As You Lay Dying
Most Americans die in hospitals. At last, hospitals are dealing with it.
By Alicia Potter
JULY 13, 1998: Bill O'Toole lies in a bed at Beth Israel Deaconess Medical Center, his face stretched tight across his skull, the skin on his torso mottled deep purple. After 10 years with AIDS, he is blind in one eye and weighs 80 pounds.
For two weeks, Bill has barely had anything to eat or drink. For 30 days, not one doctor has piped in fluids or taken an x-ray or a blood test. His veins are full of morphine. In less than a week, he will be dead.
"I never questioned whether or not we were taking the right route," says his brother Kevin. "Not even once." Like the 14 other patients in his ward, Bill has come to the hospital to die. Specifically, he has come to Beth Israel Deaconess's Palliative Care Center, the only inpatient palliative-care ward in a New England hospital and one of the few in the US. To "palliate" means to make something less severe; here, what's being relieved is the physical and psychological pain of death.
On this hushed floor, no one talks about how to cure terminally ill patients like Bill: they talk only about how to keep them comfortable. This is almost exactly the opposite of what a hospital is set up to do. Palliative care means a hospital has to restrain its arsenal of diagnoses and cures: no MRIs, no CAT scans, no EKGs; no surgery, no biopsies, no lab tests. Instead, patients receive state-of-the-art pain management -- drugs, drips, dehydration -- and plenty of emotional support.
It's generally estimated that 80 percent of Americans will die in hospitals and nursing homes. Yet, despite the benefits for both patients and families, the grassroots "dying well" movement has only recently breached the walls of institutional medicine. Hospitals have just begun to acknowledge that overseeing a good death is part of their mission.
Locally, Beth Israel Deaconess represents the leading edge, but other hospitals are showing similar interest. "The medical community is starting to understand that there needs to be an alternative to staying in the hospital and getting better," says Walter Foreman, a physician who is president of the American Academy of Hospice and Palliative Medicine, the national organization for palliative-care professionals. "It's realizing it can't cure everything right now."
"People want a more holistic, more individual approach to dying," Foreman says. "Finally we're admitting we're not getting off this planet alive." To Foreman and others like him, this kind of treatment -- and acceptance of death -- is common sense. But death and medicine are still an uneasy fit. To some doctors, palliative care is a touchy-feely "art" that doesn't belong in a hospital at all.
And then there's Bill O'Toole. All he wants is a comfortable death.
Touring the Palliative Care Center at Beth Israel Deaconess, it's nearly impossible not to peek into the open rooms, to see what death looks like. And for the uninitiated, what's most startling isn't the blank, bony faces, some wizened, some young, some staring at TVs, most staring at nothing. It's the sudden glimpse of an empty bed, its white sheet pulled taut.
"We've had a busy week," says nurse Trudy Colburn, with halting matter-of-factness. Nine out of 15 patients have died.
But Colburn isn't dejected. And she's certainly not depressed. "We don't believe that death is a bad thing," she says. "It's natural. Our whole job is to teach people about the dying process."
Hospital staffs speak of palliative care as a new concept, but it's not. The palliative-care therapies used at Beth Israel Deaconess have their roots in the hospice movement, born in this country in 1974 when the first hospice opened in New Haven, Connecticut.
Hospices grew out of a desire to make death a more comfortable, more personal experience -- in other words, to get it out of the hands of the medical establishment, which has historically not been at ease with the idea that patients die. In the 25 years since that first hospice opened, the philosophy has gradually won mainstream acceptance; today hospice care is even covered by Medicare. And now, finally, the hospice approach is being absorbed by the very institutions whose shortcomings the movement was founded to address. Beth Israel Deaconess has been working with off-site hospices for several years now. Such efforts have included a collaboration with a Waltham-based hospice service, Healthcare Dimensions, to help terminally ill patients receive palliative treatment during their time in the hospital. Under that program, though, the hospice nurse was in for only one hour a day; for the other 23 hours, patients were treated by staff nurses, most of whom did not specialize in this kind of care.
The patients' demands were great -- staggering doses of painkillers, frequent shifting to prevent bedsores, spiritual solace, constant attention. Eventually the hospital couldn't ignore the obvious: these patients needed full-time, specialized care. In the spring of 1996, the hospital renovated a wing and opened the Palliative Care Center. Beth Israel Deaconess doesn't provide the palliative-care specialists itself -- the center is staffed by the hospice service -- but still, advocates find the move encouraging. Michael Cantor, cochair of the Massachusetts Medical Society's Compassionate Care Task Force, calls Beth Israel Deaconess's approach "an example of how we could be dealing with end-of-life care in the state's hospitals and nursing homes."
