by Katy Butler
Only people with cancer qualify for hospice.
Reality: It is still harder than it should be to qualify, but it may be easier than you think. Two doctors, usually a personal physician and the hospice director, must sign a certificate saying they expect you to die within six months if your disease follows its normal course.
Twelve conditions automatically qualify, including stage four cancers, advanced heart failure, HIV-AIDS, kidney failure, liver failure, lung failure (COPD), ALS, and other rapidly fatal neurological diseases. Unfortunately, the list doesn’t include dementia or the slow fade that nurses call “the dwindles,” which aren’t covered until their final stages. Formerly, people in their final declines were admitted under a vague, catch-all diagnosis called “failure to thrive.” But Medicare removed it from the list after a 2013 Washington Post article exposed for-profit hospice chains that used it to aggressively enroll people who lived more than six months.
If a hospice rejects you, forget it.
Reality: If you’re turned down by one hospice, ask why, and apply again as soon as health conditions worsen. Admission standards vary, and you may find one hospice more flexible than another. Molly Bourne, MD, the former medical director of Hospice by the Bay in Larkspur, California, enrolled about half of her patients on “a judgment call,” after she documented accelerating decline. “They didn’t meet the strict criteria, but I could tell you they were going to die soon,” she said.
“Let’s say someone has Alzheimer’s but they’re still walking and talking and therefore don’t meet Medicare’s standard criteria,” said Dr. Bourne. “But they’ve been hospitalized three times in the past year with pneumonia, have lost five pounds in the last two months, and have gone from feeding themselves to not knowing how to use a spoon in the past three months. I can make the argument that this person is not going to be able to eat very soon, and they’re going to be dead within six months. And I can tell you, I’m usually right.”
Families should keep a detailed diary. “Really get the story straight before meeting with the [hospice] physician,” said Dr. Bourne. “Families want to look optimistic, but they should remember how the patient was six months ago. Caregivers don’t give themselves credit for all the stuff they’re doing. You’re saying she dresses herself, but you’re the one picking out the clothes and making sure she doesn’t fall, and you’re not calculating that as needing assistance.”
You are most likely to be admitted when you or your caregivers can document rapid loss of weight, muscle mass, and interest in food; growing fatigue and hours spent napping; repeated hospitalizations without improvement; and escalating difficulties with feeding, getting out of a chair, speaking, swallowing, walking, sitting up, smiling, or recognizing a relative.
NEXT STEPS
If you are nervous about hospice, I suggest beginning with an “informational meeting” or an “evaluation intake appointment.” Think of yourself as conducting research, and separate that from your decision-making. If you like going online, you can compare local hospice ratings at the “Hospice Compare” page of Medicare’s website. Ask around about friends’ experiences, phone at least three hospices, and observe how you feel during the phone calls. Did you get the information you needed? Were you rushed or listened to? It won’t make you die any faster to explore what hospice has to offer. You may even, like Mary Jane Denzer, feel better and live longer.
Are you still hoping to benefit from curative medicine, or reluctant to say goodbye to doctors who have helped you through difficult times? That’s fine. Hospice won’t cover their services, but you can pay out of pocket, or forgo hospice and get support from a physician house call program, or an outpatient palliative care or advanced illness management program—if you can find one.
If you forgo hospice, and a hospital continues to be your medical option of last resort, accept the fact that this may very well be the place where you die. You will face a different set of challenges to a peaceful and meaningful death; the next chapter will discuss how to bring a sense of the sacred into circumstances there.
But beware: dying in a hospital can be traumatic to the dying and to their survivors. Avoid it if you can. Survivors of people who die in an ICU suffer higher rates of depression, post-traumatic stress, and prolonged, complicated grieving. In the words of Anna Reisman, director of the Humanities in Medicine program at Yale School of Medicine, “[It is a] bizarre fact that most hospital deaths are handled by the youngest and least-experienced doctors.” Saving lives is a hospital’s specialty. Supporting a good death rarely is.
