When Mary Jane Denzer was diagnosed with pancreatic cancer, her first reaction was to fight it. She was eighty-two and full of life. Aside from being slightly nauseous after eating a meal, she felt completely healthy. She ran her own dress shop in White Plains, New York, and walked several long blocks to work every day, usually in high-heeled boots. She spent her days scurrying between clothes racks and dressing rooms filled with customers. She loved her life, her four adult children, her dog, and her grandchildren. Twice a year she went to Europe to see the designer shows and order new clothes for her store. She wasn’t ready for any of it to end.
Soon after her diagnosis, she saw an oncologist at Manhattan’s Memorial Sloan-Kettering, one of the nation’s preeminent cancer research and treatment centers. The doctor was honest. Surgery wasn’t an option. The tumor, originating in Mary Jane’s pancreas, had wrapped around a huge artery branching from her aorta, the body’s largest blood vessel. Trying to surgically remove the tumor, the oncologist said, might rupture the artery, cause uncontrollable bleeding, and kill her.
That didn’t mean that Sloan-Kettering had nothing for her. The oncologist offered her three courses of treatment. The harshest chemotherapy might give Mary Jane more time, or it might kill her quicker than her cancer. A less grueling chemo might temporarily keep death at bay, but it would make her hair fall out. The mildest chemo might preserve her hair, but it would give her no more than an extra month. No matter what she chose, the oncologist said, Mary Jane was unlikely to live more than six months.
The oncologist raised another possibility: hospice.
Mary Jane said no. She wanted to “fight.” She opted for the mildest chemo.
For three weeks straight, she went to a beautifully appointed suburban branch of the cancer center and lay down in a recliner while the drug was infused into her veins. When given to patients with fatal cancers, this approach is sometimes called “palliative chemotherapy.”
The stated goal of palliative chemotherapy is to relieve suffering and improve the quality of the patient’s remaining life, not to root out the disease, which doctors know is impossible. But the phrase makes some palliative care doctors bristle, because it can be a contradiction in terms. In the wrong circumstances, palliative chemo can be anything but palliative. Instead of soothing symptoms, it can make people feel sicker, and make their deaths more difficult, without increasing their survival times at all.
Mary Jane didn’t know this. And even though nobody at the cancer center misled her, who can blame her? The center where she was being treated was one of the best known in the nation. Its recent million-dollar advertising campaign had featured full-page ads in national magazines showing healthy-looking, apparently victorious patients holding up signs saying things like “Cancer, NICE TRY.”
After three weeks of chemotherapy, some of Mary Jane’s hair fell out. Her lungs filled with fluid. She had trouble breathing. She was admitted to a hospital near her home, where she picked up Clostridium difficile, a devastating, antibiotic-resistant gut infection. Rampant in American hospitals, C. diff is spread by the overuse of antibiotics and the careless washing of bedding, equipment, and doctors’ and nurses’ hands. It causes excruciating and sometimes fatal diarrhea, especially in the elderly and in those whose immune systems are already compromised by illness or chemotherapy.
By the time Mary Jane left the hospital, the triple blow of cancer, chemotherapy, and C. diff had almost killed her. She weighed a hundred pounds and looked skeletal. She was, as she told me, “knocked for a loop.” Deciding she was on the brink of death, Mary Jane told her doctor to stop chemo. “It was only going to give me another month, and it made me so much sicker it wasn’t worth it,” she said matter-of-factly. “It’s worth it if you’re going to get better. But it’s not worth it if you’re not.”
One of her four children, her daughter Cathryn Ramin, helped Mary Jane enroll in a local hospice program. Money was not a problem, and the family made arrangements for a private agency to provide hands-on caregiving. Everyone braced for what they thought would be the quick arrival of the inevitable. That wasn’t the expectation of Kelly, the lead hospice nurse.
In Kelly’s opinion, Mary Jane’s life wasn’t over just because she had stopped fighting death. Once the side effects of the chemo and C. diff receded and Mary Jane’s pain was controlled with small doses of morphine, she returned, with Kelly’s encouragement, to doing what she loved. That meant seeing her friends, children, and grandchildren; pampering her dog; buying clothes for herself and her store; and continuing to walk to work and run her dress shop—all while “on hospice.”
“My first reaction was, oh my gosh, I really am dying,” Mary Jane told me seven months after she enrolled in hospice. “But you’re not really dying yet. You can make good use of the time you have left. You just don’t know how long it’s going to be.”
