A Life Worth Living
By Robert Martensen
Farrar, Straus and Giroux, 240 pages
My best friend's grandmother is in the hospital again. Over the past few years, she has been plagued by a myriad of afflictions—chronic internal bleeding, a series of small strokes, heart problems, low blood pressure, and diabetes. Now in her early seventies, she is not terribly old by modern standards. When I had dinner and tossed horseshoes at her house last fall, she was physically active and mentally vibrant, even though the past few years had taken their toll on her.
About a week ago, her body stopped working. Seizures, a septic infection, and low-blood pressure were to blame. She fainted and was rushed to the hospital. In the ICU, she had to be intubated and heavily sedated. Complicating her treatment is the fact that because she spends six months out of every year in Florida, half of her medical treatments have taken place there and half have been in the Midwest. But she's not at her usual hospital. Instead, she's at another hospital nearby with a doctor who isn't familiar with her medical history. She's too sick to be transported the forty minutes to her regular hospital.
My friend's family must face the painful process of how far to push treatments. His grandmother would never have signed a DNR—a Do Not Resuscitate order—and she wants to live as long as she can. But her medical problems are complicated, so complicated it is difficult to disentangle the various factors that are causing her body to stop working. As her attending doctor pointed out, the hospital has a lot of equipment and can run a lot of treatments, but those treatments will not necessarily help. Her body is worn out. Even if they prolong her life—and how long they could indeed hold up is impossible to say—an aggressive regime of treatment will not be easy on the patient or her family. The treatments will also prove costly. Is it futile to treat her when more complications will invariably arise? For my friend's family, the issues are weighty and difficult to sort out, especially when emotionally preparing for the potential loss of a dear family member.
Recently published in paperback, Robert Martensen's book, A Life Worth Living, is meant to help sort out the weighty decisions that accompany coping with serious illness and death in a complex medical establishment. His argument is that the way Americans cope with serious illness and the way they die do not lend themselves to quality of life in illness or dignity in death. He points out that, "One has to struggle to even know how to struggle." Knowing how to struggle is difficult because of the broader culture, the doctors, the medical-industrial system, and also because of the strong notions embedded within us. Underlying the issues of treatment and death are ideological questions of ethics, biology, and policy. If it sounds complex, well, it is.
In the preface, Martensen says that he wrote the book "as a navigational aid for those crossing these treacherous waters themselves or facing questions of how to manage the serious illness of a loved one." Yet, Martensen's book is not a how-to book, a Dying for Dummies. He spent his undergraduate years studying design and writing short stories at Harvard. He went on from there to study medicine at Dartmouth and to spend a number of years practicing emergency medicine before he pursued a PhD in medical history. He currently works at the National Institutes of Health as the director of its Office of Health and Museum. His book exhibits the diversity of his training and interests; he describes it as "part memoir, part philosophy, and part guide." By and large, though, the book revolves not around life, as the title may suggest, but around death. As such, much of the book focuses on the place where most people die—the intensive care unit.
Relatively rare even in the 1960s, ICUs began to proliferate in the 1970s, when American medicine began to embrace new technologies and an aggressive treatment model. Medicine has seen a tremendous increase in its technological capabilities over the last few decades, particularly in diagnostic scanning and imaging. Surgeries which were once inconceivable are now performed on a routine basis. Doctors know more about illness and treatment than ever before. These are not the primary reasons that America's model of treatment has switched. Rather, Martensen says it is a matter of control—the doctor's desire to control illness, and even death, at all costs and the American individual's desire for personal autonomy, particularly in regards to one's health.
As Martensen paints the picture, the wealthy, post-WWII American society began to view life in terms of the ability to have; that is, the accumulation of possessions became the goal for a society whose members had unparalleled wealth. The most valuable possession of all became health. Americans ceased to see themselves as patients and instead saw themselves as "health care consumers." Doctors became "health care providers." Health became the commodity that Americans were most willing to spend extravagantly to attain.
The change in medical care was not just due to patients' mentality. In ages past, when a person was diagnosed with a terminal illness, the doctor's primarily responsibility was to provide an estimate of a timeline for the disease and tell patients what to expect so that they could make preparations for proper medical care and for dying. Martensen writes, "The idea that anyone could control desperate medical conditions has only arisen since World War II." Since the 60s and 70s, the "Achievement of control has taken on the status of a moral and aesthetic imperative." To not be able to control a patient's condition is to fail.
