When we let technology take over medicine, we turn a physician into a technician, and a patient into an object—a body that succeeds or disappoints, depending on whether it responds to treatment.
"Gawande notes that when we debate end-of-life care in our society, we wind up focusing on the money, and ignore the issues that cut much further into our national culture and psyche: “The subject seems to reach national awareness mainly as a question of who should ‘win’ when the expensive decisions are made: the insurers and the taxpayers footing the bill or the patient battling for his or her life. Budget hawks urge us to face the fact that we can’t afford everything. Demagogues shout about rationing and death panels. Market purists blame the existence of insurance: if patients and families paid the bills themselves, those expensive therapies would all come down in price. But,” Gawande argues, “they’re debating the wrong question. The failure of our system of medical care for people facing the end of their life runs much deeper. To see this, you have to get close enough to grapple with the way decisions about care are actually made"
I would like to quote a wonderful article in healthbeatblog.com by Maggie Mahar, which highlights the skills needed for end-of-life care. I hope you will find it as thought provoking as I do and seek Atul Gawande's book for further reflection and inspiration.
Atul Gawande: “Letting Go: What Should Medicine Do When It Can’t Save Your Life?”
Summary: In the August 2 issue of the New Yorker, Boston surgeon Atul Gawande writes about the ambiguities that plague end-of-life care. With the candor that makes his writing both so credible and so moving, he acknowledges that, as a physician, he too has great difficulty “letting go” of a dying patient.
Ultimately, Gawande suggests, the problem with the way we deal with death today is that we have forgotten the art of dying. Palliative and hospice care can help us recover a lost art, he adds, though not quite in the way most of us expect. The goal is not to cut costs and curtail suffering by shortening the process of dying. In fact research shows that those who receive hospice or palliative care often live longer than other patients.
The aim of hospice and palliative care is to help patients “have the fullest possible lives,” during their final weeks or months, Gawande explains. “That means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.”
As it turns out, improving the quality of life for patients suffering from a fatal disease does, in fact, reduce the cost of dying. Patients are less like to return to an ER in the middle of the night, or wind up in an ICU. But saving money is not the goal of palliative care, it is simply a welcome by-product that, by now, HealthBeat readers should expect. Once again, higher quality care translates into more affordable care. First, aim for better care. The savings will come.
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Gawande begins “Letting Go” with the story of Sara Thomas Monopoli, 39 weeks pregnant with her first child “when her doctors learned that she was going to die. It started with a cough and a pain in her back. Then a chest X-ray showed that her left lung had collapsed, and her chest was filled with fluid. A sample of the fluid was drawn off with a long needle and sent for testing. Instead of an infection, as everyone had expected, it was lung cancer, and it had already spread to the lining of her chest.” She and her husband Rich were bewildered by the diagnosis. “She had never smoked, or lived with anyone who had. She exercised. She ate well.”
The doctors induced labor, and Sara and Rich decided that, for one day, they would enjoy the birth of their first child. “’Sara and I looked at each other,’ Rich recalled, ‘and we said, “We don’t have cancer on Tuesday. It’s a cancer-free day. We’re having a baby. It’s exciting. And we’re going to enjoy our baby.’” On Tuesday, at 8:55 P.M. , Vivian Monopoli, seven pounds nine ounces, was born. She had wavy brown hair, like her mom, and she was perfectly healthy.”
On Wednesday, they would confront Sara’s cancer—or not.
What Our Culture Teaches Us
Sara’s oncologist, Dr. Paul Marcoux, told her that the cancer was inoperable. But there were chemotherapy options, “notably a relatively new drug called Tarceva, which targets a gene mutation commonly found in lung cancers of female non-smokers. Eighty-five per cent respond to this drug,” and, Gawande reports, “her oncologist couldn’t help but add, ‘some of these responses can be long-term.’” How could he not tell her that? She had a right to know.
Still, “Words like ‘respond’ and ‘long-term’ provide a reassuring gloss on a dire reality,” Gawande writes. “There is no cure for lung cancer at this stage. Even with chemotherapy, the median survival is about a year. But it seemed harsh and pointless to confront Sara and Rich with this now. Vivian was in a bassinet by the bed. They were working hard to be optimistic. As Sara and Rich later told the social worker who was sent to see them, they did not want to focus on survival statistics. They wanted to focus on ‘aggressively managing’ this diagnosis.” Unfortunately, as Gawande later notes, most patients and families think that “long-term” means ten years—not one year.