Several times a week, her daughter Cathryn would take the train from New York City to join her mother for dinner in White Plains. “I’d arrive around six o’clock,” Cathryn said. “A lot of times the apartment was dead dark, nobody was there, and nothing had been planned for dinner. I’d come up to visit the sick and dying, and the supposedly ‘sick and dying’ was still at work!”
Some people think hospices provide little medical care beyond morphine in the final hours of life. That wasn’t the case for Mary Jane. It’s true that when she shifted to hospice, she had to say goodbye to her doctors at the cancer center and hand over all her medical care to the hospice team. It’s also true that her tumors kept growing until they distended her stomach. Her pain increased, along with the morphine doses she used to manage it.
But she was healthier and happier, and she probably lived longer than she would have if she’d continued with so-called palliative chemotherapy, or doubled down on a harsher medical assault, the one that many stage four cancer patients and their doctors wage against death until a few weeks before the end.
Hospice did not mean medical neglect. When her tumors interfered with her pancreas’s ability to regulate her blood sugar, a hospice nurse put her on a stringent diet to manage her resulting diabetes, and she felt better. When the tumors spread to her liver, a hospice doctor sent her to the hospital, where stents were inserted to open her blocked bile ducts and relieve her jaundice. When her abdomen swelled with fluids and pressed on her lungs, causing breathlessness, she returned to the hospital, again as an outpatient, to have the fluid drained. She breathed more easily. As her pain increased, she graduated from morphine drops placed under the tongue to higher-dose tablets and finally to morphine delivered by intravenous pump. The hospice’s focus on the quality of her life had a strange side effect: it extended it.
Outfoxing all predictions, Mary Jane lived for a full year after engaging hospice. She had the time, comfort, freedom from pain, and mental clarity to arrange a reconciliatory lunch with an estranged former sister-in-law. She wrote her daughter Cathryn a beautiful letter thanking her for her love and caregiving. She bought expensive new boots even though she didn’t have time to wear them out. She kept going to work, although at increasingly reduced hours, until six weeks before her death. She died in her own home, with her family around her.
Preparing for death—practically, emotionally, and spiritually—tends to intensify when dying is between six months and a year away. Some people arrive at this crossroads unwillingly, when a doctor tells them that further treatment won’t buy them more time. Others arrive somewhat by choice when they say, one way or another, “No more.” Emotions, not only in the dying but in those who love them, often include ambivalence, anticipatory loss, and tenderness—and darker ones, like caregiver burnout, horror at the ravages of illness, fear, reluctance to let go, and impatience for it all to be over.
No matter how uncertain the hour of death may still be, take a breath. Death is on its way. This is the time to prepare for the difficult labor of dying, just as the final trimester of pregnancy signals the time to get everything in place for the hard work of giving birth.
This will not be an individual journey. Although we ultimately die alone, we will need the help of others until our last moments. A good death is easier for people with family members or a strong network of friends to provide practical support, and a hospice or palliative care team to educate caregivers and handle pain and other symptoms. When basic needs for comfort, connection, and pain control are met, dying people often have the breathing space to address what concerns them, emotionally and spiritually. That requires accepting the coming of death, and making practical plans.
If you want to die at home, I suggest you arrange an informational meeting with a hospice, even if you think you’re not sick enough yet. You should explore enrolling as soon as visiting a doctor becomes difficult, and any time you have uncontrolled pain. Hospice will usually be the most financially viable way to get the medical and practical care you need at home, with the best pain control, and the best preparations for a calm and peaceful death.
Hospices are widely misunderstood. It’s tragic that half of those who enroll do so only two weeks before death, when they could have benefited for far longer. Many families say afterward that they wished they’d contacted hospice earlier. To clear up common confusions, I’ve compiled a list of myths about hospice and the realities you will find instead.
A hospice is a building.
Reality: The first modern hospice—St. Christopher’s in London, founded in 1967—is indeed a residence for dying people. But in the United States, a “hospice” isn’t usually a brick-and-mortar building, but a package of coordinated services reimbursed by health insurance. Hospice teams provide emotional, practical, medical, and spiritual support to terminally ill people and their families and friends. Their doctors, nurses, chaplains, social workers, physical therapists, and other professionals make house calls to wherever their patients are, including private homes, nursing homes, and hospitals. Some hospices are branches of national for-profit chains; others are novice mom-and-pop businesses; still others are local community nonprofits with years of experience, and these are often, but not always, the best. There are some residential hospices in the United States, but they’re mostly funded by philanthropy, and therefore few and far between.
Hospice is bedside care for the last hours of life. To qualify, people must be a few days from death.
