Interview Jerome Groopman, M.D.

Jerome Groopman, M.D.

The chief of experimental medicine at the Beth Israel Deaconess Medical Center, specializing in cancer medicine and blood diseases, he is a professor of medicine at Harvard Medical School. This is an edited transcript of an interview conducted on May 18, 2010.

Talk about the uncertainty of medicine and what doctors call the "tail end of the curve."

There's a great deal of variability, both in each individual with regard to his genetics and his environment, and in how any illness or disease operates within that person. So there's a tendency in medicine to look at averages and statistics, and that is basically an accumulation of entire group, but it doesn't necessarily pinpoint the individual. And importantly, for every disease, there's always a "tail end of the curve," so to speak. There's a group of people who defy expectations.

“Potentially life-threatening diseases are almost all combated with treatments that may work but may really harm people. That tension, you just feel it rip your heart.”

So I think we have to be attentive in how we care for and advise people with regard to trying to customize and personalize treatment, with regard to the biology of their illness as well as their personal need and preference, but also keep in mind that we shouldn't be rigid, that there is this tail end of the curve.

What is its importance in medicine? By chasing that "tail end of the curve," we make discoveries?

There's very stark and important advances that have occurred by very much chasing that tail end of the curve. Severe diseases like leukemia, initially treated with chemotherapy, might have a 5 percent or a 10 percent improvement. Some people might say, "Well, that's meaningless." Of course for the individuals in that 5 or 10 percent, it's 100 percent. But it's not only to help patients, which of course is the primary goal, but it's to learn from that and try to build on it and expand, and then move to 15 percent or 20 percent, because generally in medicine, progress, advances occur incrementally, in small steps. There's rarely a eureka moment with this dramatic breakthrough that just shifts the paradigm.

[What is the place of medical discovery today?]

There's an almost schizophrenic mind-set currently. You have people being told that they should be treated as individuals -- which I deeply believe in -- and that the power and potential of medicine should be mobilized because each human life is sacred.

On the other hand, you have the view from the population from 30,000 feet, saying, "Well, is it really worth paying for this drug if only 15 or 20 percent of people improve?"

Britain has a group that assesses the utility of treatment and says that unless a drug extends life or remission a year at a cost of $44,000 or less, they don't approve the drug. Of course that's an average. First, what about the tail end of the curve? What about those people who live two years or three years? I currently have a patient whom I'm treating with a severe bone marrow disease who is living three years -- very productive, high quality of life -- with a drug called Vidaza, which is not approved in England because it's thought not to be beneficial. Should she not be afforded that opportunity?

And yes, there are limited resources, and yes, we have to be cognizant of care and its costs. But I think there are smarter and better ways to treat people than to put a fixed price on a human life.

Why is the cost of dying a lightning rod in the health care debate? What is the reality inside the hospital?

I think there are many degrees of separation when you get at Medicare data on expenditures at end of life and so on, and what is very glibly termed waste -- "30 percent of all care is waste." That's the new mantra, which comes to some degree from the Dartmouth study, which I've read -- one of the few people who talks about it, outside of the health care economists and the experts, who's a clinician, who's looked at it. It's very hard to know what that means, and it's very hard to bring that out of Washington into a hospital and at the bedside.

Editor's Note: Read the 2008 Dartmouth study, "Tracking the Care of Patients with Severe Chronic Illness," here. [PDF]

And I think instead of having this rigid and assertive discourse, that it's a waste to treat people at this point in life and so on, we should really be encouraging conversation and interaction and a move toward a joint understanding of what are the goals of the person who is ill -- How does his or her family and social setting fit into that? What does he or she understand about quality of life at that point? -- and having that kind of deep, intense and, frankly, ongoing conversation.

It's not like, OK, I want to do everything, so then you switch to everything; or I want nothing, and you switch to nothing, because there's a great deal of research that shows that people's preferences and thoughts at this point in life fluctuate a great deal and can vary if they're in terrible pain or depressed that day, and then if they're visited by a grandchild and there's a prospect that they might go home, they want to do more. It's not this static kind of situation. It's very dynamic. It's very personal. It's very intense.

I think we need to be cognizant about cost of care and so on, but not in a way that sacrifices true caring and bringing the person to a point where he or she can make a really considered and meaningful choice.

Talk about the dilemmas of treatment when chances of survival may be very small.

