The medical and moral rebuke to doctor-assisted suicide
In the deepening debate over assisted suicide, almost everyone agrees on
a few troubling facts: Most people with terminal illnesses die in the sterile settings of hospitals or nursing homes, often in prolonged, uncontrolled pain; physicians typically fail to manage their patients’ symptoms, adding mightily to their suffering; the wishes of patients are ignored as they are subjected to intrusive, often futile, medical interventions; and aggressive end-of-life care often bankrupts families that are already in crisis.
Too many people in America are dying a bad death.
The solution, some tell us, is physician-assisted suicide. Oregon has legalized the practice for the terminally ill. Michigan’s Jack Kevorkian continues to help willing patients end their own lives. The prestigious New England Journal of Medicine has come out in favor of doctor-assisted death. Says Faye Girsh, the director of the Hemlock Society: "The only way to achieve a quick and painless and certain death is through medications that only a physician has access to."
This, we are told, is death with dignity. What we do not often hear is that there is another way to die—under the care of a specialized discipline of medicine that manages the pain of deadly diseases, keeps patients comfortable yet awake and alert, and surrounds the dying with emotional and spiritual support. Every year, roughly 450,000 people die in this way. They die in hospice.
"The vast majority of terminally ill patients can have freedom from pain and clarity of mind," says Martha Twaddle, a leading hospice physician and medical director at the hospice division of the Palliative CareCenter of the North Shore, in Evanston, Illinois. "Hospice care helps liberate patients from the afflictions of their symptoms so that they can truly live until they die."
The hospice concept rejects decisions to hasten death, but also extreme medical efforts to prolong life for the terminally ill. Rather, it aggressively treats the symptoms of disease—pain, fatigue, disorientation, depression—to ease the emotional suffering of those near death. It applies "palliative medicine," a team-based philosophy of caregiving that unites the medical know-how of doctors and nurses with the practical and emotional support of social workers, volunteer aides, and spiritual counselors. Because the goal of hospice is comfort, not cure, patients are usually treated at home, where most say they would prefer to die.
"Most people nowadays see two options: A mechanized, depersonalized, and painful death in a hospital or a swift death that rejects medical institutions and technology," says Nicholas Christakis, an assistant professor of medicine and sociology at the University of Chicago. "It is a false choice. Hospice offers a way out of this dilemma."
Hospice or Hemlock?
If so, there remains a gauntlet of cultural roadblocks. Hospice is rarely mentioned in medical school curricula. Says Dale Smith, a former head of the American Academy of Hospice and Palliative Medicine, "Talk to any physician and he’ll tell you he never got any training in ways to deal with patients at the end of life."
The result: Most terminally ill patients either never hear about the hospice option or enter a program on the brink of death. Though a recent Gallup Poll shows that nine out of 10 Americans would choose to die at home once they are diagnosed with a terminal disease, most spend their final days in hospitals or nursing homes.
And, too often, that’s not a very good place to die. A four-year research project funded by the Robert Wood Johnson Foundation looked at more than 9,000 seriously ill patients in five major teaching hospitals. Considered one of the most important studies on medical care for the dying, it found that doctors routinely subject patients to futile treatment, ignore their specific instructions for care, and allow them to die in needless pain.
"We are failing in our responsibility to provide humane care for people who are dying," says Ira Byock, a leading hospice physician and the author of Dying Well. George Annas, the director of the Law, Medicine and Ethics Program at Boston University, puts it even more starkly: "If dying patients want to retain some control over their dying process, they must get out of the hospital."
That’s precisely the argument that hospice advocates have been making for the last 25 years. Hospice programs are, in fact, the only institution in the country with a record of compassionate, end-of-life care for people with incurable illnesses. The hospice movement, and the palliative approach to medicine it represents, could revolutionize America’s culture of dying.