To date, fewer than a dozen hospitals nationwide offer this type of inpatient facility. Cleveland Clinic in Ohio opened the first in 1986; most of the rest have sprung up in the past three years. Some hospitals without dedicated palliative-care wings are taking steps in a similar direction: at Mass General, for instance, an interdisciplinary team works with certain wards -- intensive care, oncology, AIDS -- to deliver comprehensive palliative care. Most patients are eased to home hospice care, if appropriate, with the staff still serving the patient and family. Others may be moved to the Beth Israel Deaconess unit.
And interest seems to be spreading. Colburn reports that representatives from other Boston-area hospitals met last month to discuss expanding their own palliative-care services. There's even talk of formalizing the group as the Boston Coalition for Palliative Care.
"We haven't done a good enough job organizing the system so that patients have access to good palliative care," says Cantor, who's also a geriatrician at the Hebrew Rehabilitation Center for Aged. "By forming a coalition, we can figure out what's going on at all the different medical centers, develop educational programs, and finally get that system together."
At Beth Israel Deaconess, the system looks like this: each patient receives a room that's slightly homier than your typical hospital room, with faux-wood floors and patterned curtains. An interdisciplinary team from Healthcare Dimensions-- doctors, nurses, a social worker, a bereavement specialist, a chaplain, and volunteers -- provides 24-hour support to patient and family.
To be eligible, it's not enough just to be dying. Patients must show a need for full-time professional care and meet Medicare's strict regulations for reimbursement: they must be within their last six months of life, as determined by a doctor, and be receiving no curative treatment. With about three patients dying a week, there's rarely a waiting list, Colburn says.
The majority of patients are sick with cancer or AIDS. Almost all of them -- 250 patients to date -- die here. They stay on the floor anywhere from 48 hours to three months; the average stay is one week.
According to advocates, they die much happier than they would in a traditional hospital setting. Palliative care can relieve almost all physical end-of-life suffering, with the exception of weakness and dementia. An array of narcotics eases shortness of breath, pain, and nausea, while dehydration -- not forcing a patient to eat or drink if he can't do so on his own -- reduces digestive discomfort and the chances of edema, a condition caused by too much fluid in the body. By the last day or two of life, most patients are unconscious but comfortable.
They're also receiving something home hospice care can't offer: round-the-clock attention without debilitating strain on the family. Not dying alone, after all, is part of dying well; the hospice movement evolved in large part to give patients some companionship at the end of life and to involve the family in the intimacy of caregiving. But the pressures on caregivers mean that sometimes the family is in danger of collapsing before the patient does.
Kevin O'Toole saw it in his 70-year-old mother's face. For three years, ever since he brought Bill from San Francisco to be cared for in his mother's Stoneham home, life had become a loving yet wrenching struggle to keep his brother alive. Something had to give.
"Bill became just too much care for my mother," says Kevin, 45. "[The family] was performing medical procedures. We could change tubing; we could give shots. It was amazing what we found we were able to do. But it just got to a point where it was constant, constant care. We were really afraid for my mother's health."
Without their mother to tend to Bill full-time, home hospice care was not an option. Meanwhile, the rehabilitation centers and nursing homes the O'Tooles visited didn't meet their standards. Recognizing that Bill, 48, had little time to live, his nurse practitioner at Beth Israel Deaconess recommended the Palliative Care Center. Three days later, Bill settled into Room 204, his favorite Matisse and O'Keeffe on the wall, his bedside lined with photographs.
In some ways this was a relief for the O'Tooles, but it also meant an important -- and difficult -- change in outlook. Suddenly, to "do everything possible" no longer meant that Bill might somehow, magically, be cured. Indeed, the shift from curing to caring is as symbolic to the family as it is to the patient.
That's where Kate Glass comes in. A licensed clinical social worker at the Palliative Care Center, Glass helps families accept the reality that, from here, the patient most likely will not come home. It's easily one of the most emotionally grueling jobs in the hospital. What gets her through the day is a belief that would be deemed blasphemous in any other wing: death, she says, is life.
"Life and death are mirrors," she explains. "Whatever the patient is going through, so is the family. It's just on a different level. Both are grieving, both are fearful, both feel pain, neither knows what to expect. What people have to realize is that death can be a really beautiful part of living."