SETTLING YOUR AFFAIRS
What matters most to people given the strange gift of knowing that death is on its way? Emergency medical technician Matthew O’Reilly of Long Island has attended many people dying by the side of the highway after fatal car accidents, trapped in mangled automobiles. In a memorable TED talk, he said that he’d decided early on in his career it was “not my place to comfort the dying with my lies.” When gravely injured people ask him for the truth, he tells them they’re dying. Their eyes, he says, almost universally reflect calm and acceptance. But most have three pieces of unfinished business. They have regrets and want to be forgiven. They fear they’ll be forgotten and hope they’ll be remembered. And they want to know that their lives had meaning.
Ask yourself: What stands in the way, right now, of your dying in peace? What do you regret? What do you fear? What does a “good death” mean to you? Do you want to know how people with your particular illness tend to die, and what can be done to ease your symptoms? Are there certain friends and relatives whom you don’t want to see? What might help your survivors feel at ease after you’re gone?
Your to-do list may be as practical as deciding which family member will get a favorite vase, and putting the name on the bottom of it. It may be as creative as writing or talking about what you contributed during your precious human life. And it may be as intimate as talking about your fears, expressing gratitude and love, asking for and granting forgiveness, and saying goodbye.
Here are some examples of what others have done when they sensed, or were told, that they were approaching the end of life. Broadly speaking, these tasks can be sorted into three categories: arranging practicalities; telling your story; and completing the interpersonal work of life’s end.
Practicalities. After he was diagnosed with advanced cancer, rancher Jim Modini and his wife, Shirley, bequeathed their ranch to an environmental group and made sure that loving, competent caregivers were in place to care for Shirley, who had dementia, after Jim was gone.
Telling Your Story. Jane Sidwell’s father, Clarence Welgos, was diagnosed with esophageal cancer when he was seventy-two. He’d been a radioman on battleships in the Pacific Ocean during the Second World War. In the extensive diary he kept during those years, he referred frequently to the “horrors” he’d lived through, but he never talked about them to his family. After his diagnosis, he took out his war uniform and reviewed his World War II scrapbook, diary, and photos. He also sought out another veteran and together they held long conversations about their war experiences. He spent months creating an annotated map of the Pacific Ocean, charting the courses of the battleships he’d served on and naming all his commanders and the major battles he’d lived through. The map still hangs in his widow’s den. It is one of the ways that he will be remembered.
Saying Goodbye. A year before he died of cirrhosis of the liver at the age of seventy-two (caused by medications to treat the effects of a war injury), Jack Dempsey, a retired teacher who’d recently been widowed, moved from Kentucky to a small town in North Dakota to be near his daughter Jackie. As he and Jackie, who was in her forties, drove northward with his things, he asked her to detour through southern Illinois, where he’d been raised. They stopped in little towns where he’d grown up and paid visits to long-lost cousins, uncles, and aunts. “It was heartbreakingly sad yet joyful to see how he was welcomed with open arms by all of these, to me, seemingly ancient relatives,”
Jackie remembers. Jack visited his father’s grave, and tried, without success, to find the graves of his mother and his baby sister in a vast, unattended cemetery. “He was saying hello but he was also saying goodbye. I didn’t see that then,” Jackie said, “but I see it in retrospect.”
Six months later, her father weakened dramatically and was admitted to hospice. Jackie and her husband moved her father into their house in Minot, North Dakota, where his hospital bed had a view of the river Souris. For months, as he grew steadily weaker and more confused, Jack spent his days looking out and marveling at the river and the colors of the trees and the sky. One day, as Jackie was sitting by his bedside holding his hand, he looked toward the river and said, “It’s so far over that lake. I’m not sure I can make it.”
“Where are you going, Dad?” she asked him.
“I have to go home. I have to get over that lake but I don’t think I can make it.”