Since the mid-1970s, hospice programs have grown from a mere handful to more than 2,500, available in nearly every community. At least 4,000 nurses are now nationally certified in hospice techniques. In Michigan—Kevorkian’s home state—a statewide hospice program cares for 1,100 people a day, regardless of their ability to pay. The Robert Wood Johnson Foundation, a leading health-care philanthropy, has launched a $12-million initiative to improve care for the dying. And the American Medical Association, which did not even recognize hospice as a medical discipline until 1995, has made the training of physicians in end-of-life care one of its top priorities.
There is a conflict raging in America today over society’s obligations to care for its most vulnerable. Says Charles von Gunten, a hospice specialist at Northwestern Memorial Hospital, in Chicago, "It is fundamentally an argument about the soul of medicine." One observer calls it a choice between hospice or hemlock—between a compassion that "suffers with" the dying, or one that eliminates suffering by eliminating the sufferer.
A New Vision of Medicine
The modern hospice movement was founded by English physician Cicely Saunders, who, as a nurse in a London clinic, was aghast at the disregard for the emotional and spiritual suffering of patients near death. In 1967, she opened St. Christopher’s Hospice, an in-patient facility drawing on spiritual and practical support from local congregations.
"She wanted to introduce a distinctly Christian vision to mainstream medicine," says Nigel Cameron, an expert in bioethics at Trinity International University, in Deerfield, Illinois. The staples of the hospice philosophy quickly emerged: at-home care; an interdisciplinary team of physicians, nurses, pharmacists, ministers, and social workers; and a heavy sprinkling of volunteers.
Saunders’s vision got a boost from On Death and Dying, Elizabeth Kubler-Ross’s book based on more than 500 interviews with dying patients. The study, in which the author pleaded for greater attention to the psychosocial aspects of dying, became an international bestseller. By 1974, the National Cancer Institute had begun funding hospices; the first, in Branford, Connecticut, was regarded as a national model of home care for the terminally ill.
Early hospice programs were independent and community-run, managed by local physicians or registered nurses. Most operated on a shoestring, relying on contributions, patient payments, and private insurance. Many were relatively spartan, consisting of little more than a nurse and a social worker making home visits.
Religious communities were early and natural supporters. "The questions people ask at the end of life are religious questions," says Rabbi Maurice Lamm, the president of the National Institute for Jewish Hospice, "and they must be answered by somebody who knows the person’s faith." Synagogues, which usually support visitation committees for the sick, formed commissions to establish a Jewish presence in hospitals offering hospice care. The Catholic Church took a leadership role: Through its hospitals, health-care systems, and parishes, it began providing hospice beds, nurses, and priests.
By the mid-1980s, the movement started to take off. As hospital costs escalated, Medicare joined a growing number of insurance companies that offered reimbursement for hospice’s home-care approach. In 1985, President Ronald Reagan signed legislation making the Medicare hospice benefit a permanent part of the Medicare program.
Today nearly 80 percent of hospices qualify. Medicare picks up most of the bill for services, from pain medications to special beds. The majority of managed-care plans offer at least partial coverage, and most private insurance plans include a hospice benefit. Since becoming a part of Medicare, hospice has seen a four-fold increase in patients receiving its services.
Redefining Autonomy
The starting place for any hospice team is the patient: What kind of care does he or she really want? "It’s not about our goals for a patient," says Dorothy Pitner, the president of the Palliative CareCenter of the North Shore, which cares for about 200 people a day in Chicago’s northern suburbs. "They tell us how they define quality of life, and then together we decide the course of action."
This is how hospice respects patient autonomy: not by hastening death, but by working closely with patients and families to weigh the costs and benefits of care. "Patients have the right to refuse unwanted, futile medical care," says Walter Hunter, the chairman of the National Hospice Ethics Committee. "But the right to refuse care does not mean the right to demand active assistance in dying." Patients resolve the tradeoffs between controlling pain and feeling alert; they choose whether to use medical device that provides them with nutrients but causes swelling and congestion.