“Sara understood that her disease was incurable,” Gawande adds. “The week after she was given the diagnosis and delivered her baby, she spelled out her wishes for Vivian’s upbringing after she was gone. She had told her family on several occasions that she did not want to die in the hospital. She wanted to spend her final moments peacefully at home. But the prospect that those moments might be coming soon, that there might be no way to slow the disease, ‘was not something she or I wanted to discuss,’ her mother said.” It is one thing to know that you are battling a disease that, ultimately, will win. It is something else to recognize that death is imminent.
Sara’s father, Gary, and her twin sister, Emily, “still held out hope for a cure,” Gawande notes. “The doctors simply weren’t looking hard enough, they felt. ‘I just couldn’t believe there wasn’t something,’ Gary said.”
This is an American way of denying death that we have been taught, by our culture, our media, and the medical profession itself: If you don’t give up, if you fight, if you search hard enough, if the doctor is good enough, if the hospital is the best, if you are willing to spend enough —there is always something to be done. An insurance company who says that the treatment won’t do any good is simply trying to save money.
Why Physicians Deny Death
Gawande acknowledges that physicians also have difficulty navigating those dark “shoals,” where we all founder, that shallow water where even big ships like our health care system can’t anchor, and the dying can’t catch their breath: “At least two things get in the way. First, our own views may be unrealistic. A study led by the Harvard researcher Nicholas Christakis asked the doctors of almost five hundred terminally ill patients to estimate how long they thought their patient would survive, and then followed the patients. Sixty-three per cent of doctors overestimated survival time. Just seventeen per cent underestimated it. The average estimate was five hundred and thirty per cent too high. And, the better the doctors knew their patients, the more likely they were to err.“Second, we often avoid voicing even these sentiments. Studies find that although doctors usually tell patients when a cancer is not curable, most are reluctant to give a specific prognosis, even when pressed,” he reports. “More than forty per cent of oncologists report offering treatments that they believe are unlikely to work. In an era in which the relationship between patient and doctor is increasingly miscast in retail terms—‘the customer is always right’—doctors are especially hesitant to trample on a patient’s expectations. You worry far more about being overly pessimistic than you do about being overly optimistic. And talking about dying is enormously fraught. When you have a patient like Sara Monopoli, the last thing you want to do is grapple with the truth. I know, because Marcoux [her oncologist] wasn’t the only one avoiding that conversation with her. I was, too.”
Gawande explains: “Earlier that summer a PET scan had revealed that, in addition to her lung cancer, she also had thyroid cancer, which had spread to the lymph nodes of her neck, and I was called in to decide whether to operate. This second, unrelated cancer was in fact operable. But thyroid cancers take years to become lethal. Her lung cancer would almost certainly end her life long before her thyroid cancer caused any trouble. Given the extent of the surgery that would have been required, and the potential complications, the best course was to do nothing. But explaining my reasoning to Sara meant confronting the mortality of her lung cancer, something that I felt ill prepared to do. . . .”
“Sitting in my clinic, Sara did not seem discouraged by the discovery of this second cancer,” Gawande recalls. “She seemed determined. She’d read about the good outcomes from thyroid-cancer treatment. So she was geared up, eager to discuss when to operate. And I found myself swept along by her optimism. Suppose I was wrong, I wondered, and she proved to be that miracle patient who survived metastatic lung cancer?
“My solution was to avoid the subject altogether. I told Sara that the thyroid cancer was slow-growing and treatable. The priority was her lung cancer, I said. Let’s not hold up the treatment for that. We could monitor the thyroid cancer and plan surgery in a few months.”
Meanwhile, Sara had undergone three rounds of chemotherapy with limited, if any, effect. At that point “Perhaps her oncologist could have discussed what she most wanted as death neared and how best to achieve those wishes,” Gawande observes. “But the signal he got from Sara and her family was that they wished to talk only about the next treatment options. They did not want to talk about dying.”
