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A Doctor's Stories

A conversation with Jerome Groopman, an acclaimed doctor, researcher, and writer whose new book offers a rare inside view of modern medicine

March 8, 2000

Jerome Groopman begins his new book, Second Opinions, with a description of his own experience as a patient when he was just beginning his career in medicine. While training for the Boston Marathon, Groopman started experiencing a sharp and debilitating pain in his back. Ignoring the advice of his physician wife and several other doctors, who suggested that time would be the best cure, he instead found an orthopedist who promised to perform an operation that would have Groopman up and running in two weeks. When the anesthesia wore off, he found himself in the intensive care unit barely able to move his legs -- and was forced to lie on a bed of ice for three months to control the excruciating pain.
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Twenty years later Groopman still feels the physical effects of that operation, and it forever changed the way he thinks about medicine. A specialist in cancer, AIDS, and blood diseases, Groopman often recounts this experience to his patients, because, as he writes, "It brings me closer to them, knowing that I was on the examining table, swept up in the same tempest of confusions, fear, and frustration, vulnerable to all sorts of advice." Groopman believes that good care is based, above all, on trust and a melding of the intuitions of doctor and patient. Of course, Groopman realizes as well as anyone that individualized, time-intensive care is hard to come by in today's medical system. That's why he's written this book, which is designed, as he writes in the prologue, to "provide an inside view of the complex and rapidly changing world of medicine and thereby help people make informed decisions."

The eight stories collected in Second Opinions, each about the experience of one of his patients, cover many controversial issues of modern medicine. What do you do when two doctors disagree about the same data? What happens when an HMO won't cover a potentially life-saving treatment? How do you question a doctor when you think he's wrong? How can doctors and patients face the issues introduced by an ever increasing flood of genetic data? What makes these narratives so compelling to read, though, is not so much their topicality as Groopman's skill at recounting stories, and the emotional candor with which he tells them. Groopman captures both the gripping detective work of piecing together diagnoses and treatments and the drama of the ways in which his patients face their life-threatening diseases.

Groopman started writing in his mid forties, to help himself make sense of his patients' stories and to ease a growing feeling of restlessness. In his first book, The Measure of Our Days (1997), Groopman examined the different roles that faith and spirituality, or lack thereof, played for eight of his patients as they struggled with deadly diseases. Some of the narratives in both books have appeared in The New Yorker, for which Groopman writes a half-dozen articles a year on medicine and biology. In addition to writing and seeing patients, Groopman is the Chief of Experimental Medicine at Boston's Beth Israel Deaconess Medical Center, one of the world's foremost research facilities in cancer and immunology. Groopman's lab is best known for its role in developing protease inhibitors, which have radically improved the prognoses of many AIDS patients. He lives in Brookline, Massachusetts, with his wife and three children.

Groopman spoke recently with Atlantic Unbound's Katie Bacon.

Jerome Groopman    

In Second Opinions you describe how a botched operation you underwent gave you "an abiding sense of humility about my profession," as well as a sense of the anger and fear that patients often feel. Could you talk about how this experience affected your career?

It absolutely changed my career. That's why the opening line of the book is something like, "My first experience as a patient was just as instructive as all my classes in medical school." No one wants to be ill. No one wants to be a patient. But it is an extraordinary experience for a doctor. I felt the emotions that I think most patients feel, particularly when they're facing a very uncertain and potentially catastrophic event, which in my case was the possibility that I wouldn't walk again, or that I'd live the rest of my life in severe pain. What I learned from it is how as a patient your thinking can be very clouded. Even I -- who have a technical background and who in another role can be sober, judicious, and prudent -- acted impulsively and was susceptible to pursuing what I wanted to hear, which was a quick fix. The second thing I learned is that intervention is not always the best course -- sometimes it's good to step back.

I also experienced the power of language, the power of gesture. By language I mean both spoken language and body language. Patients are unbelievably sensitive to every nuance of a caregiver's demeanor. When you're a patient you hear things selectively, and you study the doctor's face to learn not only what he's saying, but what you think he's not saying. You hang on every word. Language is powerful in terms of focus and healing. I would not have appreciated that as deeply as I do now if I hadn't been a patient.