Health, however, resists commodification. Illness resists control. Martensen wants to say, "Maybe we need to rethink our approach to terminal illness and healthcare. Maybe we need to stop treating terminal illness like we can control it." When we aggressively treat terminal illness like we can control it, we in fact relinquish control of our final years to treatment and often die less humanely and more painfully than necessary.
Martensen's primary vehicle for making this point is stories from patients he has known or treated. The book is rife with devastating narratives, and as such, it relies a bit too much on inductive reasoning, a common problem for books dealing with complex problems but written for a general audience. But the stories are powerful, and they achieve their purpose.
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.)
The problem, as Martensen sees it, is that ICUs dehumanize patients on their deathbed. The design of an ICU is modeled after Jeremy Bentham's panopticon (a prison in which all inmates could be observed at the same time from one central cylinder.) In the ICU, patient rooms are clustered around a central nursing station allowing nurses and doctors to monitor all patients simultaneously in order to maximize efficiency in treatment.
The panopticon design is not conducive to comfort, however, and patients in the ICU often lose their sense of time and reality. That is to say, ICUs are not pleasant places to die. Who would want to spend their final waking moments in the sterility of a hospital, white floors and ceilings, surrounded by an army of machines and unknown nurses? Why, then, is it that that is how so many people spend the last days of their lives?
The hospice is concerned with palliative care—relieving the pain while not treating the cause of the problem. A person nearing the end of a bout with terminal illness may seek out hospice. Though hospice wards exist, much of hospice care is home-based. With hospice, a person can die in the comfort and familiarity of their own home. Hospice has been around since the Middle Ages and is increasing in popularity, but it is still far from a majority practice. Martensen quotes a fellow physician who, after being diagnosed with terminal cancer in his forties, decided to move from the emergency room to hospice care:
"I'm working in hospice because I've seen all too many dying people come to it at the very end. Right now only about 15% of dying Americans ever get hospice care, and a third of those start in the last week of their lives. In the meantime, what do they think they are doing—getting cured?"
Hospice care, like many of the choices of coping with terminal illness, is not so much a matter of personal choice and autonomy as it is of geography. For instance, if you suffer from an illness and live in Boston, you are far more likely to be hospitalized than if you suffer from the same illness and live in New Haven, Connecticut—about sixty percent more likely. (This does not hold true for necessary surgeries.) The reason is not quality of care. Both cities are home to world-class treatment facilities. The difference is the number of hospital beds available. Boston has far more hospital beds available, and as the researcher Milton Roemer discovered in the 1960s, once built, hospital beds will be filled.
Patients do not have the individual choice in treatment that they might think they have. Medical culture varies from city to city and region to region. In part, this is a matter of what's available. South Florida is saturated with medical specialists to care for the wealthy population, abounding with retirement communities. Patients rarely see a primary care physician, instead opting for specialists. Compare this to a rural part of Alabama, which has far more primary care physicians. Interestingly, outcomes for areas with a large number of specialists are not better than those populations that are served mainly by primary care physicians.
Medicine has also succumbed to big business, and giant corporations often own hospitals that may have once been non-profit entities. As such, they are out to make money and are in competition with other area hospitals. Hospitals want people to occupy their beds—they make money off of it. Doctors are incentivized for pursuing aggressive care for patients, terminally ill or not. In the American culture of rampant lawsuits, doctors want to cover their backs. Should they deem treatment "futile"—a slippery concept in medicine—or refuse to perform a treatment due to associated risks, they open themselves up for lawsuits. Doctors are also positively incentivized: medical compensation is based on procedures. In private practice, the more procedures a doctor performs, the better he is compensated. In some cases, this can lead to abuse of the system.
Such is the case in McAllen, Texas, which Atul Gawande wrote about in a recent edition of the New Yorker. Gawande found that McAllen, apart from Miami, spends more than any other city on healthcare—$15,000 per person per year. The average person here makes $12,000 per year. The reason is that the medical culture in McAllen encourages often unnecessary tests. Regardless of your malady, if you live in McAllen chances are that you will receive a much more costly and aggressive treatment than if you lived in Rochester, Minnesota and were being treated at the Mayo Clinic (far below the average on costs). The results of your treatment would probably not be better in McAllen. Actually, the outcomes would probably be the same or worse. Ultimately, some of Martensen's concerns with treating terminal illness may become irrelevant because of issues of cost. Two weeks ago, I sat down for a beer with the doctor whom I called when my father was dying. Dr. John Koehler is an ER doctor by training who now owns a dozen or so immediate care clinics in the Chicago area. He's a fervent pragmatist whose rationality is only tempered by his strong evangelical religious convictions. I thought he might be able to answer some of the questions that Martensen leaves unanswered about the value of life in the face of terminal illness.