A doctor cannot force people to talk about death. If a physician tries, the family is likely to label him “not up to snuff,” fire him, and find a new physician. This does the patient no good. So when Marcoux met with Sara and her family, “he took the measure of the room,” Gawande says. “With almost two decades of experience treating lung cancer, he had been through many of these conversations.”
“’I know that the vast majority of my patients are going to die of their disease,’” Marcoux later told Gawande. “The data show that, after failure of second-line chemotherapy, lung-cancer patients rarely get any added survival time from further treatments and often suffer significant side effects.’ But,” Gawande notes, “he, too, has his hopes.” He could not be sure that a new, experimental therapy would not help Sara.
Marcoux told the family that, “at some point, ‘supportive care’ was an option for them to think about. But, he went on, there were also experimental therapies. He told them about several that were under trial. The most promising was a Pfizer drug that targeted one of the mutations found in her cancer’s cells. Sara and her family instantly pinned their hopes on it. The drug was so new that it didn’t even have a name, just a number—PF0231006—and this made it all the more enticing.
“There were a few hovering issues . . .” Gawande writes. “The critical problem was that the rules of the trial excluded Sara because of the pulmonary embolism she had developed that summer. To enroll, she would need to wait two months, in order to get far enough past the episode. In the meantime, [her oncologist] suggested trying another conventional chemotherapy .
“It’s worth pausing to consider what had just happened,” Gawande adds. “Step by step, Sara ended up on a fourth round of chemotherapy, one with a minuscule likelihood of altering the course of her disease and a great likelihood of causing debilitating side effects. An opportunity to prepare for the inevitable was forgone. And it all happened because of an assuredly normal circumstance: a patient and family unready to confront the reality of her disease.”
Gawande asked Marcoux “what he hope[d]to accomplish for terminal lung-cancer patients when they first come to see him.” Marcoux’ reply: “I’m thinking, ‘Can I get them a pretty good year or two out of this?’ Those are my expectations. For me, the long tail for a patient like her is three to four years.’” For a young mother like Sara, the difference between two years and four years would be enormous. Four years would give her the opportunity to get to know her daughter as a person, and to leave her with the firm memory of a mother who loved her. Little wonder that Sara was eager to try anything.
Moreover, when a doctor talks to a patient and her family about “more time,” they realize that he or she doesn’t really know what the outer limit of “more “ might mean in an individual case. “’They’re thinking ten to twenty years,’ Marcoux confided. "You hear that time and time again. And I’d be the same way if I were in their shoes.”
Meanwhile, Sara grew sicker. “A CT scan in December showed that the lung cancer was spreading through her spine, liver, and lungs. When we met in January, she could move only slowly and uncomfortably,” Gawande remembers. “Her lower body had become swollen. . . . “And still,” he reports, “Sara, her family, and her medical team remained in battle mode. On February 12th, she completed five days of radiation treatment, which left her immeasurably fatigued, barely able get out of bed. She ate almost nothing. She weighed twenty-five pounds less than she had in the fall. She confessed to Rich that, for the past two months, she had experienced double vision and was unable to feel her hands.
“‘Why didn’t you tell anyone?’ he asked her.
“I just didn’t want to stop treatment,’ she said. ‘They would make me stop’”
“Her chances were rapidly dwindling,” Gawande admits. “But who was to say they were zero?
“The Median Is Not the Message” But “Hope Is Not a Plan”
When he thinks about his terminally ill patients, Gawande tell us that he cannot help but recall an extraordinary essay entitled “The Median is Not the Message,” written by the paleontologist and writer Stephen Jay Gould in 1985 “after he had been given a diagnosis . . . of abdominal mesothelioma, a rare and lethal cancer usually associated with asbestos exposure. He went to a medical library when he got the diagnosis and pulled out the latest scientific articles on the disease. ‘The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median survival of only eight months after discovery,’ Gould wrote. The news was devastating. But then he began looking at the graphs of the patient-survival curves.“Gould was a naturalist, and more inclined to notice the variation around the curve’s middle point than the middle point itself,” Gawande points out. “What the naturalist saw was remarkable variation. The patients were not clustered around the median survival but, instead, fanned out in both directions. Moreover, the curve was skewed to the right, with a long tail, however slender, of patients who lived many years longer than the eight-month median. This is where he found solace.
