Being Mortal

Understanding the transformation of elder care helps Gawande think about some of its implications for medicine. Making people’s lives better in old age or ill health may not always mean fixing and controlling them. But it begs the question of when doctors should try to fix people and when they should not.

Sara Monopoli is 34 years old and pregnant when doctors discover that she has lung cancer, though she never smoked or lived with anyone who had. Doctors want to start treatment right away, so they induce her labor at 39 weeks so they can start. Luckily, the baby is born in perfect health. The next day, her oncologist Paul Marcoux explains that Sara’s lung cancer is very advanced. It is inoperable, but there are chemotherapy options that might allow for a period of recovery. This puts a gloss on a dire reality: the median survival for lung cancer is about a year. But Sara and her husband Rich don’t want to focus on survival statistics; they want to manage her diagnosis.

Sara starts chemotherapy and doctors put a tube into her chest to drain fluid that interferes with her breathing. Three weeks later, Sara returns to the hospital with a pulmonary embolism and starts on blood thinners. But then doctors discover that she doesn’t have the genetic mutation that the chemotherapy targets. Marcoux recommends more standard chemotherapy, but Sara has an allergic response to it, so they change drugs yet again. By October, the tumors have grown substantially. Sara takes the setbacks in stride, but by November, she doesn’t have the lung capacity to walk, and the cancer continues to spread. This poses the difficult question of what to do next.

The issue of treatment has gotten attention because of the rising cost of health care on incurable conditions where expensive surgeries and drugs often have little benefit. With most cancers, there are high initial costs, and if all goes well, it tapers off. But for terminal cancer patients, the cost curve is U-shaped, with an average cost of $94,000 during the last year of life with metastatic breast cancer, for example. Doctors are good at prescribing treatments but not at knowing when to stop.

Gawande speaks with an intensive care unit physician in his hospital. The physician says that of the 10 patients in her unit, only 2 are likely to leave. Many are elderly and tethered to pumps keeping them alive, drifting in and out of consciousness. Though they all knew that they had a terminal condition, they and their families were usually unprepared for this final stage and didn’t know how to prevent them from landing in the ICU.

In 2008, the Coping with Cancer project published a study that showed that terminally ill cancer patients who were admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who did not go to intensive care. People with serious illnesses have priorities besides prolonging their lives, like avoiding suffering, strengthening relationships, being aware, and not being a burden. The United States’ system of medical care fails to meet these needs.

In the past, the interval between recognizing one had a life-threatening ailment and dying was a matter of days or weeks. For example, George Washington developed a throat infection on December 13, 1799, and died the next day. There were guides published on the “art of dying.” In this short period, people attempted to reaffirm their faith, repent sins, and let go of worldly possessions and desires. Now, swift illness is the exception. For most, death only comes after a long medical struggle with an unstoppable condition, or the accumulating debilities of old age.

One morning, Gawande goes on patient rounds with Sarah Creed, who works with the hospice service. Hospice care is given to patients who have a life expectancy of less than six months, and patients who choose hospice care indicate that they are forgoing regular medical care like surgeries and other treatments.

First Creed visits Lee Cox, a 72-year-old woman with heart failure and pulmonary fibrosis, a lung disease. She is dependent on oxygen and unable to do ordinary tasks. Creed asks about Cox’s condition, and Cox admits that she now has trouble catching her breath while walking and has chest pains. Creed sees that Cox is out of heart medication and one of her inhaler parts is broken, so Creed makes calls to remedy these things. Cox’s spirits are low. She lives with her niece, but she feels that she’s in the way. Creed assures her that everything’s going to be okay and reminds her of a good day she had recently shopping with her niece.

Outside, Gawande asks why Creed is still trying to extend Cox’s life. Creed says that the goal of hospice is for people with a fatal illness to have the fullest lives possible in that moment. That means focusing on freedom from pain and maintaining mental awareness, not on life span.

Creed says when she meets patients, many haven’t fully accepted their fates. She says that her goal is simply to communicate what she can offer them to make their lives better. One patient, Dave Galloway, starts to experience unmanageable pain during his fight with pancreatic cancer. The whole lower half of his body swells with fluid. Hospice workers set up a pain pump, knowing he only has a few days to live. They give him a “comfort pack” of drugs and instruct his wife on how to care for him.

Dave and his wife Sharon are able to sleep through the night at home, and after a few days, they even go out to a restaurant (though Dave doesn’t eat). Hospice staff explain that Sharon shouldn’t give him intravenous feedings because of the swelling. As a result, Dave’s condition gets markedly better, but Sharon worries she is starving Dave. Dave also avoids using the pain pump because it feels like defeat. Creed tells him that no one can manage his amount pain without medication, and he needs to take it to be able to enjoy time with his wife and daughter. Hearing this, Dave uses the medication.