Though physicians and medical directors may make only a few visits to a patient’s home over the course of an illness, they supervise all caregiving decisions by the hospice teams. No one fills a prescription, inserts a tube, or gives medication without their OK. The central task of getting a person’s pain under control falls to doctors, working closely with pharmacists.
Registered nurses serve as case managers. Usually they are the first to enter the home of the dying, make an assessment, and describe symptoms to physicians. They visit the home weekly and are on call 24 hours a day for emergencies. Nurses, along with nurse’s aides, not only act as the go-between for families and physicians; they also bear much of the burden for making sure patients are comfortable, from administering drugs to drawing blood to suggesting medications or therapies. Says Marty Ayers, the executive director of the Hospice and Palliative Nurses Association, "The nurses are still breaking ground on what works for people."
Volunteers are also important to that work. For several hours a week they help out at home, cooking or doing household chores, keeping an eye on bed-ridden patients, or just listening as family members struggle with grief. Last year, about 100,000 volunteers joined 30,000 paid staff in hospices nationwide. They are, as one veteran caregiver puts it, the "sponges" in the mix, soaking up some of the anguish that accompanies death and dying.
The Death Wish
Hospice care usually begins where traditional medicine ends: when it becomes clear that a person’s illness will not succumb to even the most heroic of medical therapies. "This is the toughest problem for doctors and families, the issue of letting go," says Alan Smookler, the Palliative CareCenter’s assistant medical director. "There’s a lot of technology out there—feeding tubes, antibiotics, oxygen, ventilators, dialysis—and the hardest problem is saying that these interventions are no longer beneficial."
Such was the case for John Brown, diagnosed with terminal cancer. Brown (not his real name) was treated with radiation and chemotherapy in a Washington, D.C.-area hospital. The treatments proved ineffective, and the pain from his cancer got worse. His wife convinced him to enter care at a local hospice program.
"His immediate request was that his wife call several friends, all of whom were hunters, and ask them to shoot him," says the Reverend Jeanne Brenneis, of the Hospice of Northern Virginia. "This was a man very used to being in control, and he was frightened of being helpless and in pain."
The hospice team concentrated first on relieving Brown’s physical discomfort. His physician prescribed several pain-killing drugs, while a nurse watched for other symptoms. Within a couple of days, his pain was under control.
Though mostly bed-bound, Brown spent the next five months at home laboring as best he could at his favorite hobby: boat design. The hospice team set up a drafting board by his bedside so he could go on working. He finished one design and was halfway through another when he died.
He caught up on some other business as well: spending time with his wife and adult daughters and, after years of avoiding church, coming to terms with God. "He had time to reflect and think," Brenneis says, "and he grew a great deal emotionally and spiritually in that time."
Losing Control
Brown’s story is no longer remarkable. Interviews with hospice caregivers uncover a singular experience: Once the pain and symptoms of an illness are under control, people rarely talk about taking their own lives. "Those requests go away with good palliative care," says von Gunten, who directs palliative education at Northwestern University Medical School. "I see this on a routine basis."
The Hospice of the Florida Suncoast, in operation since 1977, works mostly with retirees in Pinellas County. Now the largest community-based hospice in the country, it has about 1,200 patients under care on any given day. Programs extend to nearly all of the 100 or so nursing homes in the area. About 80 percent of all county residents with end-stage cancer find their way into its orbit of care.
Hospice president Mary Labyak says many people come in eager to hasten their own deaths, but almost always have a change of heart. Of the 50,000 patients who have died under the group’s care, she says, perhaps six have committed suicide. "The public perception is that people are [choosing suicide] every day. But these are people in their own homes, they have the means, they have lots of medication, and they don’t choose death."
Hardly anything creates a more frightening sense of chaos than unrelieved pain and suffering. "We know that severe pain greatly reduces people’s ability to function," says Patricia Berry, the director of the Wisconsin Cancer Pain Initiative. "If we don’t control symptoms, then people can’t have quality of life, they can’t choose what they want to do or what to think about."