“He could imagine himself surviving far out in that long tail. And he did. Following surgery and experimental chemotherapy, he lived twenty more years before dying, in 2002, at the age of sixty, from a lung cancer that was unrelated to his original disease.”
In his 1985 essay, Gould wrote: “‘It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die—and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light.”
Gawande confesses: “I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”
For Sara, Gawande tells us, “there would be no miraculous recovery, and, when the end approached, neither she nor her family was prepared.”
She had wanted to die, peacefully, at home. Instead, one morning “three days before she was to start her new round of chemo, Rich awoke to find his wife sitting upright beside him, pitched forward on her arms, eyes wide, struggling for air. She was gray, breathing fast, her body heaving with each open-mouthed gasp. She looked as if she were drowning. He tried turning up the oxygen in her nasal tubing, but she got no better.
“’I can’t do this,’ she said, pausing between each word. ‘I’m scared’”
“He had no emergency kit in the refrigerator. No hospice nurse to call,” Gawande writes. “He called 911, . . .A few minutes later, firemen swarmed up the stairs to her bedroom, sirens wailing outside.”
In the hospital, Gawande explains, her primary care physician intervened, and finally Sara’s family “let him call the palliative-care team to visit. The team prescribed a small dose of morphine, which immediately eased her breathing. Her family saw how much her suffering diminished, and suddenly they didn’t want any more suffering. The next morning, they were the ones to hold back the medical team.
“‘They wanted to put a catheter in her, do this other stuff to her,’ her mother, Dawn, told Gawande . ‘I said, “No. You aren’t going to do anything to her. . . ”’
“In the previous three months, almost nothing we’d done to Sara—none of our chemotherapy and scans and tests and radiation—had likely achieved anything except to make her worse,” Gawande admits. “She may well have lived longer without any of it. At least she was spared at the very end.
“That day, Sara fell into unconsciousness as her body continued to fail. Through the next night, Rich recalled, ‘there was this awful groaning. “Whether it was with inhaling or exhaling, I don’t remember, but it was horrible, horrible, horrible to listen to. . .’. At the end, Rich knelt by her bed, weeping, and whispered in her ear “It’s okay to let go.” Eventually she did. But this was not how she had wanted to die.
Who Should ‘Win’ the Patient or the Payor? “We’re “Debating the Wrong Question”
What could Sara’s doctors have done differently “Or, to put it another way,” Gawande asks, “if you were the one who had metastatic cancer—or, for that matter, a similarly advanced case of emphysema or congestive heart failure—what would you want your doctors to do?
“The issue has become pressing, in recent years,” he continues, “for reasons of expense. . . . Twenty-five per cent of all Medicare spending is for the five per cent of patients who are in their final year of life . . . Spending on a disease like cancer tends to follow a particular pattern. There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off. Medical spending for a breast-cancer survivor, for instance, averaged an estimated fifty-four thousand dollars in 2003, the vast majority of it for the initial diagnostic testing, surgery, and, where necessary, radiation and chemotherapy.” Many of these patients live; those health care dollars are not wasted. But “for a patient with a fatal version of the disease,” Gawande explains, “the cost curve is U-shaped, rising again toward the end—to an average of sixty-three thousand dollars during the last six months of life with an incurable breast cancer. . . . ultimately, death comes, and no one is good at knowing when to stop.” Arguably those dollars are squandered. Yet when the spending begins, no one knows which patients will survive. And even when the outlays begins to rise on the other side of the “U,” it’s not clear when to stop. Maybe this is just a set-back; maybe the situation will turn around . . .
Gawande notes that when we debate end-of-life care in our society, we wind up focusing on the money, and ignore the issues that cut much further into our national culture and psyche: “The subject seems to reach national awareness mainly as a question of who should ‘win’ when the expensive decisions are made: the insurers and the taxpayers footing the bill or the patient battling for his or her life. Budget hawks urge us to face the fact that we can’t afford everything. Demagogues shout about rationing and death panels. Market purists blame the existence of insurance: if patients and families paid the bills themselves, those expensive therapies would all come down in price. But,” Gawande argues, “they’re debating the wrong question. The failure of our system of medical care for people facing the end of their life runs much deeper. To see this, you have to get close enough to grapple with the way decisions about care are actually made.
