The Art of Dying Well

by Katy Butler

  At Maimonides Cancer Center in Brooklyn, she underwent a PET scan and a bone biopsy to explore a suspicious-looking area in her lower spine. She then scheduled a meeting with the nation’s top academic expert in her cancer, at his office in a university medical center in Philadelphia.

  She and her mother, Rose, who joined her from Florida, checked into a hotel and went for a walk in the rain through a neighborhood of shuttered antiques shops. They were planning to meet friends for dinner and, after the doctor’s appointment the next day, go shopping for the wigs Amy would need when chemotherapy temporarily robbed her of her hair.

  Amy’s cell phone rang. It was her oncologist at Maimonides, calling about the biopsy. Clusters of cancer cells had been found in Amy’s spine. She blurted out the news to her mother. They dropped their umbrellas and held each other as the rain poured down.

  “I thought, in that moment, I have a very short life span,” Amy said. Her cancer had spread and would eventually kill her. Eleven to 20 percent of people with her diagnosis survive five years, and only a handful live more than seven.

  Thoughts rushed through her brain. Who would guide her daughter after she was gone? How would she tell her sister, who was also her best friend? “I thought about what I was going to be giving up, about saying goodbye to people. It was a succession of overwhelmingly negative thoughts about what it means to have a terminal illness,” she said. “Looking into my mother’s eyes, I felt I had injured her heart, and that made me feel just that much worse.”

  She and her mother returned to the hotel, where Amy caught a glimpse of herself and her mother in a lobby mirror. Their faces were distraught, blotchy, and red; their eyes puffy; their cheeks slicked with tears and rain. “Seeing how I was appearing to the world shocked me into thinking, I have decisions to make,” she said. “I turned to my mother and said, ‘We need to take three deep breaths.’ We took three deep breaths and burst out laughing.”

  Amy said to her mother, “If I spend my remaining days mourning the cancer, the cancer wins. It will take away any goodness in my life, and I refuse to allow that to happen.”

  They decided to go ahead and do what they would have done had there been no crisis. They returned to their rooms, put on fresh makeup, and went out to dinner with their friends. “It was a lighthearted dinner,” said Amy. “It set us on a path of living and not dying.”

  The next morning, Amy told the famous oncologist about her biopsy results. He didn’t pause. “Here’s what we’re going to do,” he said, plowing ahead with his plan: six weeks of intense chemotherapy followed by surgery to remove her breast. Then radiation and another round of chemo.

  Amy was being invited to play a role she didn’t relish—that of the unquestioning patient who heroically “battles” her disease to the end. The doctor’s aggressive, hail-Mary treatment plan would expose her to great suffering, and then she’d bump along—for who knew how long?—in severely damaged health. And for what? Her cancer couldn’t be rooted out. She questioned the unspoken assumption that the most harrowing treatment would produce the best possible result.

  The interaction was one-sided and top-down. The oncologist asked no questions. He assumed that Amy cared mainly about attacking the cancer, no matter how devastating the collateral damage to her body and her life. It was her job, apparently, to participate in a common modern medical ritual: not to question why, just to do—and then die. “There was no conversation,” she said. “He was expert in everything but what really mattered to me. I thanked him for his time and left.” She returned to her cancer doctor at Maimonides and never went back to Philadelphia.

  Amy opted for a different rite of passage: a quiet declaration of independence. As she went forward, her doctors would be her consultants, not her bosses. She would seek out those who were curious about what mattered to her and willing to shape their treatment plans accordingly. She would weigh her medical options in the light of their impact on what the poet Mary Oliver called “your one wild and precious life.” She would stay in the driver’s seat. It was her life and her death.

  Back at Maimonides, her original oncologist asked a more welcome question: “What do you want to accomplish?” Amy said she hoped for “Niagara Falls” trajectory: to live well for as long as possible, and then to plunge over the waterfall to death without undue delay. The oncologist suggested she start with a daily pill of Femara, which inhibits the body’s production of estrogen, a stimulator of breast cancer growth. There would be no radiation, no chemo, and no mastectomy. The aim wasn’t cure. It was to slow Amy’s cancer while interfering as little as possible with her life.