In many ways, it's easier for the doctor to keep doing things. It avoids the difficult, honest conversation with the patient and family about what the likely chances are of success and what the impact of further treatment is on the person. No one can see the outcome. We're always dealing with probabilities and uncertainties.

I recall that one of the physician professors at Harvard had developed a very aggressive and extensive stomach cancer, and I was a young oncologist on the faculty. Speaking with my peers, I said, "There's just no reason to treat him." He insisted on treatment, and I thought it was simply futile. And he lived 18 years in remission with a very high quality of life. He was at that tail end of the curve.

So my feeling is not superimposing my concept of what is best or not best at that moment, but to begin with an exploration of both the understanding of the treatment, the understanding of the likelihood of outcome, how much the person believes he or she is willing to take on to try to emerge from this, and then to fit it into both the clinical data as well as the emotional space, and then revisit it on a regular basis. Again, it's not a fixed and static kind of conversation.

[Can you talk about how things which appear futile can drive discovery?]

You look at the most severe diseases, leukemia or melanoma, and with mainstream treatments, most people did not do well. But then there would be that small group that defied expectations that had a long remission and sometimes even a cure, unexpectedly. That then sparks the clinician and the scientist to see opportunity in what otherwise may be a very dark tableau and ask why: What's different about the tumor? What's different about the patient? What's different about the way the treatment was given? And addressing those questions and trying to repeat the success again, even though it's at the very tail end of the curve, is what often drives medicine forward and leads to discovery.

And that informs other fields of medicine, not just oncology?

It informs many, many fields of medicine. It also opens the eyes to serendipity, the unexpected, [like] the trial of a drug, which might not seem to be particularly beneficial.

For example, in oncology there's a drug called Gemzar [or] gemcitabine. Initially it was tested in pancreatic cancer, an often quickly fatal malignancy, and people saw a small improvement. Many said, "You know, it's just not worth the money; it's not worth the effort," and so on. But the drug was then tested in other cancers -- breast cancer, ovarian cancer -- and it's become extraordinarily beneficial. If people had approached it as futile and given up, all of those women with ovarian cancer and with breast cancer who currently are living very good lives would not be with us.

What about the idea of a cutoff? How do we know where it should be?

I think that all of us, as physicians grounded in science, know data. We know numbers, but we also know the limits of the numbers, and the impossibility of extrapolating from averages and cutoffs to the individual. It's an issue of probability, but not at all certainty.

So when I speak with a patient who has a severe illness and a very advanced illness and still wants to live, and still wants to try, and still has the energy and desire to fight, I'll lay out in very honest terms that it's a long shot. But I think it's wrong to say, "Here's a discrete cutoff," and "Because it's only 10 percent or 15 percent, it's not worth it."

I think what's also important is that we establish from the outset that treatment is a train that you can always get off; that once we begin, if it doesn't seem that the drug is working and/or the side effects are so severe that the quality of life is diminished significantly, then we have the conversation again.

Is it really likely that we're going to be in that small group or not? Is it still worth trying? How is it affecting you? That kind of honesty and that kind of flexibility and that kind of customizing to the individual person is the way to help people at this point, because sometimes you do succeed, and sometimes they are in that small group, and it makes all the difference.

Bone marrow transplant physicians bring people to the brink of death in order to save them. That makes treatment decisions even harder.

I think that physicians who perform bone marrow transplants and care for patients have a deeper understanding not only of how severe and awful the treatment can be, that you bring people truly to the cusp of life, but also how they can return and the extraordinary capacity of the human body to heal and improve. So that if you were to go into the room of someone at the very bottom in the course of a transplant, with all of the most horrific complications, you could easily throw your hands up and prematurely say: "Oh, this is torture. You're just doing things in a meaningless, futile way." But then you could fast-forward to the image of what that person might look like a year or two hence, when he or she is again fed and not skeletal, when their skin is not blistered and red but intact, when they're not having just relentless diarrhea and mouth sores and all of the other terrible, terrible complications, but they've been restored, resurrected in a way.

I think that this kind of treatment, in a certain way, epitomizes the complexity of the science, the emotions, the individual, and the difficulty in trying to standardize decision making and to look at choices in a fixed, static way without understanding the variability from person to person. The fact [is] that the bone marrow transplant centers are among the greatest innovators in medicine, bringing new approaches, new protocols, new drugs to the fore in a very quick way so that people who could easily be written off are restored.

In the drive to save lives, are we always at risk of prolonging death?

