There's a quiet, irreversible transformation happening in the way we die. Hospice was once viewed with suspicion as a New Age indulgence or fringe religious practice, but now nearly half of all Americans now die in hospice care, often at home. In Changing the Way We Die, (Viva Editions, 2013) Fran Smith and Sheila Himmel share real-world stories of patients, caregivers, researchers and the coporate giants that own the market in the first book to take a sweeping look at the landscape of hospice care. They also discuss the remarkable shift in attitudes and practices around dying, given that 97 percent of Americans say that they want to be better informed about end-of-life care. The following excerpt is from Chapter 1, "What Do You Want to Do With the Rest of Your Life?" and brings to light the positive possibilities of hospice care and palliative medicine.
“Oh no, he’s giving up. He’s just going to die.”
All Along, doctors differed on Rusty Hammer’s prognosis. One told his wife, Pamela, “If he lasts five years, he’ll be lucky.” Another kept reassuring Rusty, “You never know. You’re doing fine. Just get more rest.”
He did last five years, but Pamela will always wonder whether the treatment was worth the torment.
Rusty was diagnosed with acute myelogenous leukemia, a rare and aggressive blood cancer. By the time he died, on Monday, January 28, 2008, he had taken more than 250 medications, received more than 350 blood transfusions, had a stem cell transplant, and spent nearly 600 nights in six different hospitals. He developed severe diabetes and osteoporosis, heart and lung failure. He needed an oxygen tank for breathing and a shunt in his brain to relieve the pain. Visiting the doctor took all day, with the wheelchair, the drive, managing a hospital bed on the other end. It left them both exhausted, and hopeless that their family’s suffering would ever end.
But hospice care brought them comfort and calm. In the last six months of his life, Rusty enjoyed the company of family and friends. He explored his religious heritage. He wrote a book, and in a strange way he also became the author of his own experience—a person again, not a medical record number or an object to be handed from one specialist to another for yet another debilitating treatment. The hospice team listened to him. Pamela found herself becoming a better listener too.
This was not how Rusty thought of hospice when a friend first suggested it. He did not imagine an opportunity to reclaim his life, let alone do something new or grow. He thought of hospice as a place you go to die, and he was appalled.
Rusty’s fear is common, as is the desire not to die in a hospital. By better than 2-1, Americans consistently say they want to die at home, without pain, among the people they love. As they tell pollsters: no breathing tube down the throat, electrodes plastered to the chest, IV lines snaking from arms. In a March 2011 poll of 1,000 adults by the Regence Foundation and National Journal, 71 percent said it is more important to improve the quality of life of a seriously ill patient than to extend life through every medical intervention conceivable.
Hospice delivers on these wishes. It is the best medicine for dying patients and their families when quality of life, however a person defines that, is the goal. Nothing else in health care matches it for breadth of services or compassion. If you are sixty-five or over, Medicare pays. Medicaid does too, and many private insurance plans.
In medical literature, where just about every treatment, innovation, and guideline seem to stir controversy and confuse rather than clarify the best choices, there is no dispute about the benefits of hospice. And, in an economy where every expense is on the table, the cost-effectiveness of hospice cannot be ignored.
The rapid growth of hospice speaks to its appeal and to the depth of our collective desire for a better way of dying. The first hospice in the United States, in New Haven, Connecticut, began caring for patients in 1974. Four years later, fifty-nine hospice programs served patients (though only a handful in most cases). The 1981 directory of the fledgling National Hospice organization listed 464 hospices in operation and 353 trying to get off the ground. Just about all these groups ran on the sweat and dreams of volunteer nurses, clergy, doctors, and social workers. Today there are more than 5,000 programs. A cadre of end-of-life experts is developing ever more refined techniques to control pain and other symptoms. Medical schools do a better job of teaching students about the once unmentionable subject of dying. Fellowship programs train hundreds of young physicians a year in hospice care and palliative medicine.
Yet, even as hospice gains ground, the use of aggressive last-gasp medical interventions is increasing. From 2000 to 2009, hospice use among Medicare patients nearly doubled, to 42 percent. But more patients enrolled in hospice only after aggressive treatment in intensive care units in the final weeks and months of their lives. Nearly one in six patients was moved from one setting to another in the last three days—from home to a hospital, for instance, or from the hospital back to the nursing home. For too many patients, hospice was just another quick stop in a chaotic journey through a fragmented health care system.
The fear of death and the resistance of the medical profession prevent many of us from embracing the opportunities hospice affords to live the end of our lives in a way we find meaningful and to have the kind of death we say we want. Medicare and many insurance plans cover hospice care for people with a life expectancy of six months, and if you happen to live longer, you can remain on hospice or leave until your condition worsens. But the median length of service is just nineteen days. Thirty-six percent of hospice patients die within a week of enrollment. Rabbi Mychal Springer, director of the Center for Pastoral Education at the Jewish Theological Seminary in New York, trains seminary students of diverse faiths to provide pastoral care in hospices, and she says her students are always shocked to discover that, by the time they are called in, many patients can no longer communicate or seem to register their presence.