By interrupting sleep, curbing appetite, and discouraging personal interactions, pain doesn’t just aggravate a person’s physical condition. It also leads, as a recent report by the Institute of Medicine puts it, to "depression and demoralization" of the sufferer. Says David English, the president of the Hospice of Northern Virginia, one of the nation’s oldest programs, "You can’t address the psychosocial issues of a person who is in pain."
Hospice has understood this connection between pain and overall well-being from the start. After conventional treatments fail, says Martha Twaddle, "you’ll often hear doctors say ‘there’s nothing left to do.’ There’s a lot left to do. There is a lot of aggressive care that can be given to you to treat your symptoms."
Hardly anyone doubts that more energetic caregiving for the dying is in order. A 1990 report from the National Cancer Institute warned that "undertreatment of pain and other symptoms of cancer is a serious and neglected public health problem." The New York State Task Force on Life and the Law, in arguing against legalizing assisted suicide, cited the "pervasive failure of our health-care system to treat pain and diagnose and treat depression."
The best studies show that most doctors still undertreat pain and that most people with chronic and terminal illnesses experience needless suffering. A survey was taken few years ago of 1,177 U.S. physicians who had cared for more than 70,000 patients with cancer during the previous six months. Eighty-five percent said the majority of cancer patients with pain were undermedicated; nearly half of those surveyed rated their own pain management techniques as fair or very poor.
A Strategy of Comfort
It’s a pretty quiet Wednesday morning on the hospice unit at Evanston Hospital. The 14-bed wing, run by the Palliative CareCenter of the North Shore, supports terminally ill patients who require more intensive care than home-based hospice can provide.
Members of the hospice team slowly file into a conference room. Eleven people—a medical director, a doctor, nurses, social workers, volunteers, and a chaplain—find chairs and sip coffee. It is their weekly team meeting: For the next two hours, they will haggle over strategies for treating each patient on the unit.
After discussing a few other cases, the group lingers over the status of an 81-year-old man who is dying of lung cancer.
Says Janna Roop, a nurse, "He’s getting 10 milligrams of morphine."
Someone asks, "Is he in pain?"
"Yes, his pain has greatly increased."
A social worker: "His family is very concerned—"
Says Roop, "They don’t want him medicated. They want him awake."
"The issue is whether or not he is comfortable," Twaddle says. "Let’s talk about how to make him comfortable."
Roop: "He was telling me ‘I’m hurting,’ and I would give him morphine, and the family would look at me like I was killing him."
Twaddle: "A family meeting might help."
"Maybe."
"You could ask a question of them: ‘Would you prefer that he’s in pain?’"
"They say he’s too confused to know whether he’s in pain."
"Confusion doesn’t obscure pain."
A Debt to Hospice
The pain-control approach of hospice depends on an aggressive use of opioid drugs—narcotics such as morphine, fentanyl, codeine, or methadone. Despite the effectiveness of these drugs in clinical settings, euthanasia supporters often ignore or contest the results. Timothy Quill, a leading advocate of doctor-assisted suicide, writes that "there is no empirical evidence that all physical suffering associated with incurable illness can be effectively relieved."
Ira Byock, the president of the American Academy of Hospice and Palliative Medicine, says that’s medical bunk. A 20-year hospice physician, Byock has cared for thousands of patients with terminal disease. "The best hospice and palliative-care programs have demonstrated that pain and physical suffering can always be alleviated," he says. "Not necessarily eliminated, but it can always be lessened and made more tolerable."
Physicians and other authorities outside the hospice movement agree that most pain can be controlled. Authors of the New York Task Force report assert that "modern pain relief techniques can alleviate pain in all but extremely rare cases." A primer on cancer-pain management from the U.S. Department of Health and Human Services (HHS) urges clinicians to "reassure patients and families that most pain can be relieved safely and effectively."
The wide acceptance of the use of morphine and other narcotics to control pain owes much to hospice caregivers. The key people at a World Health Organization conference, which helped establish the HHS guidelines on pain control, were leaders in hospice care. Says James Cleary, the director of palliative medicine at the University of Wisconsin Medical School: "The whole concept of providing good palliative care has really been driving the movement."