I'm thinking of a just extraordinary woman who I helped care for over the past few years, who had a rare cancer. She was told very glibly by a doctor: "I don't think you're going to live more than four to six months. It's not worth doing anything. This is extensive, it's rare, there's no clear treatment, and basically use the time you have, and then die." She had an enormous will to live and reason to live.

I think very frequently patients are told [this]. Essentially the doctor is handing down a death sentence and taking away not only hope but any opportunity to marshal the will to live and to try and to defy the odds, and patients will be treated and not conform to the statistics or seek a new experimental therapy that changes the paradigm.

On the other hand, you have to be careful not to appear as a presiding judge who has this divine understanding of what is going to happen to that individual, and the fact that there may not be -- or there will not be -- a new or different way of treating. You have to be careful not to hold out false hope.

With medical advances, that's a tension seen in every field?

It animates it in many ways. Certainly as a blood specialist, a hematologist and a cancer specialist, an oncologist, it's closest to me, but it's seen in other fields. It's seen in heart disease. It's seen in autoimmune diseases like lupus. It's seen in transplant of liver or heart or kidney. Medicine is in an enormous period of growth and change. We can't predict where the next advance will come from or when, but they're coming.

Faith in medicine is powerful. Does the will to live trump almost everything else?

I think it's very true that [within the] cool, calm confines of the think tank or a seminar room, where there are theoretical discussions about care for people with severe disease who have gone through many standard treatments, it is very, very different from the intense, emotionally charged place that patients occupy within the bed, who want to live, feel they have reasons to live, are willing to fight to live, and endure a great deal.

As a doctor, you need to work with people around that; you need to try to harness it; and you need to understand to some degree their autonomy and their choice at that moment, because sometimes you do succeed, and sometimes they do emerge. And how much they're willing to take on is really a choice that they make for themselves, with as much information as you can give.

The other side is that if the odds are slim, does the physician have an obligation not to offer further treatments?

There may also be a time that's reached where the options don't really exist, and you have to accept that there is nothing more meaningful to do in a clinical way. So I don't believe that you just treat endlessly, but how you determine that is not a simple, direct, cookbook, formulaic way of doing things. Everything now in health care is metrics. When we come to this point, it doesn't operate that way. There's a tremendous pressure now to reduce care to numbers, as though there's an algorithm for every decision.

I think there are better and easier ways that we can save money in care without compromising individual needs and without providing dictates about who should be sustained and who not, at different points. Frankly, savings can be accrued through things that everyone agrees with, like preventing infections in a patient through catheter care, which apparently costs huge sums of money.

Those decisions should still be made by the individual, [a] caring, competent physician and a person whose goals and preferences are very much center.

Is that model sustainable?

I think there's going to be enormous pressure and tension. There is certainly a move in countries like the United Kingdom, where a specific price is set on a treatment. To my mind, it ignores the needs and the reality of care. But there's no doubt that there's a very large group of economists and physicians/policy people who see things through these lenses, and are very remote from the individual, and want to erase uncertainty and variability.

We do so at our peril?

I think we do. First, because we move away from thinking about the individual. But it's the individual who still is the center of care, who, to my mind, is the purpose of medicine.

We also risk not learning. There's a certain hubris, a certain arrogance to thinking that the past is always prologue; that because in one setting, with an initial treatment, it only worked beneficially for X amount of time in 10 or 15 percent of people that it's not worth pursuing. But medical advances, real progress occurs through building on that, refining it, pushing it forward. And we risk negating that, mortgaging the future because we're too fixed on these numbers and on past failures rather than the potential for future success.

What are American expectations of medicine?

We are a society and a culture that cherishes the individual, that believes in the sanctity of each life. It's a belief that I hold very deeply. We're also a country that is the most innovative with regard to medical science. More discoveries and more advances, particularly in treatment, are coming from our shores. And we should be very careful that we don't abandon the potential for continued progress by reducing everything to a bean counter's mind-set, because many times in science we fail, and failure costs. Human life is not saved. It also costs in dollars and cents. But by failing we learn where to look for success.

And those expenditures are necessary. It's an illusion to think that we're going to be able to do this in a seamless, facile, "cost-effective" way. Scientific progress is not cost-effective. That's the reality of it, because most of the time we don't succeed. So we risk being frozen in time and relinquishing the promise that so much new medical science offers, because we're worried about "waste"; we're worried about trying in what seems like a difficult situation.

