The book opens with the story of Marguerite, a vibrant, athletic woman in her early forties and the sister of one of Martensen's friends from undergrad. She and her husband were the beneficiaries of trust funds and did not have to work, so with the many kids they had together, they set about to use serve others, working in other countries for CARE and Oxfam. Not long after she moved back to Boston she asked Martensen, then working as an ER doctor at one of Harvard's teaching hospitals, to examine an inflamed patch of rough skin on her left breast.

Martensen rightly suspected the worst and referred her to an oncologist, who diagnosed her with inflammatory breast cancer. A team of doctors recommended an aggressive approach, and Marguerite readily accepted. She underwent a mastectomy followed by radiation for her regional lymph nodes and at least three rounds of chemotherapy. She fared well for the next several months, but the cancer spread. Doctors encouraged her to enroll in experimental chemotherapy treatments.

Like Marguerite, many patients with terminal cancer are often enrolled in experimental treatments. With the label of "experimental," or "trial" often comes a false hope, almost as if the patient is getting cutting-edge treatment, treatment that other patients might be lucky to get in a few years. However, physicians are often somewhat elusive when detailing what the implications of these treatments are. In fact, when a chemotherapy drug combination first enters the testing, the first trials are merely to determine a toxicity profile—how much medicine can be administered without poisoning the patient. The next phase of drug trials determines whether or not tumors shrink in at least twenty percent of the population. Tumor shrinkage bears little or no relation to overall survival. Phase III trials compare the effectiveness of experimental chemotherapy to more established forms. Most patients are not told this. Instead, they are expected to learn it from the fine print in the consent forms they sign. Experimental trials for chemotherapy agents are necessary for the testing and introduction of new forms of chemotherapy treatments. American medicine is far more aggressive, especially when it comes to cancers. The results are not necessarily better.

Marguerite experienced all three phases of experimental chemotherapy, but none of them worked. The doctor's last effort was to perform a bone marrow transplant in combination with high-dose chemotherapy. In order to kill the cancer, the chemotherapy is supposed to kill all rapidly dividing cells, including the bone marrow, which is then replaced with the bone marrow transplant. It is an extremely aggressive treatment. When Martensen last saw Marguerite, it was in the ER where he was working. Just two months after finishing the combination treatment, she came into the ER with internal bleeding that would not stop. After arguing with the head resident, who didn’t want to admit a dying patient, Martensen had her admitted to the ICU. As she lay in the hospital dying, her husband wondered why they had gone through with the final round of treatment:

    "Even before we started the last chemo, before the bone marrow transplant-chemo thing...we knew the cancer had spread to her lungs and liver and brain. Now she knows she is at the end...I guess the doctors tried their best, though it's been so rough. Had we only known...Maybe they tried to tell us, but we didn't pay attention."

It's impossible to say how forthcoming her doctors were about her condition—Martensen doesn't say. It's also impossible to say how long aggressive treatments extended her life. It does seem likely though that, had Marguerite opted out of the later treatments, she would have been able to spend a good portion of the last months of her life free of the painful side-effects of chemotherapy and able to live out her last days in hospice.

Marguerite was in the prime of her life, physically fit and completely capable of making her own decisions. More complicated than treating adults suffering with terminal illness is the treatment of terminally ill children. Martensen narrates one particularly painful incidence that he witnessed while working as a doctor on the Gulf Coast. A seven-year-old girl, whom Martensen calls Britney, was diagnosed with cancer in her genitals. By the time it was diagnosed—the parents, not suspecting the cramps the girl experienced were anything serious had waited several months before seeing a doctor—it had metastasized. The doctors initially treating Britney knew the cancer was terminal; however they said nothing of that to the mother, who was an evangelical Christian and firmly believed that God would heal her daughter. To prolong her life the doctors performed a series of "temporizing measures," amputating her legs, hips, and eventually her lower pelvis over the course of almost three years. Several doctors, including Martensen, tried to halt the procedures, but the mother, insistent that her daughter should be treated at all costs, would take her daughter home and then eventually take her to another ER at another hospital to receive treatment. Inevitably the girl died, though Martensen doesn’t know where or in what condition she spent her final days. How the girl herself felt about her treatments is difficult to say—she was never alone and nodded along to whatever her domineering mother said.

The aggressive treatment of elderly patients faces its own set of problems. Most treatments are tested on adult populations in mid-life. Elderly populations, though, may react differently to different types of treatments. Further, their bodies often do not cope as well with treatments as do those of their younger counterparts. Martensen tells the story of a friend's mother who underwent surgery to replace a faulty mitral valve in her heart that was limiting her mobility and prevented her from taking the walks on the beach, which she loved. The surgery was a success, but within a few months, her memory began to fail her, and she started to become senile. During the surgery she had been put on a cardiac bypass pump; a significant percentage of elderly adults who are put on such pumps during longer heart surgeries experience significant memory loss. Was the surgery worth it? Even with her healthy heart, she couldn't take walks anymore because she couldn't find her way back to her house.