Though most of the pain management research conducted over the last decade has occurred in academic and clinical settings, the front-line work of hospice staff has added significantly to what we know about mitigating pain and suffering. Says Cleary: "Hospice has been a part of the whole learning process because they care for cancer patients, and most of what we’ve learned has come from them." Patricia Berry, of the Wisconsin Cancer Pain Initiative, goes a step further: "The hospice movement finally legitimized the practice of pain management."
What We Know About Pain
The big clinical breakthroughs in understanding the most effective medical uses of opioids have come in the last 10 to 15 years. It is now widely accepted that acute pain should be treated "pre-emptively"—that is, by giving narcotics regularly, around the clock, when pain first occurs. Previously, physicians would administer painkilling drugs only when patients had an acute need for relief. But the best clinical studies show that continuous doses keep the person’s nervous system from becoming hypersensitive to pain and thus prevents future episodes.
In its 1994 guidelines for managing cancer pain, the Agency for Health Care Policy and Research at HHS says maintaining a constant level of drug in the body wards off pain. "They observed this in the hospices in London," von Gunten says, "but now we understand the neurobiology that explains it."
A second discovery overturns popular notions about drug medications and addiction. Research studies from at least 1980 onward demonstrate that opioid use does not lead to addiction among acute pain sufferers. Physical dependence—not the same as addiction—becomes a problem when medication is quickly discontinued, but experts say it can be easily managed by gradually reducing dosages. Psychological addiction, even when high doses of narcotics are given, does not seem to occur.
The most widely cited studies on drug addiction show that morphine only becomes psychologically addictive in people with a history of substance abuse, or when it is used for reasons other than managing serious pain. "I’ve been with hospice for over 20 years," Berry says, "and I’ve never seen anybody become psychologically dependent." In a review of 10,000 burn patients requiring large amounts of opioid therapy, none were reported to have become addicted. The M.D. Anderson Cancer Center in Houston, citing the best clinical studies, discounts the risk of opioid addiction when used to treat pain.
A final discovery—contradicted by the advocates of assisted suicide, among others—is that even large doses of morphine will not suppress respiration or hasten death. "Morphine is an enormously safe drug for someone who is tolerant to it, and most people in pain at the end of life are," says Eric Chevlen, the director of palliative care at St. Elizabeth’s Hospital, Youngstown, Ohio. The HHS guidelines essentially dismiss the risk of respiratory compromise. Studies published in the New England Journal of Medicine and by the American Pain Society say the occurrence of respiratory depression is "rare" among patients with chronic pain.
"It can suppress respiration if it’s overdosed," says Twaddle, a professor at Northwestern University Medical School, "but not if you give them only enough to control their pain." The reason: Pain puts the central nervous system in a state of alertness, experts say, and the body quickly develops a tolerance as doses are gradually increased.
This process, called "titrating to effect," allows some patients to take large amounts of opioid drugs without ill effects. "We have people taking hundreds of milligrams of morphine a day. They need that much to deal with pain, yet they’re alert," says Kathy Neely, the associate medical director at Northwestern Memorial Palliative Care Center in Chicago. "The dose they take would probably kill us, but their body gets accustomed to it." Says Kathleen Foley, a pain expert at Memorial Sloan-Kettering Cancer Center in New York, "There appears to be no limit to tolerance" when drugs are properly administered.
Rather than hastening death, good pain management can actually prolong life. When people are not in pain, they eat better and their body’s immune system often improves. They usually become more mobile, decreasing their risk of respiratory infection. At least for a time, these patients rebound, and many go on to live weeks longer than anyone anticipated. Hospice nurses and social workers say they see this occur all the time.
Changing the Landscape
Not long ago oncology staff from Evanston Hospital, counseled in pain control techniques by Martha Twaddle, called her to report that a patient with prostate cancer who received morphine was barely breathing. Twaddle decided to visit the man herself.