To my mind, there are important, meaningful ways to save money. I'm not oblivious to the fact that expenditures need to be reined in. But you have to be very, very careful not to just paint with a broad brush and label as futile or meaningless or not cost-effective enough some treatment or some protocol or some attempt to push the envelope, because otherwise we will stand in place.

You only know in retrospect.

There's a terrific observation from Kierkegaard, who said: "Things are only understood by looking back. The problem is, you have to live looking forward." So you can say, "Oh, yes, that drug wasn't really worth testing because it didn't pan out, or you didn't move from the 10 or 15 percent to the 20 or 25 percent meaningful remission." But you only know that in retrospect. And progress is made by going forward on many fronts in a very determined way, in partnership with people who understand the risks, who understand the difficulties, but also understand that nothing is certain and fixed in medicine.

You only know in retrospect. And so you celebrate and try to learn from success, but you're also cognizant of the fact that for each individual it's an unknown at the moment in time when you make a choice.

Many patients we followed died. How do you view that?

A lot of the analysis, which has been touted through health care reform, is all look-back, retrospective. It's a skewed, biased analysis, because it looks primarily at people who died. But you don't know who is going to die and who is going to live, and you don't know for how long.

It's too easy from the outside, looking back, to second-guess. The truth is that in the moment you don't know, and you need to give as much good information as possible, and then a choice is made. So long as the process is right and meaningful to that individual, then ultimately the decision is right, because we can't say what's going to happen beyond probabilities. And those probabilities may seem daunting, but to the individual, that four months or six months might be extraordinarily meaningful, and I'm hesitant to take that away.

Each field of medicine has its dark side. In oncology, where is that?

In my own field, cancer medicine and blood diseases, there is a tremendous human cost of the drugs we use, the impact they have on the body, and the fact is that for many patients they don't succeed. We know that, and we recognize it. And it's heartbreaking. ... That is the burden, the weight that you take on when you do this kind of medicine.

You try to explain it to the person and to the family and come to agreement before you embark, but you never know where you're going to end up. And you celebrate the successes, and those buoy you and keep you going, but you also know that many times that's not where you are. And there's a gnawing sense of potential regret. Was it really done right? Should we have done this? Where are we now? And did I do what was best? It's inescapable. It's the reality of the field and the uncertainty of the medicine.

And it's not restricted only to cancer medicine. It's true in organ transplant, whether it be liver or heart or kidneys. It's true in intensive treatments for heart failure, for neurological diseases, just the whole spectrum of medicine; that once you move away from the less severe and the mundane and deal with diseases that are potentially life-threatening, almost all of those maladies are combated with treatments that may work but also may really harm people. And that tension, you just feel it rip your heart.

On the other hand, you know you're trying and you're doing it, hopefully, for a purpose. And you're doing it with the hope, again, that for that individual it will succeed, and that through that success you'll learn something as a physician and scientist, which then can help so many others. But you cannot escape the reality that too often success is not the case and that the end is not such a wonderful, gratifying picture but rather a person who was brought to the edge of life and couldn't be brought back.

The mixed blessings of our progress.

Progress is made through failure. Success comes out of failure. It's the paradox of science. You learn most by going back and re-examining why things didn't work, what you might have overlooked. What was it about the tumor that resisted the treatment? And then you look for its Achilles' heel as opposed to going right against its armor, which repels what you've done.

In our quest to extend life, we will always be on that sharp edge.

Modern medicine exists at that edge. It exists with the quest to change the world, to change a grim reality of a disease for an individual patient. And many times, success, to bridge that chasm and go back to a fulfilling life, means bringing the person to the very edge of the precipice.

Without the willingness to be on that edge, there is zero chance of success and, in the patients we've been following, no chance of survival.

We don't know what will happen for any individual. We can look at probabilities and chances. But the way progress is made, the way advances occur very often in combating these severe, life-threatening diseases requires going to the very edge and pushing very hard. When we fail, it's emotionally devastating, but science only succeeds by understanding that failure, probing it, looking at why we didn't succeed, and then remaking it and trying again and pushing again to the edge.

And for dying patients, it's certain death versus the possibility of a cure?

Patients with severe illness often, after being informed and clear-minded, will say: "Yes, I'm willing to try. I have that will to live. My life is meaningful to me." And they will go with you to the edge, even for that small hope, that small chance that they'll beat the odds and they'll be the one who will emerge. Often they're not. But sometimes they are.

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posted november 10, 2010

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