Waiting until the very end to choose hospice, clinging to the sliver of hope that the next new drug or procedure will bring the miracle, diminishes the possibility of dying well. It robs patients of the time and energy to hug a loved one goodbye or to sit in the sunshine of the garden or to stroke the soft fur of a beloved pet or to tie up loose ends financially, emotionally, and spiritually. “If you sign up for hospice and you have twenty-four to forty-eight hours left to live, you’re not up for very much,’’ Springer said, perhaps stating the obvious. “It’s such a waste.’’
The Hammers would take a different path.
Rusty Hammer thought hospice meant giving up, and he was not a quitter. All his life, he took action, blazed trails. At the age of eighteen, he had been voted onto the city council in Campbell, California, becoming the youngest elected official in United States history. Now Campbell is just another dot on the map of Silicon Valley, but back then it was a cannery town surrounded by orchards. His election was the biggest thing to happen there since the invention of fruit cocktail, to which Campbell laid a claim. While on the council, Rusty attended the University of Santa Clara full time and worked at Steve’s Pharmacy in downtown Campbell. In 1975, he became the nation’s youngest mayor ever elected, an accomplishment covered by such wide-ranging news outlets as Seventeen and the London Times. The National Enquirer headlined the story, “youngest Mayor is only 22.” For once, the tabloid downplayed the story; Hammer was twenty-one.
As mayor, Rusty worked with a vocal advocate for disabled access, a woman who had been paralyzed by polio. She liked the earnest young man presiding at long, contentious meetings. She went home and told her daughter, Pamela, “oh, I’ve met this wonderful man.” Nine months later, Rusty and Pamela were married.
Pamela gave birth to twins and Rusty went on to a career as a corporate and nonprofit executive. As years went by, they moved to Florida, to Sacramento, and then to Los Angeles, where he ran the Chamber of Commerce. When the twins, Gerald and Jennifer, were about to graduate from college and Rusty was turning fifty, his back started hurting. The Hammers and their doctors thought it was from an auto accident, but the pain persisted and a PET scan lit up a mass of tumors. The orthopedic surgeon who had ordered the scan said, “I think we have bigger issues than your back.”
Rusty had a surgical biopsy. Diagnosed with acute myelogenous leukemia, with a 20 percent chance of living five years, he was hospitalized in preparation for a bone marrow transplant. After two weeks of high-dose chemotherapy to clear up the cancer as much as possible, his white blood cell count dropped dangerously low and his stomach became infected. Then he developed symptoms of congestive heart failure. The bone marrow transplant was postponed, and it was six weeks before he was allowed to go home, for five days.
“All I wanted to do was go home for good,” he later wrote. “I kept going back to the hospital over and over again.”
Instead of the bone marrow transplant, Rusty’s doctor decided to do a less painful stem cell transplant. He was hospitalized for four months. Then came a cascade of complications, from diabetes induced by the steroids he was taking, to pneumonia, to a staph infection from a catheter.
When he was strong enough, the Hammers moved back to Silicon Valley to be closer to friends and family. Two or three times a week, Pamela got Rusty dressed and into the car for the half-hour drive to oncology appointments at Stanford Hospital. There they had to find a room supplied with oxygen equipment and wait, usually hours. Another season went by, and Pamela said, “Rusty, what do you want to do?” He wanted to keep up the treatments. But Pamela was worn to the bone, he could see, and he felt responsible. “My illness was sapping Pamela’s life,” he later wrote.
Although Hospice of the Valley had been around almost thirty years—like Rusty, a local institution—he knew almost nothing about it. But, four and a half years after his diagnosis, he agreed to let a hospice worker come to the house—just to explain the services. He learned that Hospice of the Valley was not a building to house patients but a service that would come to him.
The social worker told him that, even in the final stages of a terminal illness, there are choices. Is there someone you need to mend fences with? Do you want to travel? See friends? Keep your family close? Is there work you want to finish? The young man distilled the essence for Rusty: “What do you want to do with the rest of your life?”
Some friends argued it was too soon. A relative, horrified, protested to Pamela, “oh no, he’s giving up. He’s just going to die.” But the social worker’s list of choices took up residence in Rusty’s mind. He wanted to spend time with Pamela, the twins, and his lifelong friends. He might even have time to write the book he’d been thinking about, to help other people deal with cancer. Rusty and Pamela had long talks: What did he want to do with the rest of his life?
That question gets to the heart of what hospice is all about. It is much more than physical comfort care. Relieving agony is of course important, and hospices have pioneered techniques to ease pain, breathing difficulties, agitation, and other distressing symptoms. These methods and the broader emphasis on relieving suffering are finally finding their way into hospitals, through palliative medicine services, to the enormous benefit of sick people who are not necessarily about to die.