A week later, Dave dies—at home, at peace, and surrounded by family. A week after that, Lee Cox dies, too, of cardiac arrest. Hospice is a new kind of guide to the art of dying, but it is a struggle—against suffering but also against medical treatment.

When Sara Monopoli meets with her oncologist, Paul Marcoux, to discuss treatment in November, Sara understands that her disease is incurable. She leaves instructions about her wishes for her newborn daughter’s upbringing after she is gone, and on several occasions, she tells her family that she does not want to die in the hospital. But she avoids the prospect that the time might be coming soon and she pursues treatment.

Marcoux tries to reassure Sara and Rich. Marcoux knows that most of his patients will die, but he also wants to maintain hope. He talks to them about the option of supportive care, but also about some experimental drugs. To enroll in one, Sara would need to wait two months to get past her pulmonary embolism, and in the meantime, she can go back to chemotherapy. Gawande points out that with little thought, Sara is now on a fourth round of chemotherapy with a miniscule likelihood of extending her life and a great likelihood of causing debilitating side effects.

Gawande asks Marcoux what he hopes to accomplish for terminal lung cancer patients: Marcoux says he wants to gain them a good year or two—though he knows Sara and Rich are hoping for much longer. But Gawande notes that doctors often overestimate their patient’s survival time (the average is 530 percent too high) and don’t voice their prognoses, even when pressed. Doctors offer treatment options they believe aren’t likely to work, and they are hesitant to trample on a patient’s expectations.

Gawande recognizes this problem of not confronting reality in himself. In addition to lung cancer, Sara has a second unrelated thyroid cancer which is operable, and Gawande is called in to decide whether to operate. He knows that Sara will not likely survive her lung cancer, but he doesn’t want to let her thyroid cancer go untreated if she does survive. He avoids talking about this reality though, telling her that the priority is lung cancer, and they shouldn’t hold up that treatment for now.

Over the next months, Sara becomes steadily sicker, with the lung cancer spreading through her spine, liver, and lungs. She begins to need oxygen at home to breathe. The cancer spreads to her brain, meaning her experimental drug will no longer work. She completes five days of radiation treatment and eats almost nothing afterward. She confesses that she has double vision and can’t feel her hands, but she didn’t want to tell anyone for fear that they would stop treatments. Her chances are rapidly dwindling.

Gawande notes that for any terminal illness, there is almost always a possibility that patients could defy doctors’ expectations and live much longer. He notes that there’s nothing wrong with aiming for this goal, unless it means failing to prepare for the much more likely scenario: death.

For Sara, the end approaches, and she is unprepared. Three days before she starts another round of chemo, she wakes up and has extreme trouble breathing. Rich has no hospice number to call, so he dials 911. At the hospital, Sara is diagnosed with pneumonia. They give her intravenous antibiotics and high-flow oxygen. She begins to drift out of consciousness, and so they put her on a ventilator.

The natural impulse is to fight against our diseases, imagining that we have much more time than we do. We imagine that we can wait until doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. The impulse is to fix, to do something.

In the 1990s, insurance companies attempted to challenge these treatment decisions in terminally ill patients, but the strategy backfired. Nelene Fox was diagnosed with metastatic breast cancer in 1991, when she was 38. The cancer spread to her bone marrow and the disease became terminal. Fox had one chance: a new treatment of high-dose chemotherapy and bone marrow transplant. Her insurer, Health Net, denied her coverage for the cost. She raised $212,000 through charitable donations, but the therapy was delayed, and she died eight months after treatment. Her husband sued Health Net for bad faith, breach of contract, and punitive damages, and he won $89 million.

Paradoxically, Health Net was right. Research ultimately showed the treatment had no benefit and actually worsened the patients’ lives, but the jury verdict shook the insurance industry. In 2004, Aetna tried a different approach, increasing hospice options. The company allowed patients like Sara to continue medical treatment as well as having hospice care. People who used hospice jumped from 26% to 70%. Surprisingly, patients visited emergency rooms half as often and used hospitals and ICUs more than two-thirds less. Overall costs fell by almost a quarter.

Aetna ultimately finds that hospice’s benefit lies in patients’ ability to talk to someone knowledgeable about their daily concerns, and that was enough. Evidence for this theory has grown in recent years. Those who enroll in hospice and have discussions about end-of-life care suffer less, are physically more capable, and are better able to interact with others. Their family members are also less likely to experience persistent depression after their deaths.