“These days, swift catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition—advanced cancer, progressive organ failure (usually the heart, kidney, or liver), or the multiple debilities of very old age. In all such cases, death is certain, but the timing isn’t,” he notes. “So everyone struggles with this uncertainty—with how, and when, to accept that the battle is lost. As for last words, they hardly seem to exist anymore. Technology sustains our organs until we are well past the point of awareness and coherence. Besides, how do you attend to the thoughts and concerns of the dying when medicine has made it almost impossible to be sure who the dying even are? Is someone with terminal cancer, dementia, incurable congestive heart failure dying, exactly?
“This is a modern tragedy,” he continues, “ replayed millions of times over. When there is no way of knowing exactly how long our skeins will run—and when we imagine ourselves to have much more time than we do—our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?”
Hospice and Palliative Care – Finding A Way Out
Some of us wonder if for-profit insurance companies ever “add value” to our health care system. Gawande reminds us that there are exceptions to all of our generalizations when he offers an example of an insurer who has, in one instance, expanded our understanding of how to create a more compassionate, more patient-centered, more affordable system.
“In late 2004, executives at Aetna . . . started an experiment.” Normally, a patient is not eligible for hospice until he is willing to forego all treatment. This is why most patients don’t enroll in hospice until the very end. But “Aetna decided to let a group of policyholders with a life expectancy of less than a year receive hospice services without forgoing other treatments. A patient like Sara Monopoli could continue to try chemotherapy and radiation, and go to the hospital when she wished—but also have a hospice team at home focusing on what she needed for the best possible life now."
A two-year study of this “concurrent care” program found that enrolled patients were much more likely to use hospice," Gawande reports. "The figure leaped from twenty-six per cent to seventy per cent. That was no surprise, since they weren’t forced to give up anything. The surprising result was that they did give up things. They visited the emergency room almost half as often as the control patients did. Their use of hospitals and I.C.U.s dropped by more than two-thirds. Over-all costs fell by almost a quarter.
(It's worth noting, as Gawande did in an online interview responding to questions about this article, that while Aetna has not expanded this experiment to its customers, the new healthcare legislation includes a Medicare pilot project that would let 12 communities across the country test this approach of not requiring terminal patients to sign away their ability to recive curative treatment (however unlikely to be succesful) in order to get hospice services. If the pilot is succesful, Medicare could roll it out nationwide, without needing approval from Congress.)
The results of Aetna's experiment were "stunning, and puzzling," says Gawande, "it wasn’t obvious what made the approach work." Aetna then decided to see if palliative care would have a similar effect, running a “more modest concurrent-care program for a broader group of terminally ill patients. For these patients,” Gawande points out, “the traditional hospice rules applied—in order to qualify for home hospice, they had to give up attempts at curative treatment. But, either way, they received phone calls from palliative-care nurses who offered to check in regularly and help them find services for anything from pain control to making out a living will. For these patients, too, hospice enrollment jumped to seventy per cent, and their use of hospital services dropped sharply. Among elderly patients, use of intensive-care units fell by more than eighty-five per cent. Satisfaction scores went way up. What was going on here? The program’s leaders had the impression that they had simply given patients someone experienced and knowledgeable to talk to about their daily needs. And somehow that was enough—just talking.
“The explanation strains credibility,” Gawande acknowledges, “but evidence for it has grown in recent years. Two-thirds of the terminal-cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death. But the third who did were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive-care unit. Two-thirds enrolled in hospice. These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression." In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation.
Here, it is crucial to understand that the goal of Hospice is not to speed the process of dying—or to save money. The difference between hospice and other care,” Gawande explains is a matter of “priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.
“Like many people,” Gawande writes, “I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer.”
My guess is that with supportive hospice therapy, patient are no longer flailing about, they are no longer wrestling with the Angel of Death. They save their strength for a good death.