"What is it that hurts?" she asks.
The man mumbles something about a machine.
Twaddle eventually understood: The patient is an octogenarian Russian immigrant who doesn’t understand much English. "He had experienced the Holocaust, and now they’re taking him down every day to a machine for radiation. So when they put him on the gurney, he says he’s in pain."
She shakes her head. "You don’t treat anxiety and fear with morphine. You treat anxiety and fear with education and support."
This is what hospice staff mean by holistic or palliative medicine: Their medical gaze sees beyond the disease itself. Though important, the hospice contribution to pain management represents only part of its strategy of care. Its support for palliative medicine may prove to be the movement’s most important legacy.
Palliative care studies are now appearing at major universities, hospitals, and research centers. The United Hospital Fund in New York City has organized a 12-hospital project to test palliative care programs. D.C.’s George Washington University researchers have set up a Center to Improve Care of the Dying. The federal Assisted Suicide Funding Restriction Act, passed last year, authorizes HHS to fund research projects that emphasize palliative medicine to improve care for the terminally ill.
Oddly enough, until the doctor-assisted suicide debate, the hospice philosophy of care was not acknowledged by the medical establishment. The nation’s top medical schools, the American Medical Association, the College of Physicians, the Institute of Medicine, and the National Academy of Science all mostly ignored the movement and its aims.
"They all acted as if hospice was a friendly aunt who would sit and hold the hand of a patient, but not anything serious adults needed to pay attention to," Byock says. "But now hospice is being recognized as a robust, medically competent, team-based approach to the person and family who are confronting life’s end."
The Road Ahead
What started out as something of a revolt against traditional medicine is slowly becoming mainstream. In important ways, hospice remains faithful to Saunders’s vision of comprehensive, home-based care to the terminally ill. Last year, at least three-quarters of hospice patients died at home. Though most of its clients suffer from cancer, hospice now treats those with a range of life-threatening diseases, including Alzheimer’s, lung disease, heart disease, and AIDS.
Despite the growing reach of hospice, however, too many people still enter a program already at death’s doorstep. Says Naomi Naierman, the president of the American Hospice Foundation, "The resistance on the part of physicians to introduce hospice before the brink of death is a major barrier." According to one study, the median length of survival after entering hospice is barely two months. More than one in four patients dies within two weeks, many within a couple of days. Researchers from the University of Chicago and the University of Pennsylvania concluded in a 1996 report that "most hospice patients enter the programs too late to benefit from them."
Moreover, the mainstreaming of hospice is posing new challenges. Medicare funding has made its rapid growth possible and helped professionalize its services. But it also has institutionalized the movement, making it less connected to community support and much more dependent on government funding.
Only about 28 percent of all hospices are now independent and community-based; nearly half are operated by hospitals or home health agencies. In its early years, hospice ran primarily on grants, charitable donations, and volunteers. Medicare now pays for about two-thirds of all hospice care. For-profit hospices, spurred on by the availability of Medicare, constitute 15 percent of the industry. Observers say avoiding the worst excesses of managed care may be one of the movement’s greatest challenges.
Last year Medicare dedicated about $2 billion, roughly 1 percent of its payments, to hospice care, at a per diem cost of $94.17 per patient. But of course the solvency of Medicare is up for grabs. Says Carolyn Cassin of the Hospice of Michigan: "The future of hospice as we have known it — defined and funded primarily by the federal government — is uncertain."
Despite these hurdles, hospice and palliative programs continue to make inroads in communities around the country. New programs are appearing in various caregiving settings, from children’s hospitals to nursing homes. Nearly 100 hospices have established in-patient units, usually attached to hospitals, to offer more intensive help than traditional programs. And a growing number of groups are extending palliative care to the chronically ill who are not in hospice and are still treating their diseases. "There needs to be a pathway of good care for people with a terribly serious disease who might live a long time," says Joanne Lynn, the director of the Center to Improve the Care of the Dying. "That’s how most of us will die."