We're taught in medical school to project this image of power, knowledge, and control, and it's important to be strong, to have a plan, and to explain it and proceed, but I also think it's important to explain explicitly to people the uncertainties and the risks that are involved in the different choices. They certainly weren't articulated to me when I jumped ahead and had my operation. It was an extraordinarily painful, frightening, and for many years debilitating experience, one that profoundly altered the way I practice medicine and the way I care for people.

You write, "A clinical compass is built not only from the doctor's medical knowledge but also from joining his intuition with that of his patient." It seems to me that often in modern medicine (especially with managed care) neither patient nor doctor really has the chance to develop this intuition -- appointments are quick, and doctors don't always have the time to get to know their patients. How can patients make sure their intuitions about their conditions are part of the clinical conversation?

I think that a physician who does not seek a patient's intuition puts himself at a disadvantage in terms of coming to an accurate diagnosis and formulating the best possible treatment plan, meaning one that's not only scientifically sound but also that conforms to the beliefs and needs of the person as an individual. In the current system, which is a catastrophe, where medical visits are measured in single digits -- six or seven minutes -- it's very hard for a doctor to learn enough about a patient. One of the reasons I wrote the book was to present the argument that listening to a patient's intuition is a vital part of care, and if it means adding another ten or fifteen or twenty minutes, in the long run I think that's actually quite cost effective, for the following reasons. One is that you're more efficient, you're more able, as I said, to elicit the kinds of symptoms that will direct you to a diagnosis. The second is that there's a tremendous problem with what's called compliance. When you see someone for six minutes, and you glibly write a prescription, hand it to him, and say go do this, adherence to that treatment is often very poor. If you draw out from the person what his feelings and needs are, and you make sure that the treatment program that you're designing with him conforms to his needs, there's a much higher likelihood that he'll follow through. There are a lot of clinical symptoms that are related to emotional state, and if a patient feels cut off from his doctor, if he feels that his sense of what's going on is not being addressed, I believe that's deleterious for his own mental health. I know that there's a lot of pressure, I know there are HMOs, I know there's managed care, but frankly, I think it's time to go to the barricades and say, "We're not going to accept this kind of care."

What should a patient do if he feels his intuition isn't being taken into account by his doctor?

You say to your doctor, "I want some extra time with you. I need some extra time." Patients need to be encouraged to be bold and to say, "I believe that expressing to you what I'm feeling will be better for me, and will help you as a doctor." Now if a physician rejects that, or dismisses it, then he shouldn't be your doctor. I don't want a doctor like that. I think that the reluctance, the hesitancy, and the burden that patients feel to articulate their intuition would be alleviated if patients believed that by so doing they're actually helping the doctor, and if the doctor saw that as an important contribution to his work, he also would be more open to it.

It seems to me that that would require a sea change in the way doctors and patients relate.

Absolutely, and I want that sea change. Certainly a physician has information, knowledge, and skill from his or her training, but it only works well if it's a partnership. You need to communicate, and one of the platforms for communication is this intuitive sense. All of us have a deep sense of our own bodies and our health. It's probably physiological. There's probably neurological feedback that comes from our muscles, circulation, heart, and so on. When you sense something wrong, something off, it's very important to express that to your doctor. And if the doctor's telling you something that doesn't make sense, you've got to question him. It means either he doesn't understand your problem, he didn't explain it well, or he might be wrong -- or if you're wrong, it's his responsibility to explain why.

Because you specialize in blood diseases, cancer, and AIDS, you're often unable to save your patients. These narratives make clear the emotional attachment you have to many of those you treat. Why did you choose to specialize in these illnesses? How do you deal with the emotional difficulty of your job?

