Being Mortal

Traveling abroad, Gawande discusses Sara’s case with two doctors from Uganda and a writer from South Africa. They say that most people with terminal illness in their countries would not go to the hospital, and the health system wouldn’t have money for it. But their stories still sound familiar: a grandparent on life support against his wishes or a relative who died in the hospital on an experimental treatment. This reflects the fact that 5 of the 10 fastest-growing economies are in Africa, and better medical care is becoming widely available.

There are three stages of medical development in any country: first, when a country is in extreme poverty, most deaths occur at home. In the second stage, as countries grow economically, people turn to health care systems when they are ill. At the end of life, they die in hospitals. In the third stage, when a country’s income climbs to the highest level, people become concerned about quality of life in sickness, and deaths at home rise. This pattern is occurring in the United States: in 1917, a majority of deaths occurred in the home, but only 17 percent did in the 1980s. In 2010, 45 percent of Americans died in hospice care—either at home or at a hospice facility or nursing home.

But the United States is still in a transitional phase of how to face mortality and preserve a meaningful life, and Gawande faces this question with his father. Gawande’s father always had tremendous energy, but in his 70s, he started to experience neck pain and tingling fingertips. Over the next few years, the neck pain progressed, and numbness spread through his left hand. He began having trouble tying sutures in his surgery practice. In the spring of 2006, he got an MRI, and doctors found a tumor growing in his spinal cord.

In that moment, Gawande and his father begin their own journey to confront mortality. The tumor mass fills the entire spinal canal, from the base of his father’s brain to his shoulder blades. Gawande is amazed that he isn’t completely paralyzed. They try to talk about what they can do, as two surgeons, but they have difficulty discussing the severity of the issue. Spinal cord tumors are rare, and few neurosurgeons have experience with them. They decide to see two experienced neurosurgeons: one at Cleveland Clinic, and one at Gawande’s hospital in Boston.

Both doctors offer surgery to remove part of the tumor and to make more room for the rest of it so it doesn’t crush the spinal cord. The neurosurgeon in Boston suggests operating right away, as the situation is dangerous. The surgery has risks, but he is more concerned about Gawande’s father’s tumor. The surgeon at the Cleveland Clinic, Edward Benzel, doesn’t push to operate right away, as he said some spinal cord tumors take years to progress and often do so in stages. The operation also carries a 25 percent chance of causing quadriplegia or death.

Gawande’s father fears both the tumor and the surgery. He asks the surgeons questions about how the operation would be done. The Boston neurosurgeon grows exasperated with the questions, and Gawande’s father realizes that this isn’t the surgeon for him. Benzel, however, recognizes that Gawande’s father’s questions come from fear, and he takes the time to answer them. Benzel also realizes that Gawande’s father seems more afraid of surgery than the tumor. Gawande’s father agrees, explaining that he doesn’t want to lose the ability to do surgery for the sake of an uncertain treatment. He elects not to have the surgery yet.

In the end, Benzel’s assessment proves correct. Gawande’s father notices no change in symptoms for a year, when a repeat MRI shows the tumor has grown. But a physical examination finds no changes in Gawande’s father’s strength, sensation, or mobility, so they go by how he feels. He keeps driving his car, playing tennis, and doing surgery. His neurosurgeons know what matters to him and let him live his life.

During medical school, Gawande read a short paper by Ezekiel and Linda Emanuel on the different kinds of relationships that doctors can have with patients. The most traditional relationship is paternalistic: doctors instruct patients what to do and tell patients only what they think patients need to know. It is a doctor-knows-best model, and though it is often denounced, it remains common for doctors who deal with the frail, poor, and elderly.

The second type of relationship is “informative.” Doctors explain the facts and figures of different treatments, then ask what the patient wants. This is increasingly common for doctors, and it works well when choices are clear and trade-offs are straightforward. But the reality is that people want information and control, but they also want guidance. This is the third type: “interpretive.” Benzel was exactly that kind of doctor: he helped provide information and guided Gawande’s father’s decision.

Gawande has always been most comfortable as Dr. Informative, but this was not sufficient to help Sara Monopoli. Around the time of his father’s visits with Benzel, Gawande started seeing a 72-year-old patient named Jewel Douglass who had metastatic ovarian cancer. Douglass had been in treatment for two years, and most patients at her stage survive two years, but about 20% of patients become cured. After three rounds of chemotherapy, her tumors shrank, but her side effects were very bad, including terrible nausea and fatigue. Then she developed pains in her stomach and began vomiting up everything she ate, which led doctors to discover a blockage in her bowel.

Gawande reviewed the scan of the blockage, but he couldn’t make out exactly how the cancer was causing it. It is a problem that could potentially resolve itself, but it might only resolve with surgery. In either case, it indicated a troubling sign of cancer growth. Gawande presented Douglass with the fact that the blockage could resolve itself, but if not, they’d have to talk about surgery. Still, he avoided the more difficult issue: her cancer’s severity. A day later, Douglass’s situation grew much better, and she stopped vomiting up her food. But before leaving, Gawande decided it was important to talk about the larger issue.

Bob Arnold, a palliative care physician, explained to Gawande that the mistake clinicians make in these situations is to supply facts and descriptions; instead, they should explain what the information means using three words: “I am worried.” Gawande explained to Douglass that her tumor was still there, and the blockage was likely to come back. This communicated the seriousness of the situation, the fact that Gawande was on her side, and that there was still cause for hope.

A few months later, Gawande asked Douglass about this conversation. She said she was horrified, but recognized that he was trying to be gentle, and she was glad they spoke. The day after her discharge from the hospital, she was readmitted for more vomiting. This second episode also subsided quickly, but it helped her realize that her tumor was closing in and medicine could only provide brief rescue. She decided to take a vacation with her family, and when she returned, she took a break from chemotherapy, refusing to be weighed down by the side effects. She wanted to take advantage of the time she had left, just like Gawande’s father.

