The Art of Dying Well

by Katy Butler

  Marijuana for medical purposes, now legal in twenty-nine states, has been used in the West since at least 1850, when Ada Lovelace, the pioneering English mathematician and daughter of Lord Byron, used it to relieve the pain of her terminal cancer. Some palliative care physicians prescribe marijuana extracts containing high levels of THC (tetrahydrocannabinol) and say they improve appetite, and control pain and nausea better, than prescription pharmaceuticals—with the enjoyable side effect of euphoria. Hemp-derived oils saturated with the more staid psychoactive compound CBD or cannabidiol (a less mind-bending component of marijuana and hemp which is not on the federal government’s list of controlled substances) are widely available online without prescription. CBD is reported to relieve pain and anxiety without producing the euphoria of THC, but it doesn’t improve appetite.

  REDEFINING HOPE

  “I am not a huge fan of hope,” says oncologist Tony Back. He urges his patients not to concentrate so hard on hopes that they forget about today. “A lot of people want to finish something,” he says. “They want to end up in some kind of peace, or to reconnect with people in some way. If only they could orient themselves to enjoy what is happening in the moment!” He also urges them to think about this question: “What is something you could do today that you could really enjoy?”

  Below are some hopes, and some rites of passage, to consider, in place of a futile war on death:

  Leave a good emotional legacy. In anticipation of death, some people write “legacy letters” to their children and grandchildren, describing what life has taught them. Others write milestone letters for daughters and sons to open on the day of a college graduation or wedding. “To be there when a son or daughter has a first child—that may not be an achievable goal,” says Shoshana Helman, a palliative care doctor at Kaiser Permanente in Redwood City, California. “But writing a letter that can be opened at that time is achievable.”

  Enjoy the time you have left. When Ted Marshall, a fine carpenter trained in traditional Japanese joinery, learned he had the deadly brain tumor glioblastoma, he and his wife, Sharry, threw everything possible into the path of his cancer: surgery, radiation, conventional chemotherapies and off-label drugs, oriental medicine, a low-carbohydrate diet, a skull cap that zaps tumors with electrical currents, and blue scorpion venom from Cuba.

  They also talked openly about how they wanted to live if Ted had six months to two years left. Sharry wanted him to be as happy as possible. Ted wanted to finish renovating the apartment they’d bought in a cooperative housing community in Richmond, California, so that he’d leave Sharry housed and in good financial shape.

  The couple took as their motto “Don’t postpone joy.” In the first year, they went to a cowboy poetry gathering in Elko, Nevada; a fiddle festival in Port Townsend, Washington; and American “roots music” gatherings in Asheville, North Carolina, and Clifftop, West Virginia. After their return, Ted finished remodeling the couple’s home with the help of friends. “We did a good job,” Sharry said, “of wringing every drop of fun we could out of the life he had left.”

  Over the next three years, Ted gradually lost the ability to spell, to work, to drive, and to remember to close the refrigerator. Nothing about it was easy, but he died peacefully at the age of sixty-eight, under hospice care, in the couple’s beautifully renovated, mortgage-free home.

  Go on an adventure. Norma Jean Bauerschmidt, a retired nurse of ninety living in Presque Isle, Michigan, refused a hysterectomy and chemotherapy after learning she had stage four uterine cancer. She declined to enter a nursing home and instead moved into an RV with her son and daughter-in-law. The trio spent a year visiting national parks, with Norma moving about at first on foot, then in a wheelchair, and ultimately with the help of an oxygen tank. Instead of undergoing CAT scans, Norma got her first pedicure, mounted a horse, and rode in a hot-air balloon.

  A month before her death, her son parked the RV on a friend’s land in Friday Harbor, on Whidbey Island off the coast of Seattle, and Norma enrolled in hospice care. She was ninety-one when she died, thirteen months after setting out on the road.

