The Art of Dying Well

by Katy Butler

  I had only felt its premonition.

  And there was no reason for it.

  It didn’t obliterate consciousness;

  the past, which I carried, was there,

  together with my grief.

  And it was suddenly included,

  was a necessary part of the whole.

  As if a voice were repeating:

  “You can stop worrying now;

  everything happened just as it had to.

  You did what was assigned to you,

  and you are not required anymore

  to think of what happened long ago.”

  The peace I felt was a closing of accounts

  and was connected with the thought of death.

  The happiness on this side was

  like an announcement of the other side.

  I realized that this was an undeserved gift

  and I could not grasp by what grace

  it was bestowed on me.

  —CZESLAW MILOSZ, written not long before his death at the age of ninety-three

  You may find this chapter helpful if your death is six months to a year away. It is directed toward those still making their own medical decisions, and to the people who will care for them. You are in this health stage if you recognize yourself in some of the following statements:

  • If asked, your doctors would say that they wouldn’t be surprised if you died within a year.

  • You’ve lost 10 percent or more of your body weight in the past six months.

  • You have a terminal diagnosis and doctors say your illness is “advanced” or is reaching its “end stages.”

  • Cancer has returned after two or more rounds of treatment, you have decided not to undergo more, or a doctor has said “there’s nothing more we can do for you.”

  • A friend, family member, or doctor has suggested hospice.

  • You’ve refused dialysis, a defibrillator, or other life-prolonging technology. Alternatively, you want to stop some forms of treatment.

  • You say or think things like “Why am I still alive?” “No more hospitals,” or “I’m ready for God to take me.”

  • You feel life is no longer worth living. This is a highly individual judgment: some people enjoy life with health conditions that others can’t abide.

  • If you haven’t already, you feel the urge to reconcile old conflicts, forgive people who’ve hurt you, and otherwise make peace.

  • If you haven’t already, you deepen your interest in spiritual questions, reconnect with your old religious tradition, or explore a new path.

  • If you haven’t done so earlier, you begin to make funeral plans, give away clothes, or throw out old papers so you don’t leave a mess for your kids.

  MAKING GOOD USE OF THE TIME YOU HAVE LEFT

  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 s
upposedly ‘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.

  FINDING ALLIES IN HOSPICE

  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 h
our 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.