After his diagnosis, Gawande’s father continues life as he always has. But he visits his grandchildren more often and puts in an extra trip to family in India. As time goes on without his symptoms worsening, his ambitions return once again—he runs for district governor of Rotary for southern Ohio and wins. Then, two and a half years after his diagnosis, his symptoms change—he develops more numbness in his right hand. He retires, but still waits to get the surgery. He throws himself into his work as Rotary district governor, determined to control his life and adapt after losing his work, something that mattered so much to him.

The following spring, Gawande’s father loses strength and has trouble walking. He and Gawande then have a difficult conversation. Gawande’s father explains that he doesn’t want to be a burden and he worries about taking care of himself. In turn, Gawande asks what his father wants out of the end of his life. Gawande tells him about Jack (Susan Block’s father), who said if he could still watch football on TV and eat ice cream, that would be good enough for him. Gawande’s father disagrees, saying he wants to be in charge of his life. He doesn’t want a ventilator or a feeding tube, and he is more afraid than anything of becoming paralyzed. Afterward, they are both relieved to have had the conversation.

Gawande’s father decides it is time for the surgery, and Gawande and his mother go with him to the Cleveland Clinic. Two hours into the surgery, his father goes into an abnormal cardiac rhythm and his blood pressure drops. The doctors stabilize him, but there is uncertainty about proceeding, and Benzel comes out to consult Gawande and his mother about what to do. Gawande knows from their conversation that his father is more concerned about becoming quadriplegic than dying, and so he asks which carries the greater risk: stopping or proceeding. Benzel says stopping, and so they ask him to continue the operation.

Seven hours later, Benzel returns and explains that the rest of the operation went well, and when Gawande’s father wakes up, he has no major loss of motor function. With his fingers, he communicates to them that he is “HAPPY.” A day later he leaves the ICU and spends three weeks in a rehabilitation center. He returns home feeling stronger than ever, walking and experiencing little neck pain. He made the choices that mattered to him.

The choices don’t stop, though. After Gawande’s father recovers, he sees a radiation oncologist for his tumor, who suggests radiation and chemotherapy. Gawande’s father is hesitant about sacrificing more of his life for treatments, but the doctor explains that the side effects will be minimal and he has much to gain from the treatments.

Unfortunately, the doctors were not realistic about the radiation’s benefits and drawbacks. Over time, Gawande’s father experiences stabbing pains in his back and neck, nausea, throat pain, fatigue, and loss of his sense of taste. And in the end, nothing improved. He lost weight because he had no desire to eat. The numbness in his left hand spread, and he also gained numbness in his lower extremities. He gets vertigo and his neck and back spasms persist. After a six-month MRI, the tumor has expanded.

Gawande and his father and mother see a different oncologist, but she, too, proceeds in information mode, laying out eight or nine chemotherapy options. She says that the likelihood of tumor response is 30 percent. She says Gawande’s father could be back on a tennis court that summer. Hearing this immediately tips off Gawande’s father, realizing the fantasy she is presenting to him. He asks if the drugs will make his side effects worse, and she allows that they might. She takes them through each of the drugs, but the conversation becomes confusing and data-driven.

Gawande’s father asks what would happen if the tumor progressed. The oncologist explains his upper and lower extremity weakness would increase, and difficulty getting oxygen would become the biggest problem. Gawande asks her straightforwardly about time frames for people with no treatment versus with treatment. She says without treatment, people live three months to three years. With treatment, people don’t usually live much longer than three years but the average is longer. This is a startling estimate, as the Gawandes were not thinking in a time frame this short. Gawande’s father takes time to think about his options, and in the meantime he experiences several painful falls. When Gawande visits after one of them, he notices that his father’s condition is growing much worse, and his mother can’t do much to help.

Gawande searches around his parents’ area for different end-of-life options for his father. He speaks to Margaret Cohn, a retired biologist whose husband has a severe form of arthritis. Together, they formed Athens Village, a program that created neighborhood support for the aged to stay in their home. The neighborhood has a handyman and a part-time director who checks up on people. A nurse agency provides a discount on nursing aide costs, and church organizations provide a transportation service and meals on wheels. This helps people like the Cohns stay at home even as they become more disabled.

The Gawandes talk about joining Athens Village; the only other option is home hospice care. They meet with a hospice nurse, who impresses Gawande. She makes clear that she cares about Gawande’s father and his pain, not about his disease or diagnosis. She asks Gawande’s father what he thinks about hospice, and he says it may be best because he doesn’t want chemotherapy. She says hospice is about managing his pain, giving him nursing visits and providing emergency support. He can also end the services at any time.  She asks if he wants to start now or think about it, and he says start now.

The nurse asks Gawande’s father about his biggest concerns: he says he wants to stay strong while he can and to be able to type. The nurse stays for two hours, examining him, inspecting the home, and giving the family instructions on how to help. She also discovers that Gawande’s father has been adjusting his own medication doses, and she tells him to stick to a routine so they can sort out the best dosage. She also tells him not to attempt to get out of bed without help. He agrees.

In the coming days, Gawande is amazed to see the difference from these two simple instructions. The nurses help his father smooth out his medication, and as a result, his father’s pain control improves. In addition, he has no more falls, which had each set him back severely. His slide into quadriplegia halts completely, and his control of his hands and arms improves. He even starts hosting parties again.

Two months later, Gawande returns to visit him and give the graduation address at Ohio University. When the day comes, Gawande’s father is able to walk the length of a basketball floor and up a flight of steps for the first time in half a year. This is the impact of a different kind of medicine and the ability to have hard conversations.