  Leave loved ones in good shape. Amy Berman and her daughter, Stephanie, have updated the house they share, choosing paint colors and finishes in Stephanie’s taste—“so it can feel like hers when I’m gone,” as Amy said. Her daughter currently writes the checks for the household bills, so she won’t be at sea after her mother dies. Mother and daughter frequently get together with extended family, to ensure that Stephanie will feel known, protected, and loved in the future.

  * * *

  Amy keeps a notebook with detailed information about how to handle her finances and run the household when she is alive but no longer able to manage. She’s written notes about her gravesite, whom to call after she dies, and even where to order the food for the gathering after her memorial service. Her bank account will roll over to Stephanie automatically on her death, and so will her 401K.

  “These acts may sound mundane but they are all deep acts of acceptance of my mortality and my focus on those I will leave behind,” Amy said. “They’re selfless acts of love, even if they seem trivial.”

  Amy doesn’t have strong preferences for her funeral, as she thinks its purpose is to comfort the living. But she expects that her daughter will follow traditional Jewish mourning rituals, beginning with sitting shiva—staying home with mirrors covered and a candle burning for seven days while receiving visits from friends who bring food and share memories of her mother. Stephanie will recite the mourners kaddish, a short daily prayer glorifying God, for eleven months. On the one-year anniversary of Amy’s death, and every year thereafter, Stephanie will light a yahrzeit anniversary candle, which will burn for twenty-four hours before the flame dies out. Also on the first anniversary, Amy said, “My daughter will do an unveiling of my headstone as the closure on her grieving. When she visits my grave in future years, she will find a stone to leave on my headstone.”

  All that is in the future. For the present, Amy says, “I don’t think about myself as dying. I am living until proven otherwise and I choose to live fully.” You don’t need a fatal diagnosis to live with this double awareness.

  Ways to Prepare:

  • Pause before making any major medical decisions.

  • Join a support group.

  • Find a palliative care doctor or nurse.

  Break the silence and ask your doctor questions, including:

  • Can you sketch the usual trajectory of my illness?

  • What do you hope this treatment will do for me?

  • How will it affect how I feel day to day?

  • What are the pros, cons, and alternatives?

  • What is it like to die of my disease, and how can medicine ease my symptoms?

  • Will you still be my doctor if I opt for strictly palliative care?

  • When do patients with my disease benefit most from hospice?

  Ask yourself:

  • What activities or capacities make my life worth living?

  • What are my greatest fears and regrets?

  • Given that time may be short, how do I want to spend it?

  —CHAPTER 5—

  House of Cards

  If Only Someone Had Warned Us • Recognizing Frailty • Avoiding the Hospital • Finding Allies in House Call Programs • Upgrading Advance Directives • Coping with Dementia • Shifting to Comfort Care • Enjoying Your Red Velvet Cake

  Although the Wind . . .

  Although the wind

  blows terribly here,

  the moonlight also leaks

  between the roof planks

  of this ruined house.

  —IZUMI SHIKIBU, translated by JANE HIRSHFIELD and MARIKO ARATANI

  You are likely to find this chapter helpful if you recognize yourself, or someone you care for, in some of the following statements. Because many frail people have some dementia and are no longer making their own medical decisions, I am addressing this chapter not only
to people in this stage, but to their caregivers.

  • You have (or someone you love has) “the dwindles”: zest for living is melting away, along with appetite, energy, and investment in relationships.

  • It takes you more than twenty seconds to rise from a chair, walk ten feet at a normal pace, turn around, walk back, and sit down. (This alone is a classic indicator of frailty: try it with a timer.)

  • You’ve lost ten pounds, or 10 percent of body weight, within the past year.

  • You can’t walk half a mile unaided, unscrew a jar, or pick up a dining room chair.

  • To get up, you push up with both hands.

  • You fall frequently, have “graduated” to a walker or a wheelchair, or use tabletops and counters for balance.

  • You spend ten hours or more a day sleeping.

