studies from the Institute of Medicine have shown that somewhere from 22,000 to 40,000 Americans per year have been dying primarily as a result of being uninsured. They hold back from getting timely primary health care for diseases that are treatable when they are diagnosed early. Instead, they wait until the symptoms are such that they no longer can bear them. The disease has now progressed to a stage where it is no longer curable, and so they die prematurely. From the point of view of an obituary, their death is from cancer, and it is regrettable. It doesn’t look like this was the responsibility of government or an employer or anyone else in society, so we don’t give it a lot of moral attention. We don’t think about it as a rationing decision, but in fact that is what has happened.

MC: Thank you.

The reality is that when we start talking about efficiencies and inefficiencies or what counts as wasteful medical care, we are very often talking about making rationing decisions.

Most people want someone else’s health care costs controlled, but not their own.

Our most popular topics on Managedcaremag.com