What would he do in his own situation, say thirty years from now, if he were diagnosed with terminal illness? Would he pursue aggressive treatment to extend his life, even if it meant a reduced quality of life? Would he allow himself to be put on life-support? He surprised me with his answer: "It won't matter what I want to do. The system is about to break. It's unsustainable. Care will eventually be rationed by the government or by insurance companies. We can't afford what we're doing now. In the future if you have a stage IV solid tumor, you won't be given the option of treatment.” I couldn't tell whether this bothered him or not.
In the United States, about one out of every six dollars earned goes towards health care. President Obama recently said that the "biggest threat to our nation's balance sheet is the skyrocketing cost of health care." The costs of medical care are staggering; approximately thirty percent of Medicare money is spent by patients in their final year of life. A terminally ill ICU patient has an average length of stay of almost thirteen days at a cost of $24,541, and non-ICU hospitalization of the terminally ill has an average stay of almost nine days at a cost of $8,548. The baby-boomers start to become eligible for Medicare in 2011; over the next ten to twenty years, the Medicare costs associated with the last year of life will increase dramatically. An over-extended system won't be able to handle the increased load. Health-care rationing for the terminally ill already exists in Europe. The poor of the United States already face some level of it. As Dr. Koehler sees it, it's not a question of if but when this rationing arrives for the rest of the population of the United States.
Martensen spends the first half of his book seriously questioning the aggressive treatment of terminal illness. If not read carefully, the book lends itself to the argument that if a person's quality of life is poor as the result of terminal illness, that life may not be worth living, or at least, that disease might not be worth treating. But Martensen takes more of an anthropological perspective, which becomes clear as the book progresses. Martensen's arguments are not based on a patient's quality of life, but on the patient's “unity of being”: "And should not recovery of the self, to the degree that the underlying disease permits, be the overall purpose for undergoing and delivering intense medical interventions?" Martensen is concerned with the question: "What does it mean to be human?"
This is a question that physicians have had to face in new ways in the last half century as new technologies have enabled physicians to keep patients alive when not possible. Physicians coined the phrase persistent vegetative state (PSV) to describe an extended state of being in which a patient is still alive though not responsive to stimuli. (Perhaps the most famous case of PSV was Terri Schiavo.) The patient may breathe, grow, and excrete waste, but their cerebral cortex, the part of the brain that defines one’s identity, is unresponsive. The longer a person remains in such a state, the less likely his or her brain will regain the ability to fully function. Though current law states that someone is not legally dead until all electrical impulses in the brain cease, there is a current push among physicians (and hospitals eager to profit off of the harvesting of patients' organs) to change the law to accommodate the cessation of life support in cases where the cerebral cortex is inactive. A functional cerebral cortex then, at least according to some doctors, is what makes someone human. Someone breathing but not thinking is only a shell of a human.
Martensen resists answering the question that his book hinges upon: "We—doctors and patients alike—confuse ourselves if we assume that biomedicine (and the corporate interests that increasingly shape its imagination) can and should tell us the purpose and meaning of our lives." In fact, the tendency to locate one's physiological being within the cerebral cortex is peculiar to the modern west. Other cultures and traditions tend to locate life with the soul and therefore the beating heart. Medicine and biology can speak to aspects of what it means to be human but certainly cannot claim a monopoly on the truth. As Martensen aptly states, the "existential terrain" of the meaning of life, "belongs to notions of wholeness, integrity, and being, ancient concepts that encompass both a sense of surrender to the fact of our own existence and unsentimental embrace of that existence."
Ultimately, Martensen wants to encourage a surrender to the fact of our own existence, our humanity—part of which includes death. Sadly when we do face death, be it our own or the death of a loved one, most of us will be ill-prepared, forced to confront not only the grief but also a difficult decision making process. Trying to navigate the medical-industrial system and the many choices it presents is the nightmarish version of the old Choose-Your-Own Adventure stories, though almost every choice leads to the same tragic end. Martensen's book is useful in providing an overview of the terrain so that one can know what to expect in facing terminal illness. We cannot always control when we die, but to some extent, we can control how we die. But this much is clear: as hard as it is to retain one's humanity in life, it may be much harder when facing death.