  It’s been seven years since Amy stood weeping with her mother in the rain. She knows her days are numbered and she accepts it. She remains on the top side of Niagara Falls. Femara held her cancer at bay for four years before, as expected, it stopped working. She’s now on a second estrogen-inhibiting pill, tamoxifen, which she expects to be effective for about half as long as Femara was. She takes another drug to keep her bones strong and to fend off the osteoporosis that is a by-product of tamoxifen. She finds other side effects—prematurely aging skin, energy loss after taking her pills at night, and high temperatures that feel like sustained hot flashes—acceptable in light of her hunger for continued life.

  She’s never spent an afternoon in a recliner while a toxic chemotherapy dripped into her veins. She’s never been hospitalized, or been too weak to drive, or needed a home health aide. Her hair hasn’t fallen out. She hasn’t gone into debt. She has climbed the Great Wall of China, ridden a jet ski to the base of the Statue of Liberty, and seen her daughter, Stephanie, graduate from college and get married. She has made quality of life her priority, and paradoxically she’s outlived many people who opt for more grueling treatments. “Most doctors,” she says, “focus only on length of life. That’s not my only metric.”

  We are all mortal. But knowing this abstractly and feeling it viscerally are not the same. The bad news may arrive as a stunning diagnosis, or more ambiguously and unpredictably, as a vital organ slowly fails. Sometimes incurable illnesses (and their treatments) create long periods of disability, necessitating immediate plans to get caregivers and support teams in place. Others permit months to years of continued high functioning.

  People who do well in this health stage have usually mastered the tricky art of accepting death while continuing to live. They decide what matters to them and make their medical choices according to their own lights. They do what they love. They expand the boundaries of the word “hope” to encompass miracles beyond cure, such as family reconciliation, leaving their survivors in good shape, or taking the grandkids on one last memorable trip to Disneyland. They often get support from a relatively new medical specialty: palliative care. This misunderstood approach focuses on relieving suffering, improving day-to-day well-being and functioning, and helping patients make medical choices in alignment with what matters most to them.

  TALKING TO YOUR DOCTOR

  In modern health care, doctors sometimes deliver bad news and then barely pause before proposing (or simply informing you of) their plan for your treatment. I suggest you stop and take a breath after receiving a tough diagnosis. Most forms of modern death move slowly. There is no harm in taking a few days to tend to the soul, to let awareness sink in, to talk with friends, and to gather information before deciding how you want to proceed. Going forward you will need clear information, support in grieving your losses, and time to reflect on new ways to define hope.

  “You almost become numb,” said Ron Belcher, who was seventy-two and had severe congestive heart failure when he was told that his colonoscopy had revealed early signs of colon cancer. Much to his surprise, his surgeon bluntly recommended against surgery. His cancer, she said, was slow-growing; he was more likely to die with it than of it. Given the stress of the operation and the severity of his heart problems, she said, he had a 90 percent chance of dying within two months if he had surgery.

  “You say to yourself, o
kay, I gotta process this, but I can’t process this right now,” Ron said. “I’m in front of a group of doctors and a daughter-in-law who’s also had cancer. I’ve got to go home and meditate, think about this in private, mull my options, and cry if I need to cry.” Ron took a week to discuss the pros and cons with his family and decided against surgery. “I appreciated that my surgeon didn’t beat around the bush,” he said, “but it was the most gut-wrenching decision I ever had to make.”

  Find people capable of listening to you without judgment—be it a friend, relative, or hospital social worker or chaplain. Most health systems offer support groups for people with terminal illnesses, and there you may find a welcoming community that can address every dimension of your experience—not just your medical decisions, but your emotional, practical, and spiritual concerns. People who go to support groups tend to be less stressed and better informed than those who don’t attend them, and sometimes they live longer.