Reality: Medicare’s hospice benefit is available to anyone within six months of dying, and some private insurance covers up to a year. People who get hospice care early in their disease often continue to work, see friends, and do what matters to them. Paradoxically, their well-being often immediately improves once they get good pain management, and less stressful, better-coordinated, medical care at home.
Signing up for hospice is signing your death warrant.
Reality: It’s true that hospice patients must let go of their old doctors and give up cure-oriented treatments. But if a new treatment surfaces that you want to try, you can disenroll from hospice without penalty, get treated, and return when you want to. About 15 percent of people on hospice get healthy enough to disenroll, at least for a while. Saying the word “hospice” will not make anybody die faster.
Hospice is expensive.
Reality: Hospices provide, at no charge, hospital beds and supplies; nursing care in the home; medications for pain, breathlessness, and anxiety; doctors’ visits and twenty-four-hour phone consultations. Their social workers and chaplains support caregivers, help resolve family conflicts, and can help you create a plan for a peaceful death. There are no co-pays. However, there are gaps. You’ll have to pay out of pocket or do without treatments the hospice considers life-extending rather than palliative. If you’re in a nursing home (technically known as a “skilled nursing facility,” or SNF), you’ll have to choose: Medicare will not pay simultaneously for both hospice services and skilled nursing, because SNF stays are supposed to be for rehabilitation. People in this bind usually keep the SNF benefit, which covers more care, and pay for hospice or physician house call services out of pocket, or ask doctors to provide palliative care or comfort care. Then they transfer to hospice for the final days of active dying.
Hospice covers round-the-clock home care.
Reality: Not so—and this is a major shortcoming. Insurance reimbursements for hospices have declined, all provide fewer services than they used to, and more are run as businesses rather than as altruistic community organizations. Team members make house calls lasting up to an hour or so, but they rarely spend hours in the home. Hands-on bedside care, including bathing, diaper-changing, giving medication, and feeding, must be provided by friends, family, or aides paid out of pocket. Medicaid will provide home health aides to those with limited incomes and savings of $2,000 or less; a hospice “benefits coordinator” can help you with the application. Sometimes nonprofit hospices with strong community ties can steer you to charitable grants that cover some home care or a residential hospice.
When someone is actively dying and family members become afraid, they are often shocked to call the hospice and discover that no staff member will rush to the bedside. Teams are often stretched thin, the precise hour of death is always unpredictable, and most hospices do not consider it part of their mission to be present at the moment of death. At the very least, hospices should be honest about what they will and won’t do, and provide adequate reassurance to family members, along with a clear picture of what dying will be like. Look for a hospice with a staffing ratio of one nurse for every nine to fifteen patients: the lower the caseload, the greater the chance someone will come at short notice.
Hospices push morphine, addicting the dying and hastening their deaths.
Reality: Many previously held medical assumptions turn upside down when someone is dying, and this includes most of what you think you know about pain control and addiction. Thanks to the current addiction epidemic, we have learned to regard drugs like benzodiazepines, Valium, morphine, fentanyl, OxyContin, and methadone with deep suspicion. But for people on hospice, they can be godsends. Unaddressed pain and agitation are distressing to everyone, and can absorb all the attention of the person dying. (This is still the most common barrier to a peaceful death. )Hospice nurses are your best defense: they are more experienced than most doctors in skillful pain management.
The cautions surrounding opiates—that they’re addictive and sometimes life-threatening—are very relevant for young people who are not dying, but have little meaning for the terminally ill. Addiction is not an issue for the dying. Pain is. Morphine is usually self-administered, and the amount taken (via tablets, a patch, an infusion pump, or a squirt under the tongue) is controlled by the dying person or those caring for them. Those on morphine for months can tolerate extremely high doses. When you are dying, there is no shame in being dependent on a drug that will control your pain and give you the mental freedom to say an adequate goodbye.
Because so many people don’t enroll in hospice until a few days before death, family members sometimes mistakenly conclude that death was caused by a drug like morphine or fentanyl, rather than by the natural course of a fatal disease. Many people die under the influence of morphine, but very few die much faster because of it.
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.
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.
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.
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.
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 things better. The National Suicide Prevention hotline number is 1-800-273-8255. Please call it.
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.
When Kathy was in her forties, her mother, then in her seventies, developed breast cancer. The disease metastasized despite surgery, chemotherapy, and radiation. A little more than a week before her death, her mother was admitted to the hospital. Over the phone, she said to her daughter Kathy, “Don’t come. I don’t want to see you.” Kathy got on a plane on the advice of a friend who told her that if she didn’t fly back, she would regret it for the rest of her life.