There are different dimensions to it, different reasons. One is that when I was training -- I trained at Mass General Hospital in the mid to late seventies -- oncology was a backwater, it was basically hospice care. There was almost no knowledge, it was thought to be a very crude, primitive kind of discipline, and a lot of people were discouraged from even going into it. That's what attracted me. Here was an incredibly important and prevalent set of diseases that took lives and where there was a crying need for real knowledge, and a desperate need for therapies that are rational, targeted, and much less toxic. I think we're on the cusp of that now, some twenty years later. But it was hard for me to see people who had these illnesses and to realize the dismal interventions that existed in the medical profession.

It's emotionally very difficult, there's no question about it. When I see a person who suffers from these diseases and dies, it takes a toll. You rationalize and say, "I'll go to my lab and work harder, and we'll discover something and make a difference." That's what happened with HIV. The death rate has fallen 90 percent. We need to do more and these drugs won't last forever, but there was a time when people said you couldn't even develop drugs against viruses like HIV. The same has to be done for breast cancer, ovarian cancer, leukemia, and other diseases.

There's also an extraordinary power and dignity to many of my patients that I find bolsters me, in a paradoxical way.

Your patients receive care in an ideal medical setting: you work at one of the best medical centers in the country; you don't have to worry about "cost-effective algorithms" designed to discourage you from ordering expensive diagnostic tests; and you invest a great deal of energy and thought in each patient's case. What advice do you have for those patients who aren't in such a fortunate situation?

I think people who are in less fortunate situations need to be bold and need to demand second opinions. The more educated you are about your illness, the more aware you are of your body, the more opportunity you have to help yourself. It's not even a question of money. Sometimes people who are very wealthy or famous can get terrible medical care, because there are nefarious agendas at work. For instance, I tell the story of Robert Beckwith, whose disease was misdiagnosed by a local hospital that wanted to keep him under their care because he was a big donor. There's no doubt that there is an enormous inequality of care. But you can get good care if you're poor, if you know where to look.

What advice would you give people who are in HMOs? Supposedly they're good, except for people who are very sick.

I don't have a glib answer about the mess the current medical system is in. If you're generally healthy, by and large HMOs are fine, but if you have a very complicated problem and need to see a specialist at another center, it can be difficult. And the truth is that money is put above the interests of the patient -- that's how it works. Now all the HMOs are collapsing. I don't have an answer, but I think with the coming election there has to be a really serious reexamination. This country is so wealthy now and there's such a surplus of resources. I can't imagine what's more important than health.

How do doctors react when a patient says he wants a second opinion?

You take the measure of a doctor when you request a second opinion. As a physician you have to subsume your ego; you make yourself vulnerable. Someone can disagree with you, someone can see something that you overlooked. There are different ways of doing things in different institutions -- different styles, different cultures. Someone else may have a more effective way to communicate with the patient. But a second opinion is absolutely vital, and if there's one major lesson of my book it is that when you're dealing with a severe illness, a life-threatening disease, when you're looking at experimental therapy where there's grave uncertainty of outcome, it's essential to get a second opinion at an institution different from the one where you initially were seen. If a doctor tries to block you or discourage you, or make you feel like you're insulting him, then he shouldn't be your doctor.

When a patient asks for a second opinion it means that another perspective would help, that the patient doesn't trust what he or she has been told, that the doctor hasn't communicated well, or that there's a severe level of anxiety, which also needs to be addressed. So whatever the genesis or significance of the question, it needs to be taken seriously by the physician.

You point out that the science of genetics is moving so fast that the knowledge we are now able to glean from DNA "can outstrip the physician's ability to state a prognosis and offer validated therapy." For instance, in Second Opinions you recount the story of Karen Belz, who knows through genetic testing that she carries the BRCA gene that predisposes one to breast and ovarian cancers, but as of yet there's little evidence whether or not a mastectomy and ovarectomy would lower her risk of getting the diseases. In what ways can doctors and patients deal with gaps between scientific knowledge and its clinical applications?