“I’ll help you,” she said. “I will help you get to the other side of the lake.” He died of pneumonia a week later.
CHOOSING THE TIME OF DEATH
More than 58 million Americans—those living on the West Coast, or in Hawaii, Montana, Oregon, Vermont, or the District of Columbia—may now legally obtain death-hastening prescriptions when they are terminally ill. Until recently, this practice was criminalized in most developed countries, and the Hippocratic Oath forbids it. But it isn’t new: throughout history, some medical professionals have quietly hastened death when they believed that their moral obligation to relieve suffering overrode a blanket duty to prolong life.
Among them is one of the most admired people in western medical history: the microbiologist Louis Pasteur, the father of the germ theory of disease, the inventor of pasteurization, and the developer of inoculations for rabies. In the mid-1880s, at the Hotel Dieu, a famous Parisian hospital, Pasteur treated five Russian farmers, all of whom had been bitten by the same rabid wolf and were dying horrible, protracted deaths. When they did not respond to Pasteur’s new serum, the farmers pleaded to be put out of their misery.
Pasteur conferred with the hospital’s head pharmacist, who compounded a lethal prescription, which the farmers took of their own volition. They died almost immediately. Pasteur’s actions may have been merciful, but they were devastating to all who observed them: a silence fell over the ward, wrote the novelist Léon Daudet, who was there studying medicine. He and his fellow doctors, he wrote, “cried tears of horror. We were at the end of our nerves, annihilated.”
More than a century later, 12 million people watched a YouTube video made in 2014 by Brittany Maynard, a beautiful young California teacher who wanted to cut short the final ravages of her brain cancer but could not do so legally in her home state. She moved to Oregon, which has allowed physician-assisted dying since 1997, and took legally prescribed lethal drugs there.
Planned, voluntarily timed deaths like hers can be as calm, poignant, and sacred as any other. Brittany’s husband and stepfather were with her as she died, while her mother read aloud her daughter’s favorite poem, “The Summer Day” by Mary Oliver. It includes the famous lines,
Doesn’t everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?
Maynard’s video created a groundswell of support for expanding the right to time one’s death, which was legalized two years later in California. This pathway to the end of life is heavily regulated wherever it is legal, and it is available only to people certified to be of sound mind and within six months of dying. Health systems may opt out of cooperating, and many, especially Catholic ones, do. It is of no use to the demented, or to people with physical limitations that prevent them from taking a drug without practical help. (Those with such conditions must decide early in the disease process, and sometimes cannot qualify at all.) Others hasten death informally by fasting, known as voluntary stopping of eating and drinking, or VSED. The practice was familiar in classical Greece, where the stoic Greek philosopher Cleanthes stopped eating for a few days at his doctor’s suggestion to heal an ulcer, decided not to start up again, and brought on his own death at the age of ninety-nine. Dying occurs relatively painlessly by dehydration, as long as nothing at all is consumed, and typically takes ten to fourteen days. This ancient practice is currently allowed in every state: there is no law requiring people to eat or to be force-fed.
Alan Alberts of Bellingham, Washington, a computer consultant, was seventy-five when he was diagnosed with the early stages of Alzheimer’s disease in 2011. He’d watched his mother die an agonizingly slow death on a locked “memory” unit. In 2013, while he could still make his own medical decisions, he chose to stop eating and drinking, with the support of his wife, Phyllis Shacter. As Phyllis described in her 2017 book Choosing to Die, the couple arranged for supportive caregivers and consulted a lawyer and a sympathetic doctor. Phyllis created an altar at home where candles burned continuously for the eight days it took Alan to die.
In midweek, a social worker from the county’s elder abuse department came to the house, most likely alerted by a former paid caregiver who was uncomfortable with what the couple was doing. Phyllis pulled out her well-organized legal documents to demonstrate that Alan was following his own wishes and had the right to do so. The social worker was satisfied, and Alan continued to a quiet death.