But hospice services extend well beyond the medical. Hospice offers counseling, spiritual support, and help with practical issues, from filling out tax forms to arranging a visit from an estranged child. St. Christopher’s Hospice in South East London, the first modern hospice and the lodestar for programs the world over, once allowed a circus owner determined to cheer up his dying father to bring a baby elephant to visit.
No hospice in America would go that far, but the ethic of expansive patient-driven care runs strong. Pets are often welcome to stop by inpatient hospices, and if a patient at home is too sick to care for a pet, many hospices will send a volunteer to help. It is not unusual to find hospices offering aromatherapy, massage, art therapy, life reviews, and music therapy. All these can forge almost magical connections with a patient who seems beyond reach. One spring day in an inpatient hospice unit in California, a harpist played in the room of a moaning, thrashing woman with cancer. The tone, pitch, and rhythm of the instrument matched the sounds of the patient, and soon she quieted and drifted off to sleep.
Underlying these practices is the concept of “total pain,” a phrase coined by Cicely Saunders, the nurse-turned-social worker-turned-physician who founded St. Christopher’s in 1967. Hospice care is built around the idea that anguish at the end of life does not stem only, or even primarily, from the physical ravages of disease. “Bodies don’t suffer, people do,’’ said Charles F. von Gunten, editor in chief of the Journal of Palliative Medicine. “The emotional component, the practical issues, the spiritual dimension—that’s where the suffering is.’’
Another hallmark of hospice is its view of death not as failure but as an inevitable passage. If we face it honestly, we can prepare for it. If we prepare, we may find meaning, value, and deep human connection up to the very end.
Whether that sounds like common sense or wishful thinking, the perspective diverges sharply from the medical model and its almost exclusive focus on the mechanistic causes and treatment of illness. In a fundamental way, the hospice mission of helping people to die well runs counter to a medical system geared toward fighting death at all costs. On cancer wards, where hospices found their first patients, physicians initially viewed a specialty devoted to dying as a rebuke—“the antimatter of cancer therapy, the negative to its positive, an admission of failure to its rhetoric of success,’’ Siddhartha Mukherjee writes in his history of cancer, The Emperor of All Maladies.
Physician attitudes have changed since the early days, but not enough. It is the unusual oncologist or heart specialist who presents hospice as the next step along the continuum of expert care, a program like any other in medicine, staffed by people highly trained to meet the particular, complex needs of patients at this phase of their lives. More commonly, hospice is offered up as the sad last resort, after doctors have tried everything and the patient has “failed” to respond. Sometimes hospice is not offered up at all.
When Rusty decided at last to sign up for care from Hospice of the Valley, his oncologist refused to sign off. Rusty was not going to die from his leukemia anytime soon, the doctor insisted. Normally respectful of authority and always polite, Pamela lost it. She fired off an angry email noting that they understood there was always one more thing to try, but time was limited. The doctor relented.
With hospice care, Rusty Hammer’s symptoms were kept in check. Doctors, nurses, and medicines came to the house. The doctor stayed an hour each time—an hour! Rusty set up shop in his recliner, with his computer, printer, phone, and side table, friends and family coming and going, talking about politics. His children, Gerald and Jennifer, visited often. The living room became a salon, and he presided over it with the same charm, humor, and intelligence that had gotten him elected to the city council so many years earlier.
In the living room, Rusty wrote about his cancer experience. He described chemotherapy, acknowledging, “We were most naive about the side effects and risks of treatment at the various stages.” He railed at hospital doctors who just prescribed painkillers and left the room, with never a palliative care consult or a referral to a pain specialist. “I am a living example that, in many cases, the treatment can be worse than the disease.”
Students at a nearby high school were rehearsing Wit, a play about the final hours of an English professor dying from cancer. To better understand the play, they had done research about death and dying and read a Hospice of the Valley newsletter mentioning Rusty’s forthcoming book. Students came to interview him. Rusty published When Cancer Calls, Say Yes to Life, and had a book party at the hospice offices. More than fifty people came, including the teen-agers involved with Wit.
Hours before Rusty died, he called to wish an old friend happy birthday. Another dear friend—the woman who had first suggested hospice—dropped by. The housekeeper was there that day, which usually gave Pamela a chance to run errands, but she had a feeling she should stay. Rusty worked the phones and his computer, and that night, in his recliner, his breathing changed. He told Pamela, “I love you,” and nodded off.
For a long time afterward, even as she faced her future and joined a hospice-sponsored bereavement group, Pamela could not help but look back and think about how much suffering Rusty would have avoided had they considered hospice sooner.
Hospice should not be such a hard choice to make, but our health care system and even hospices themselves make it so. That’s in large part because of the way hospice grew in America and because of the compromises it had to make as it matured, which brings us to the idealists who started it all.
Reprinted with permission from Changing the Way We Die: Compassionate End-of-Life Care and the Hospice Movement by Fran Smith and Sheila Himmel, published by Viva Editions, 2013.