Kathy walked into her mother’s hospital room. There she found a tiny figure curled up in a hospital bed—“shrunken, yellow, bald, bronzed by jaundice,” as she later described it in a poem. This was the mother she had feared for so long. The two women looked at each other in silence. Kathy’s mother said aloud, for the first time that Kathy could remember, “I love you. I’m sorry.” That was it.
Kathy replied, “I love you and I’m sorry.”
“Those few moments,” said Kathy, “cleared up a lifetime of misunderstanding each other.”
When you think of how you’d like your own death to go, I suggest you make plans for the basics—comfort, adequate help, and pain control—and then expand your horizons. One man dying of multiple sclerosis in a nursing home, who’d formerly worked as a forester, was gurneyed out into the woods by volunteer firefighters for a last view of his beloved trees. In Australia, paramedics have taken dying people to the beach for a few minutes to gaze at the ocean or to lick an ice cream cone, before delivering them to the hospital. One of my closest friends will never forget the look on her dying mother’s face when she cued up Frank Sinatra on her mother’s headphones.
Are there particular words you’d like to hear that might help you die in peace? Might you need reassurance, for instance, that a vulnerable family member will be taken care of? One agitated man, who’d made his living putting up holiday decorations on the Main Streets of several towns, died peacefully after his hospice nurse told him that the season was over and all the decorations were put away.
Coming together to help someone prepare for and experience a good death, just as our ancestors did, is a rite of passage worth reviving. Everyone benefits, as long as caregiving burdens are spread widely enough, because helping others makes people feel better about themselves. For those without substantial assets or Medicaid, most bedside care will be provided by friends, volunteers, and relatives, as has been done for centuries. The excellent handbook Share the Care shows ways to divvy up tasks so that people do what they’re good at, get satisfaction from it, and don’t burn out.
Share the Care suggests picking an organizer to convene a face-to-face meeting of everyone interested in helping out. At that meeting, those involved can parcel out tasks, including a hands-on point person who can live in the home or nearby; someone to coordinate volunteers, using an online calendar or a website like LotsaHelpingHands.org; and someone to match volunteers with the types of help they’re best at (shopping, running errands, bedside caregiving, or researching outside sources of help like public benefits and community groups). The most critical role to fill is that of a health care agent, if one hasn’t been chosen yet—someone to make sure that appropriate and wanted medical care is delivered (including pain management); that end-of-life paperwork is up to date; and that when the time comes, all unwanted or painful medical treatments are stopped.
Don’t turn down even the smallest offer of help. When my former dance teacher, Stephanie Moore, was diagnosed with ovarian cancer, her daughter and dozens of people she knew took care of her round the clock for five months. Tall and blond, and possessed of extraordinary energy, drive, and talent, Stephanie was divorced and lived alone and on a shoestring. But she was rich in social connections. When she was weakened by cancer, surgery, and chemotherapy, and unable to drive or shop, she drew on the deep “gratitude bank” she’d built over decades of teaching writing and dance classes, and in her membership in a recovery program. Whenever anybody said, “Let me know if you need anything!” Stephanie would whip out her calendar; she always had an answer.
Her daughter was there every day. Another well-organized woman with a full-time job handled the calendar of helpers online in the evenings. I used to bring a chicken dinner to share on Monday nights, while others took regular four-hour weekly shifts to keep her company. Because the commitments were shared and well organized, no single person was overwhelmed. Those who showed up were not necessarily those she expected; some close friends didn’t come much, while others who barely knew her drew deep satisfaction from being part of her support team.
My husband, Brian, drove Stephanie to her chemotherapy sessions and slept in a sleeping bag on the floor by her bed on the many nights when she was afraid to be alone. When she had trouble breathing in her last two months, he also paid for oxygen equipment that her health plan refused to provide.
Stephanie insisted until her last week that she was going to beat her cancer. She tried, unsuccessfully, to get the “maximum chemo,” which her doctors said would kill her. She was particular about how she wanted things done, and she refused the support of hospice until a couple of weeks before her death. She spent her last three days in a hospital because she became too agitated and delusional to be adequately cared for in her own home.
She was in her mid-fifties when she died, with many ambitions and yearnings unfulfilled—to publish a novel she’d written, and to once again be in a committed, loving relationship. Nothing about her dying was easy. Those who cared for her could not make her peaceful. But shortly before she entered the hospital, she invited Brian and some of her closest friends to help her plan her funeral. And after she died, everyone who helped her could look back with pride on the job they did.