Living Until They Die
Even the goal of easing people’s suffering, as central as it is to hospice care, is not an end in itself. The aim of comfort is part of a larger objective: to help the terminally ill live as fully as possible until they die. This is where hospice departs most pointedly both from traditional medicine and the advocates of assisted suicide.
Hospice, by shining a light on the emotional and spiritual aspects of suffering, is challenging the medical community to re-examine its priorities. The period at the end of life, simultaneously ignored and micromanaged by conventional approaches, can be filled with significance. To neglect it is to diminish ourselves. "Spiritual inattentiveness in the face of dying and death can lead to the sad spectacle of medical technology run amok," says Laurence O’Connell, the president of the Park Ridge Center, a medical ethics think tank in Chicago.
Those who have spent years tending to the dying say there is a mystery at life’s end, one that seems to defy the rules of medicine. Walter Hunter, a medical director at the Hospice of Michigan, recalls a patient with end-stage kidney disease who entered hospice and quickly asked to be taken off of the hemodialysis (a kidney machine) needed to keep her alive. Conventional medical wisdom put her life expectancy at two to three weeks without the technology, but the woman said she was eager to die.
Eight months later she was still alive. She asked Hunter, then her primary doctor, why she was still breathing. "I don’t know," the doctor replied. "According to the textbooks, you should be dead."
Hospice staff had been busy in those months, keeping the patient comfortable, providing emotional and spiritual support. They later learned that just two days before the woman died, she had reconciled with one of her estranged children.
Sharon McCarthy has been a social worker at the Palliative CareCenter of the North Shore for 18 years. She has cared for thousands of dying patients, getting a ringside seat to the grief of countless families. For the vast majority, she says, hospice provides the window of opportunity to get their lives in order. One of the most common desires: forgiveness, both extended and received. "There’s a lot of non-physical pain that goes on when these things aren’t done." Says Mary Sheehan, director of clinical services and a 12-year veteran in hospice: "Ninety-nine percent of the time they have unfinished business."
Saving the Soul of Medicine
Hospice or hemlock: Though both end in death, each pursues its vision of a "good death" along radically different paths. At its deepest level, the hospice philosophy strikes a blow at the notion of the isolated individual. It insists that no one dies in a vacuum. Where one exists, hospice physicians, nurses, and social workers rush in to help fill it.
For many hospice staff and supporters, such work is motivated and informed by a deeply moral and religious outlook. "I do not work within a specific religious context," writes Byock in Dying Well, "but I find more than a little truth in the spiritual philosophies of Christianity, Buddhism, and Judaism." Karen Bell, the hospice director of the Catholic-run Providence Health System in Portland, Oregon, says her organization is propelled by religious values. "The foundational principle is that life has a meaning and value until the very end, regardless of a person’s physical condition or mental state."
Faith communities have always been involved in caring for the desperately ill, founding hospitals, clinics, medical schools, and so on. Though not usually connected to religious institutions, nearly all hospice programs make spiritual counseling available; rabbis, chaplains, and ecumenical ministers make frequent home visits and regularly attend hospice team meetings.
For many religious physicians, tackling the issue of personal autonomy is a crucial step in end-of-life care. "This is the Christian ans wer to whose life it is: ‘It is not your own; you were bought at a price,’" says Yale University Medical School’s Dr. Diane Komp, quoting the apostle Paul. "But if we are not in control of our lives, then we need companionship. We need the companionship of God and the companionship of those who reflect the image of God in this broken world."
Leon Kass, a physician and philosopher at the University of Chicago, says the religiously inspired moral vigor of hospice sets itself squarely against the movement for assisted death. "Hospice borrows its energy from a certain Judeo-Christian view of our obligations to suffering humanity," he says. "It is the idea that company and care, rather than attempts at cure, are abiding human obligations. These obligations are put to the severest test when the recipient of care is at his lowest and most unattractive."