  • You need help from hired caregivers, or you live in a nursing home, in assisted living, or with relatives.

  • You’ve gone to the emergency room at least once in the past year, and come back worse, not better.

  • You have progressed from forgetting names to forgetting the way home.

  IF ONLY SOMEONE HAD WARNED US

  Daniel Hoefer, MD, is the chief medical director for hospice, outpatient palliative care, and other serious illness programs for the Sharp Rees-Stealy Health System, a huge nonprofit HMO in San Diego. He sometimes tells his older patients to imagine their bodies as bank accounts. From the twenties through the late forties, he says, these physiological accounts overflow with energy and resilience. With all that vitality to draw on, people recover quickly and well from accidents, illnesses, and surgeries.

  But the energy storehouse of the human body is finite. From late middle age to advanced old age, we draw down our reserves. The immune system weakens, degenerative diseases afflict vital organs, muscles wither, nerves die off, and recovery from any blow takes longer. In time, the bank account runs out. Then any trauma—a fall, an accident, even a well-intentioned but stressful medical procedure—can have disastrous consequences.

  Take, for instance, what happened to Daniel’s father.

  * * *

  Rick Hoefer was a navy veteran and retired airline pilot who, as a young man, loved to play the clarinet and ride motorcycles. He lived with his wife, Marie, in Mission Viejo, a tree-lined suburb in Orange County about two hours’ drive from Daniel’s home in San Diego. The Hoefers had lived on the same street for forty years. It was a place where neighbors looked out for each other.

  Rick celebrated his eightieth birthday with his mind still clear. He socialized with his four grown children and loved to watch his grandchildren play in his pool. But he was coping with general age-related decline, compounded by three other serious coexisting health conditions: diabetes, heart disease, and a low-red-blood-cell problem. He slept ten to twelve hours a day. He didn’t go out much and he used a walker to shuffle from room to room.

  He was, as Daniel put it, “toting along, doing okay,” living quasi-independently with help from his wife and neighbors and sporadic check-ins from Daniel and his three siblings. Then, when Rick was eighty-three, Daniel noticed that his father’s ankles were swollen with fluid, often a sign of heart trouble. A cardiologist discovered that Rick’s aortic valve was narrowed, limiting his heart’s ability to pump effectively. The doctor recommended an innovative procedure known as a TAVR (trans aortic valve replacement). A TAVR involves floating an artificial valve down an artery and popping it into place remotely, without cutting into the chest. It is often suggested for people too old and frail to withstand classic open-heart surgery.

  Daniel Hoefer had spent decades caring for frail older people. He worried that his father didn’t have the reserves to bounce back from a TAVR. Looked at one by one, each of his father’s health problems seemed manageable. But in combination, they were more troubling.

  In a talk he gives to other doctors, entitled “If Only Someone Had Warned Us,” Hoefer reminds his fellow doctors of the many studies showing that frail patients are more likely to suffer complications, to stay in the hospital longer, and to be discharged to skilled nursing after surgery rather than returned home.

  Even for the young and robust, hospitals can be not only uncomfortable, but dangerous. More than a quarter of a million Americans die annually from hospital errors, such as hospital-acquired infections and medication mix-ups. Such mistakes are the nation’s third leading cause of death, and frail people are less likely to survive them. The frail are also more vulnerable to ordinary hospital stresses, like noise, unhealthy food, nighttime interruptions for the taking of vital signs, and long periods of inactivity.

  Thanks to recent reforms, hospitals and surgeons are carefully tracked and rated harshly by government agencies if their patients fall in the hospital, don’t survive for thirty days after surgery, pick up an infection, or are rehospitalized within thirty days of release. But nobody tracks whether those same patients lose their memories or their ability to walk, or have to move permanently to a nursing home after a hospital stay. Few, outside the family, will even know.

  Which explains why Daniel’s concern was so simple. His father’s heart might function better after the procedure. But the human being containing the heart might function worse.