  After awareness and acceptance comes action. When you feel capable, it’s time to hold an honest, difficult, conversation with your doctor. These talks can be so painful that most doctors and patients simply don’t have them. But they are vital if you want to lay continued claim to your life and your death. Ariadne Labs in Boston, founded by the surgeon-author Atul Gawande, is doing the critical work of training doctors in how to hold these conversations, as is oncologist Anthony Back, of the University of Washington, at Vitaltalk. But until training improves, “physicians are waiting for the patient to bring things up and patients are waiting for the physicians to bring them up,” says Alvin H. “Woody” Moss, MD, a kidney specialist and palliative care doctor at the University of West Virginia’s medical school. “There’s a conspiracy of silence.” Break it.

  * * *

  In one study of patients with fatal lung cancers, half hadn’t discussed hospice with their doctors two months before their deaths, and in another, three-quarters of patients with incurable, metastatic lung cancer had the mistaken impression that cure was possible. As Moss puts it bluntly, “Doctors usually sugarcoat how bad things are.”

  If you can, bring a friend or relative to the meeting to provide emotional support, take notes, and ask follow-up questions. Amy Berman recommends that you open with some version of “I want a realistic picture, so I can plan.” If the answers you get are filled with incomprehensible medicalese, I suggest you try some version of “I don’t understand. Would you say that again, more simply?” And if you get a clear answer, it’s great to say, “Thank you, that is exactly what I was looking for!”

  Some physicians worry that telling you the truth will take away your hope. But knowledge is empowering. People with a clear understanding of the courses of their illnesses tend to do as well or better physically than those kept in the dark, and they don’t suffer any more or less emotional distress. “Some people don’t want to know what the future holds,” says Ron Hoffman, the founder of Compassionate Care ALS (Lou Gehrig’s disease) in Falmouth, Massachusetts, who has supported hundreds of people through the last stages of their lives. “But on the whole, those who are willing to explore and navigate the terrain of their mortality have more peaceful, gentle, and even beautiful deaths.”

  Some people get angry when their doctors deliver bad news bluntly. But consider, for a moment, the alternative. One nurse, assigned to improve treatment of the terminally ill in her large health system’s emergency rooms, told me of encountering “staggering numbers of patients with devastating symptoms of stage four cancers who were told they were dying by [an emergency room] physician who did not know them.” They were shocked by the news and sent home to die under hospice care, making it unlikely they’d ever again see, or say goodbye to, the oncologist with whom they’d developed a trusting relationship.

  “These patients often feel abandoned at their greatest moment of need,” she went on. “But we have not been successful in working with the oncologists to have honest discussions earlier, because the oncologists tell us their patients fire them if they are truthful.”

  UNDERSTANDING THE TRAJECTORY OF YOUR ILLNESS

  Go ahead and ask. Make sure you understand the trajectory of your illness if it follows its usual course. If you have cancer, get clear on its stage and its type in the context of your age and overall health, which will shape your trajectory. Some cancers are curable and others, including almost all stage four cancers (despite recent advances in immunotherapy) are not. Some move slowly and, with treatment, permit years of high functioning, and others usually kill within a year. Precise predictions of the time you have left are rarely accurate, and doctors, on average, overestimate their patients’ survival time by four to six times. You can, however, get a rough estimate of whether you have “days, weeks, months, or years.” That is meaningful enough to frame your choices.

  Take a step further. Ask not only about length of life, but about how you will feel and function, and how proposed treatments may affect your well-being. You may need to find caregivers or a health care agent, to sign an advance directive, to buy adaptive equipment, or to apply for Social Security disability or other public benefits. You may choose to say no to drugs and procedures with severe side effects and dubious payoffs. Or, if you know that a treatment will be debilitating, you may seize the bittersweet gift of time to first take a photography class or visit relatives, or to reconcile with an estranged family member.