When Atul Gawande Cannot Find the Right Words
Gawande ends his story with great humility, describing the scene, last winter, when he tried to tell a patient suffering from colon cancer that she was dying. After surgery, he met with her and explained that her cancer “had spread not only to her ovaries but also to her lymph nodes. I said that it had not been possible to remove all the disease. But I found myself almost immediately minimizing what I’d said. ‘We’ll bring in an oncologist,’ I hastened to add. ‘Chemotherapy can be very effective in these situations.’
“She absorbed the news in silence, looking down at the blankets drawn over her mutinous body. Then she looked up at me. ‘Am I going to die?’
“I flinched. ‘No, no,’ I said. ‘Of course not.’”
“A few days later, I tried again. ‘We don’t have a cure,’ I explained. ‘But treatment can hold the disease down for a long time.’ The goal, I said, was to ‘prolong your life’ as much as possible.
“I’ve seen her regularly in the months since, as she embarked on chemotherapy. She has done well. So far, the cancer is in check. Once, I asked her and her husband about our initial conversations. They don’t remember them very fondly. “That one phrase that you used—‘prolong your life’—it just . . .” She didn’t want to sound critical.
“‘It was kind of blunt,’ her husband said.
“‘It sounded harsh,’ she echoed. She felt as if I’d dropped her off a cliff.”
Once you realize that Atul Gawande, couldn’t “find the right words,” you begin to understand: talking to a patient about dying is an art, like dying itself. It is not a matter of simply asking for an end-of-life directive. And it is probably not something that every physician can or should try to do. But every terminally ill patient needs a caregiver who is trained in helping a patient deciding how he wants to die, while helping the family accept the fact of death. As Dr. Susan Block, a palliative-care specialist at Gawande’s hospital later explained to him: “‘A family meeting is a procedure, and it requires no less skill than performing an operation.’
“One basic mistake is conceptual,” Gawande writes. “For doctors, the primary purpose of a discussion about terminal illness is to determine what people want—whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. They focus on laying out the facts and the options. But that’s a mistake, Block said.
“‘A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,’” she explained. “There are many worries and real terrors.” No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.
“There is no single way to take people with terminal illness through the process, but, according to Block, there are some rules. You sit down. You make time. You’re not determining whether they want treatment X versus Y. You’re trying to learn what’s most important to them under the circumstances—so that you can provide information and advice on the approach that gives them the best chance of achieving it. This requires as much listening as talking. If you are talking more than half of the time, Block says, you’re talking too much. . . .
“Given how prolonged some of these conversations have to be,” Gawande adds, many people argue that the key problem has been the financial incentives: we pay doctors to give chemotherapy and to do surgery, but not to take the time required to sort out when doing so is unwise. This certainly is a factor. (The new health-reform act was to have added Medicare coverage for these conversations, until it was deemed funding for ‘death panels’ and stripped out of the legislation.) But the issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is—what, in other words, we should and should not be paying for doctors to do.”
I agree. We need to give up the notion that the problem at the center of our health care system is all about money—having enough, not having enough, whether reform will boost the deficit. The truth is that we have enough money. What we spend now, per capita, far exceeds spending in any other developed country. The question is not funding—though we must think clearly about how we distribute our health care dollars, and try to be sure that we are spending them in ways that do patients more good than harm.
But as Gawande suggests, the toughest issues we face turn on questions about the purpose of medicine, and, I would add, the relationship between doctor and patient. Ultimately, that connection must be based on trust, founded on honesty, and tempered by humility. This means acknowledging that often, medicine is not about “cure;” it is about talking and listening, comfort and care. When we let technology take over medicine, we turn a physician into a technician, and a patient into an object—a body that succeeds or disappoints, depending on whether it responds to treatment.
Gawande sums up his argument about the function of medicine: “The simple view is that medicine exists to fight death and disease, and that is of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.
“More often, these days, medicine seems to supply neither Custers nor Lees.We are increasingly the generals who march the soldiers onward, saying all the while, ‘You let me know when you want to stop.’ All-out treatment, we tell the terminally ill, is a train you can get off at any time—just say when. But for most patients and their families this is asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and to escape a warehoused oblivion that few really want.”
Sara’s story is only one of many stories that Gawande tells in “Letting Go.” To read the full article, click here.
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