Despite the myriad of choices and resources now available to patients, Martensen thinks that we might not be better off than our forbearers. He cites the research of Arthur Imhof, a Swiss demographer. Imhof found that in Berlin in 1600, the average person who reached eighty could be expected to live until the age of eighty-six. In 1980, the average Berliner who reached eighty could only be expected to live until the age of eight-eight—400 years of medical progress resulted in only two more years of life. The 17 century octogenarian probably died relatively quickly of an infection at eighty-six. The modern counterpart probably spent two years in and out of hospitals receiving care to treat a terminal illness. In some cases, aggressive late-life treatments can actually shorten a patient's life. This was the case of my father.

Though my father was in his late seventies, he continued to work until he was diagnosed, three and a half weeks before he died. Death was in the future—six months to a year, his physician said. Unlike many of the doctors in the stories that Martensen narrates, the doctors were frank. Beating the cancer, stage IV by that point, was not an option. Chemotherapy would only function to extend the length of his life. Unfortunately, it did the reverse, compromising his immune system. He entered the hospital with a case of pneumonia, which led to organ failure.

Because we thought his death was in the distant future, we hadn't spoken much about what should happen should he become unconscious. The night before he died, as he passed in an out of consciousness, I phoned a close friend's father, a doctor. After I recited my father's condition, I asked whether or not to put him on life support. He advised me not to; it would only extend the inevitable in a painful manner. I was fortunate to be able to wake up family friends in the middle of the night to ask for advice. Most facing death are not privy to outside consultations, especially at odd hours of the night.

What my father should have done, what I would have encouraged him to do in retrospect, was to forgo chemotherapy and try to live out the last year of his life in relative comfort and freedom. When he neared death and his condition necessitated it, my family would have arranged for hospice care.

The difference between hospice and an ICU lies in the goals of the approaches. As the name may suggests, intensive care units were initially conceived of as a place for vigorous care so that people could recover and resume their life as normal. However, ICUs no longer function as pit stops for intense treatments. Increasingly, they are where people go to die. In 2004, a University of Pittsburgh medical journal published research that suggested about forty percent of terminally ill people die in hospitals. Twenty percent of the terminally ill die in an intensive care unit, many of them after spending weeks, even months there. (This despite the fact that the overwhelming majority of Americans would rather die at home.)

Comments

A thought-provoking article, raising many issues that we in the biomedical research field consider often, if not daily.

A few comments:

1. My hope is that Martensen's readers are not left with a feeling that most (or all) doctors are only out to protect themselves from litigation and increase their profit margins. That would create unnecessary distrust of those in the medical field and do a disservice to the really excellent physicians, nurses, etc. who work diligently to alleviate patient suffering.

2. My experience with informed consent in the case of experimental cancer therapy is that patients are given everything they need to decide the best course of action for themselves, and I would be surprised to find that Martensen's experience is dramatically different. It is also true that Phase I trials are usually (though not always) done with healthy volunteers, not patients, and that experimental drugs have properties that researchers have verified and believe will work to combat illness for sound biological reasons. Experimental clinical trials, then, are a risk, but a calculated and not an altogether foolhardy one.

3. It sounds as if some physicians are pushing for rewriting the law to say that a functional cerebral cortex is what makes someone a living human, not that it defines their humanity. The ancients may have believed that the soul resided in the heart, and today's naturalists may believe we have no soul at all, but neither of those points is relevant to the question of whether someone is alive or not from a biological perspective (which is what the law speaks to). The better argument for life is perhaps the fact that people do sometimes regain cerebral function and wake up. Unless proponents of such a law would like to argue in favor of resurrection (which, of course, we also believe in, in certain circumstances), they would have to admit that a "brain dead" person is still in fact biologically alive.

We are all mortal, yet fear our mortality. Despite medical advances, I believe that those very human characteristics will remain with us for the time being. Thank you again for your thoughtful article.

Rachel Rienstra
Candidate for PhD, Biological Sciences
Harvard University

Rachel,

Thanks for your thoughtful comments. I'll try to address them:

1) Martensen talks more of doctors trying to protect themselves from litigation (a legitimate concern in the United States) than he does with doctors trying to earn excess compensation. He does focus a fair amount on hospitals trying to earn money—not by over-treating patients but by limiting treatment to patients when it should be administered. He cites several instances when he was pressured by the organ donation specialist at a particular hospital to talk to the families about cutting off life support. Of course, hospitals make a good deal of money off of organ donation, which is why, when this particular hospital's profits had started to slip, management had recruited someone to increase organ donation.

Atul Gawande's New Yorker piece speaks more to the issue of doctors' compensation—and though he doesn't say that the majority of doctors are over-treating to boost their profit margin, he does seem to indicate that a few bad doctors in a town can change the culture, as was the case in McAllen, Texas.

2) Martensen is an ER doctor, so he has probably never, perhaps with the exception of his clinical rotations, administered chemotherapy. What he does say is that doctors often rely on patients to leaf through the voluminous consent forms because no one really wants to talk about the potential (and often likely) negative outcomes. As for the experimental chemotherapy, I can't claim expertise, but I do know that Marguerite, Martensen's old roomate's sister, underwent all three stages of experimental chemotherapy.

3) "a functional cerebral cortex is what makes someone a living human, not that it defines their humanity"—that's a good distinction to make. Thank you. PSV is a complicated diagnosis, one that is not made readily and also one that seems to be somewhat inexact. I almost certainly treated it to coarsely. To be fair to Martensen, he spends considerable time talking about PSV (a chapter), and he narrates an instance when one patient in fact did make a full recovery after several months.

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