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Others hasten death outside the law, sometimes with the help of a volunteer group called the Final Exit Network. Sometimes family and friends are informed and cooperative, and the dying hold a farewell party or otherwise say goodbye. A dear man whom I knew through a meditation group, and whom I shall call Phillip, was eighty-nine when he ended his life this way, with the knowledge of his wife, brother, and closest friends. A former air force pilot, athlete, and inspired teacher, he was miserable, losing weight rapidly, bent over a walker, and increasingly isolated by deafness and cognitive impairment that had worsened dramatically after a heart valve replacement surgery. After spending his last week saying goodbye to those closest to him, he ate applesauce to combat nausea and took a hundred hoarded, legally prescribed Seconal pills, following directions in the book Final Exit. His brother, who was with him, left immediately afterward, and Phillip’s wife, Aida, returned to her unconscious husband’s bedside for the five hours it took him to die, singing him songs they’d loved, like “Old Devil Moon” and “My One and Only Love.”
The couple had not consulted a lawyer or doctor or planned for the aftermath, and after Phillip died, Aida called 911 to have her husband pronounced dead. The local coroner and sheriff’s deputies converged on the house and questioned her for three and a half hours. She pretended she’d known nothing of her husband’s plans, and was silent about the involvement of his brother. (Promoting or assisting a suicide is a crime in California, as it is in most states.) “They wanted to know what he’d eaten that morning, and what he’d talked about,” she said. “Why had I not known? Why was he sleeping in the guest room?” Aida continued to profess ignorance. “I didn’t know I could lie like this!” she said. “It was an awful feeling, but I had to make sense and protect his brother.”
Some people in poor health try to end their lives on their own, without involving family. They have often fallen through cracks in the health system: sick enough to be miserable, not sick enough for hospice, and without practical support or home-based palliative care. Dying this way is not illegal, but having been privy to two botched attempts, I don’t recommend it. The people I knew were discovered and resuscitated. Their advance directives were disregarded, they were placed in intensive care units, and they lost the right to make their own medical decisions until they were deemed to no longer be depressed or a threat to themselves. If you are considering this path, please speak to someone about your despair and your plans. Taking one’s life without the knowledge and acceptance of family or friends often leaves trauma in its wake. A palliative care or hospice team may find ways to make th
ings better. The National Suicide Prevention hotline number is 1-800-273-8255. Please call it.
LOVING, THANKING, AND FORGIVING
Hospice nurses like Redwing Keyssar often say that people die as they’ve lived. Whether you are a caregiver or a dying person, please don’t use the suggestions in this book as standards to force yourself or others to meet. Some people get ready for death watching a Red Sox game and eating pizza.
Nevertheless, many people intuitively complete some version of five emotional tasks of the end of life, popularized by the pioneering hospice doctor Ira Byock in these simple words: “Please forgive me. I forgive you. Thank you. I love you. Goodbye.” This important work doesn’t have to be done out loud. Nor does it even require openly acknowledging that you are, or someone you love is, approaching the end of life.
After my father had his first major stroke, I began writing him what I later called “legacy letters.” I thanked him for reading me The Story of Babar: The Little Elephant when I was tiny, and for teaching me to read and to swim. We spent a year exchanging letters and photographs this way, recalling the many happy hours we’d spent during my early childhood. I didn’t have to say aloud that I knew he was approaching the end of his life, or that we were indirectly healing the rifts of my aggrieved adolescence and beyond, but we tacitly understood. He closed one of his last letters to me with, “You must think of this often, because it will sustain you.” It still does.
Do not underestimate the power of your emotional legacy, expressed in even a small, last-minute exchange within a difficult relationship. Kathy Duby was raised on the East Coast by a violent alcoholic mother. Kathy had no memory of ever hearing her mother say “I love you.” Kathy eventually moved to California, and decades went by. The two women’s relationship continued to be marked by bitterness, distrust, and estrangement.