Here intuition and the individual needs of a person are especially important, because information is so limited. Since the time I wrote that piece, we've gathered more data showing that mastectomies and ovarectomies are useful in preventing cancer in women with a defective BRCA gene. But still, for a male doctor to sit there and say, "Well, here are the data, and it looks like we should take both your breasts off and take your ovaries out" -- that's a pretty heavy thing. What is it that gives your life meaning and substance? How do you perceive your own body? How much risk are you willing to take in life? Would you opt for medical treatment that might induce an early menopause to try to block estrogen production, instead of surgery? Are you going to take the chance that in the next five or ten years science will come up with a better way of doing this? There are no blanket answers that apply to everyone. It's critical for a person in this kind of a setting to work with her doctor and her family and friends and figure out what's best for her.
From The Atlantic's archives:

"Good News and Bad News About Breast Cancer," by David Plotkin, M.D. (June 1996)
"Women are more alarmed than they need to be about the chances that they will develop breast cancer. But they are also more confident than they should be that the advances medicine has made in treating the disease and prolonging life mean that it can be cured."

We expect that the entire human genome will be decoded in the next five to ten years, so all of this genetic information will be dumped in our laps without available treatments. This is one of the hardest areas. It's one that we're all going to face. I also think that in the next few years there will be changes in the way we treat breast cancer. Our lab has a major program in women's cancers, and we've discovered a novel gene in breast cancer that is very interesting. Eighty-five percent of people who have breast cancer have this gene. We've made some major strides in figuring out the three-dimensional structure of the proteins, so now we can start to try to develop drugs. This just happened last week. We have a paper going to press about how ovarian cancer cells spread; ovarian cancer spreads very quickly, and we think we've figured out one reason why.

How do you decide when you should try that last therapy that might preserve or extend a patient's life and when you should start palliative care? Has the growing hospice movement affected the way you practice medicine at the end of a patient's life?

This is very difficult. The first thing you always have to make sure of is that you're not trying that last therapy for yourself, because it's the easy way out, or makes you look heroic. It's very hard to say to someone, "I think we've reached the point where we should just make you comfortable." To help a patient make such a decision you need to have a very close relationship with him. Your understanding of him as a person assists you in interpreting your own intuition and their intuition. You have to be able to sense the patient's life force. Do they teach you about life force in medical school? Can you measure life force with a CAT scan?

The hospice movement is an absolutely wonderful one in terms of making the last days of a person's life tolerable. Hospice nurses are the heroes and heroines of that period, because they are expert in alleviating pain. They're very good at family dynamics, and they offer comfort. I think in a way it allows the physician to more appropriately, more comfortably, move a person who is terminal, and for whom further treatment would only be painful and inappropriate, into that last step. Because if there's no hospice, as a doctor you think, Who's going to be there? Who's going to take care of the pain? How are we going to get them home? So you just keep them in the hospital. If you keep someone in the hospital, the tendency is to keep up the appearance of active treatment until the person dies.

How do you help a dying patient prepare for his death?

You need to get a sense of how a person perceives or imagines death, how religious the person is, whether there are things that need to be reconciled. All of that is important preparation.

In The Measure of Our Days, you describe a woman with breast cancer who refuses to undergo chemotherapy and radiation, because she believes that her embrace of Taoist teachings will heal her. It seems that there is often a fine line between the much-needed hope that alternative therapies can give patients and the harm that relying solely on them can cause. How do you react when people turn away from traditional medicine in favor of alternative therapies?

In terms of alternative therapies, I see it in two ways. One is, I'm a scientist. And botanicals, for example, are important sources for drugs. Digitalis, which is essential for heart failure, comes from foxglove. Vincristine, which is an important drug for lymphoma and leukemia, comes from periwinkle. Taxol comes from the Pacific yew tree. Three thousand years of Chinese empiricism -- these guys are not stupid. There's a lot of interest in trying to figure out what the active components are in these touted herbal therapies.