  Daniel sent his father medical studies and peppered him with questions. Had the cardiologist discussed surgical risks “in the context of your frailty”? Under the best of circumstances, the TAVR carried a 14 percent chance of a serious complication, such as a stroke, heart attack, severe bleeding, or kidney damage. Rick’s doctor did in fact discuss those risks, but he didn’t foresee the possibility of catastrophic, global, mental, or physical decline.

  Rick thanked his son for his concerns. He and his cardiologist settled on a less invasive outpatient procedure, called a “balloon valvuloplasty,” to stretch open his stiff aortic valve.

  * * *

  In a hospital cardiac catheterization lab, doctors floated a soft thin tube down a blood vessel to Rick’s heart and then inflated a balloon to widen the valve and improve blood flow. Rick didn’t spend a single night in the hospital. His heart pumped more efficiently and the extra fluid came off his legs like magic. According to the standards by which surgeons, hospitals, and government agencies judge success, the procedure was a success.

  But not for Rick. Everything Daniel feared came true.

  It wasn’t a heart attack, stroke, or a medical error that undid his father. It wasn’t even a prolonged hospital stay. It was a cascade of inflammatory reactions to stress, affecting many bodily systems, including Rick’s brain. Before the valvuloplasty Rick had slept ten to twelve hours a day. Afterward, he slept sixteen, and then twenty. Beforehand, he’d been alert and involved with life. He came home from the procedure exhausted, disoriented, inattentive, and sometimes delirious. He stayed confused for three weeks.

  Rick Hoefer rarely thought with clarity again. He had hallucinations at night that frightened his wife.

  Older people lose a stunning 5 percent of their muscle mass each day they lie in bed. After three weeks of inactivity, Rick’s withered legs were little more than bone covered by paper-thin skin. He was too weak to sit up in a chair. Before, he’d trundled on his walker from room to room. Now it took two people to get him out of bed and into a wheelchair. He never walked again.

  Prior to the valvuloplasty, Daniel’s father could have been knocked over by a feather. The procedure turned out to be that feather. Daniel helped him enroll in hospice care, and Rick died peacefully in his sleep, in his own home, nine months later.

  “House of Cards” describes a state of health as precarious as a structure built of playing cards, and it is common in people in their nineties or in the mid to later stages of dementia. When they take a “great fall,” it’s unlikely that all the king’s horses and all the king’s men will ever put them back together again. Counterintuitive as it seems, protection from inappropriate forms of medicine can now be at least as important as access to the care that help
s most—the majority of which will be gentle and, if possible, delivered at home. Good medical care now includes finding a physician house call service, shifting to a focus on comfort, upgrading advance directives, thinking through a pathway to a peaceful death, and doing everything possible to reduce the risk of a traumatic hospital stay or emergency room visit. The most realistic goal now may simply be this: to not make a bad situation worse.

  This can be a confusing shift to navigate. The hope of improvement from a last-ditch medical technology is tantalizing. Ever since Eli Whitney invented the cotton gin, our culture has nourished the illusion that technological advances will soon usher in a utopia. But in the words of grief counselor Meghan Devine, “Some things in life cannot be fixed. They can only be carried.”

  Most people in the House of Cards have “the dwindles” or are on a looping or stair step trajectory of final decline. About a quarter of Americans become frail in their seventies. By the age of eighty-one, about 40 percent of us are frail. Very fit and resilient people, about a quarter of the aging population, will reach the end of their lives having spent only a few weeks or months being frail.

  RECOGNIZING FRAILTY

  It’s important to recognize frailty as a distinct health stage, because medical approaches that helped earlier can now harm. Now is the time to eliminate medical risks, to lower one’s expectations of medicine, and to get clear on what “living well” means as life is slowly winding down. If you, or someone you care for, is still on the conveyor belt of fragmented, crisis-focused medical care, with a focus on prolonging life rather than preserving function and relieving suffering, it’s wise to find a way off.