A 2010 study followed two groups of people: one group who received oncology care and another group which received the same care plus visits with a palliative care specialist, who specializes in preventing and relieving suffering. Those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice earlier, experienced less suffering, and lived 25 percent longer. “If end-of-life discussions were a drug, the FDA would approve it.” Multiple studies show that hospice care actually extends survival, showing the failure of current decision making in medicine.

In La Crosse, Wisconsin, elderly residents have unusually low end-of-life hospital costs and an average lifespan of more than a year longer than the national average. During their last six months, they spend half as many days in the hospital as the national average. Their ICU has no patients with terminal diseases like heart failure or cancer. The difference can be traced to 1991, when local medical leaders began a campaign to get doctors and patients to discuss end-of-life wishes. It became routine for all patients in hospitals, nursing homes, or assisted living facilities to be asked four questions about severe medical interventions to keep people alive (e.g., intubation and mechanical ventilation).

By 1996, 85 percent of La Crosse residents who died had a written advanced directive like this, and doctors knew the instructions and followed them, making their jobs vastly easier. Sometimes patients’ answers change, but it means that people are far more likely to have talked about what they want or don’t want before crises. The discussion is what matters most.

One winter morning, Gawande meets with a patient he operated on the night before. She was having an ovarian cyst removed when the gynecologist discovered she had metastatic colon cancer. He removed a section of her colon, but the cancer spread widely. Gawande doesn’t want to beat around the bush, remembering how timid he was with Sara Monopoli. He explains how much the cancer spread, but also minimizes it and says that chemotherapy can be very effective. When she asks if she’s going to die, he assures her no. He says that they don’t have a cure, but treatment can “prolong your life.”

Years later, the woman continues to do well with treatment. Gawande asks the woman how she remembered their initial conversations. She says that “prolong your life” sounded harsh, like Gawande was dropping her off a cliff. Susan Block, a palliative care specialist, explains that doctors often make mistakes in these conversations: for them, the primary purpose of the discussion is to determine what patients want—facts and options. But the goal is actually to try to learn what is most important to patients under the circumstances, so that doctors can provide the information and advice on the best approach.

Block’s 74-year-old father Jack was admitted to a hospital 10 years earlier with a mass growing in the spinal cord of his neck. The neurosurgeon said that the procedure to remove the mass carried a 20 percent chance of leaving him quadriplegic, but without it he had a 100 percent chance of becoming quadriplegic. The evening before surgery, Block realized that she had no idea what her father wanted in dire scenarios, and so she asked him what quality of life would be tolerable for him. He said that if he can eat chocolate ice cream and watch football, then he’s willing to stay alive. Block would never have expected him to say that. 

The conversation proved critical, because after surgery Jack developed bleeding in his spinal cord. Doctors could save his life, but the bleeding would likely leave him disabled forever. When Block learned that he would still be able to eat ice cream and watch football, she told them to save his life. Without their conversation, she would not have known what to do. Over the next two years, Jack regained the ability to walk short distances and still had partial use of his hands—enough to write two books. Eventually, though, he had too much difficulty swallowing. He cycled through hospitals and rehabs until he decided to start hospice care. He died five days later.

Block and Jack had the necessary conversation to figure out when to switch from fighting for time to fighting for other priorities. Few people have these conversations, but they are necessary. In another case, an oncologist tells Gawande about a 29-year-old patient she had with an inoperable brain tumor that continued to grow through two rounds of chemotherapy. They had hours-long conversations about how treatments likely wouldn’t work. The patient opted for hospice and spent a month with his family before his death. Later, his parents thanked the oncologist, glad that they were able to focus on being together in his final weeks.

Medicine exists to fight death, but eventually death wins. In a war you cannot win, you want a general who knows how to fight for territory that can be won and how to surrender when it can’t—not to fight to the point of total annihilation. Often, doctors are neither. They march soldiers onward while asking the patients when to stop. But patients aren’t able to make rational decisions—they have no experience to draw on. They need doctors willing to have hard discussions.

Sara Monopoli had discussions with her family and told them that she did not want to spend her dying days in hospitals or ICUs, but she didn’t know how to achieve that goal. That’s when her primary care physician, Chuck Morris, stepped in. The morning she was admitted to the hospital in February with pneumonia, he explained that this was likely the end. Even the oncologist was rattled by her condition.

Morris, Sara, and her family had a discussion. They instructed the medical team to continue antibiotics, but not to put her on a breathing machine if things got worse. They gave her palliative care and morphine, but they stopped the medical team from putting a catheter in or doing more lab tests. In the previous three months, none of the scans or radiation had achieved anything—they may actually have worsened her condition. But at the very end, Sara was spared from greater discomfort. That day, Sara fell into unconsciousness as her body failed and she passed away.