But at the same time there are also these waves of enthusiasm and fads. No one talks about Laetrile anymore. In the late sixties and early seventies, the touted alternative for curing cancer was Laetrile -- extract of apricot pits. After a while it was clear it wasn't curing anything. And Steve McQueen, when he had end-stage cancer, went to Mexico and had coffee enemas -- that was another "cure." So you get these ferociously touted alternative treatments that have no scientific basis.

People say, "If they're desperate, why not play along with the charade?" I strongly disagree with that, because I think it robs people of truth, it robs them of dignity, it's patronizing, it's paternalistic, and in the end, when the sky comes crashing down, when the Laetrile doesn't work, they've wasted money, and they've wasted the most precious thing, which is time, running to Mexico or the Bahamas for treatments that aren't real, instead of being with their family and their friends.

I'm not closed-minded. I don't know if you ever read the piece I wrote for The New Yorker, called "Dr. Fair's Tumor," about a surgeon at Sloan-Kettering Cancer Center who was a real die-hard, stubborn guy who had no interest in alternative therapies, and dismissed them all. He developed colon cancer, went through chemo, and the chemo didn't work -- the cancer metastasized to his liver. He was hanging in the breeze. He had his own cells harvested in the operating room and taken back to his laboratory. He started screening all these alternative treatments, and found one that had been touted in China by the last physician to the last emperor. It turned out that there was something active in this concoction which shrunk his tumor cells in a test tube and in mice. He's been on this therapy, and he's been completely stable for almost three years. Now the burden is to figure out what the active ingredient is. That's looking for real hope outside of traditional medicine.

But there's a pernicious dimension to some alternative therapies, and that is that they put the blame on the patient when they fail. They charge you $200 a visit for you to visualize your cancer cells disappearing, take macrobiotics, and try vitamins, and then they say, "The reason this doesn't work is that you don't have enough faith in the treatment." That's really unacceptable.

What inspired you to start writing? What is it about setting these stories onto the page that appeals to you?

First it was the usual male midlife crisis. I'm in love with my wife, I don't want a red Corvette, but I was sort of restless and wanted to do something different. I also felt that I had extraordinary experiences as a physician. I was inspired by the people I cared for. I wanted to make sense of these stories. Narratives are very powerful in terms of reliving experiences and trying to improve yourself as a person and as a doctor. I feel I'm a better doctor because of my writing -- it helps me understand my mistakes. Also, the families and friends of my patients who died saw this as a memorial to them; it continues their life in a way. There are a lot of dimensions to it. Some of it is emotional, some is pedagogical in terms of self-learning, and some of it is trying seriously to contribute to others.

Most people don't know the inside world of medicine. Second Opinions reveals an awful lot that goes on -- about what doctors' agendas can be, what they think, how systems work, what's risk management, how lawsuits happen, how you have to navigate all that. And why shouldn't people know all this? Medicine is an extraordinary domain, and I thought I would write about it as best I could. I'll tell you, when I started writing, I wrote three chapters of the first book, showed it to two or three friends at work, and they said, "Oh, this is compelling and riveting and brilliant." And I showed it to Pam, my wife, and she said, "These are awful." She was right -- they were terrible. She said, "Can't you write a simple declarative sentence? They're convoluted, they're filled with jargon." It was true, I had to learn to write. And I also learned that you need to talk to someone who's going to be really honest with you, and not just be kind to you.

The hardest thing for me was to write about myself. I thought, Who cares what I'm thinking? I mean, we live in a world of narcissists, and I wanted to make sure that if I was going to communicate what I was thinking or feeling that it had meaning. But I realized that people do want to know what's going on in a doctor's head.

What's next for you, in terms of both medicine and writing?

First, I'm not giving up my day job. I primarily identify myself as a physician and a researcher. I'll continue to write. I have a tremendous luxury, because I only write when I think I have something interesting to write about. I do it as an avocation. If I think of an organizing principle or idea for a third book, I will do that. But I don't have another idea in my hip pocket; I think it takes time. I'd rather do something meaningful and substantial than just manufacture these things.

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Katie Bacon is executive editor of Atlantic Unbound. Her most recent interview was with
Ian Frazier.

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