  * * *

  Improving your understanding and command of the situation can reduce feelings of helplessness, and give people who love you specific ways to help. If your doctor refuses to discuss your prognosis at all—and some do—consider that a warning sign. You are unlikely to feel empowered if you are left in the dark. If, after a try or two, you still have only the foggiest picture, I suggest you find a new specialist who is more forthcoming, or add a palliative care doctor to your team, as explained on page 90. As a supplement, the American Cancer Society offers accurate information online, and so does the Mayo Clinic. (Beware, however, of sites primarily funded by pharmaceutical companies and others that are trying to sell you something.)

  Many people find that a pen-and-paper sketch helps them visualize what the future holds. Below are four common trajectories to the end of life. Three of them (Niagara Falls, Looping Decline, and The Dwindles) were first formulated in 2005 by the pioneering geriatrician Joanne Lynn and were included in 2014 in Atul Gawande’s bestselling book Being Mortal. The stair step pathway was first sketched for me by a counselor for the Alzheimer’s Association.

  You might ask your doctor which best fits your situation, and if none do, ask him or her to draw you another.

  The Niagara Falls Trajectory

  This pathway is marked by months to years of high functioning, followed by a rapid decline of a few weeks or months. It is common in kidney failure without dialysis and in cancers treated once or twice. When symptoms are well managed, thanks to palliative care or hospice programs, people often can continue to work, do things they enjoy, and even go out for coffee with friends until a few weeks before death.

  Looping Decline

  Repeated health crises land people in the hospital, where they recover somewhat and return home, only to decline until the next crisis. It’s hard to precisely predict death, as there’s no way of knowing which hospitalization will turn out to be the final one. This trajectory is common during the failure of vital organs, in heart and lung diseases that often strike in the seventies and eighties, and in cancers at any age treated repeatedly with chemotherapy and radiation with strong side effects. People need help with daily chores, at first occasionally and then frequently. Some crises can be averted with physician house calls and close medical management. Death sometimes comes after a final catastrophe, and sometimes after a patient tires of repeated treatment or says something like “no more hospitals.”

  Stair Step Down

  Long and short plateaus are punctuated by sudden, drastic drops in functioning. Each “new normal” is worse than the one before. This
pattern is common in people who have repeated strokes or vascular dementia, and in the old and frail who undergo repeated hospitalizations that set off delirium (hallucinations and prolonged cognitive confusion) or otherwise inadvertently cause harm.

  The Dwindles

  Strength and vitality fade away, along with appetite and interest in living. Small maladies accumulate, senses fail, muscles weaken, and over time the body just wears out. The need for help with daily life may last as long as a decade. This trajectory is common in dementia, extreme old age, and kidney failure with dialysis. Medical decisions often fall to family members. Death sometimes comes naturally and gently, or after a decision to forgo antibiotics or otherwise let nature take its course. At other times, death arrives in the form of a pneumonia, a broken hip, or an infection that would not have vanquished a hardier person.

  PREPARING THE FAMILY

  Share your sketches with your family. It takes time for people to absorb the notion that you will die someday, and the unprepared can wreak havoc at the end of life. Keep talking until everyone accepts the truth. Doctors say that it’s often a conflicted family member who insists on risky, last-ditch treatments. The doctors go along because they fear lawsuits, complaints, and bad professional reviews. “I can’t begin to tell you the times I did not want to operate on someone because it was futile or because the quality of their remaining time would greatly suffer,” one surgeon told me. “But the family were absolutely dead set and insisted on ‘everything being done.’

  “Sure, I could refuse and recommend they find another doctor, but if the patient dies in the meantime, I come under fire and ‘review’ even if I believe that not intervening is the right thing. If a family even tries to file a lawsuit, it stays with a physician’s record.” So she reluctantly performs Hail Mary surgeries after, as she puts it, “covering my butt” by thoroughly documenting that she has disclosed the risks. This sometimes ends with watching a patient die a horrible death, sedated and on a ventilator. “It’s painful for me to see and experience this,” she said, “since I am part of why (despite not wanting to be) the patient is not having a dignified death.”