Glass doesn't just help families make peace with the dying process; she also helps them make peace with each other. Some family members need help reconciling their pasts with the dying patient; others arrive angry at previous doctors who may have stirred hope of a recovery. Quite often, she must umpire as families argue over such controversial steps as discontinuing feeding.
"At first, some of my family had a hard time with the fact that Bill wasn't receiving traditional medical attention," Kevin recalls. "It's natural to feel you should feed somebody, you should get them water, you should not give up hope. . . . It was hard to accept that those things just weren't appropriate."
In another wing of the hospital, where patients often share rooms, the O'Tooles gathered around Bill's bed might have been eyed as "in the way" -- a distraction from the real business of medicine. In the Palliative Care Center, by contrast, family members can spend the night on bedside cots, and they're encouraged to provide help such as feeding ice chips to or simply touching the patient.
And to a palliative-care patient's family, death doesn't mean a doctor emerging from behind a closed door to deliver the news with a clap on the shoulder and a curt "I'm sorry," never to be seen again. Both the Palliative Care Center and Mass General offer bereavement support to families for at least a year after a loved one's death.
"It's important to help a family see the best in what they've done, to acknowledge what they've been through," says Glass. "You may not be able to fix everything, but you sure can listen."
And learn. Glass nods solemnly: "It teaches you your day is coming."
"Your day is coming," however, has not traditionally been a part of med-school education. If one challenge of palliative care is the psychological task of helping families accept death, another challenge is cultural: getting doctors to accept it.
"In the hospital, death is often ignored. It's glossed over, it's treated as some technical problem you can fix," says J. Andrew Billings, medical director of the Palliative Care Service at Mass General. "Above all, it's treated as a failure."
Says Marissa Slaven, medical director of the Beth Israel Deaconess Palliative Care Center: "There's this huge stigma and fear against destroying hope. . . . Who wants to tell a family their loved one is not going to get better? As a result, the patient doesn't make it [into palliative care] until the last week of life, if at all."
This is partly a matter of education. In a study Billings researched with his wife, Susan Block, of Harvard Pilgrim Health Care, he discovered that medical students and residents are not consistently taught about pain relief, hospice care, and communication about death and dying. Fewer than 10 percent of internal-medicine training programs include supervision and treatment of dying patients who are receiving palliative care.
Of course, patients think of death as failure, too, no matter how inevitable it may be. A study released by the Dana-Farber Cancer Institute in June found that patients were often unrealistically hopeful about their chances of survival, thus influencing doctors to choose aggressive treatment over comfort-care measures.
A 1996 New England Journal of Medicine survey confirms that most hospice referrals are made very late in the course of a terminal illness -- often too late for the patient to receive substantial palliative care.
And so patients pay the price in pain. Only one in four Americans will die quickly and unexpectedly; half will suffer in moderate to severe pain in the last few days of life; and a third will spend at least 10 of their last days in an intensive-care unit.
This is changing, if slowly. The emergence of palliative care in teaching hospitals like Beth Israel Deaconess and Mass General reflects a nationwide trend to shake doctors out of denial. An elective course in palliative care that Billings teaches at Harvard Medical School is being upheld as a national model, while several research and philanthropic organizations, including the Project on Death in America and the Robert Wood Johnson Foundation, have launched initiatives to improve "death education." And the American Academy of Hospice and Palliative Care Medicine has recently begun to sponsor a certification program, through which 450 doctors have already passed.
Not everyone's lining up, however. Even within Beth Israel Deaconess, Slaven feels her unit is misunderstood, her work oversimplified or trivialized by other doctors, who may even link palliative care with physician-assisted suicide (see "Is It Suicide?", right). Says Slaven: "In the rest of the hospital, there's still this perception that if you're not doing everything to save a life, then what are you doing? Nothing? Except the answer is not "nothing" -- it's full, loving, tender care."
It's words like loving and tender that tend to make doctors snub palliative care as the soft-core "art of medicine." The institutional friction is subtle but stubborn. Trudy Colburn recalls a time when one doctor moved a patient to the unit, then sarcastically asked if her staff was just going to dope the patient up with morphine.
In a profession reliant on high-tech healing, the ability to deliver comfort -- whether physical or emotional -- gets scant respect. Billings, too, sees this as a big concern.
"To relegate palliative care to the 'art' of medicine is to say that we can't talk about end-of-life care or learn how to teach it," he says. "That worries me. Just as medical schools teach very distinct skills on how to use morphine, they can also teach doctors how to be better listeners and more helpful to patients and their families."
In Britain and Australia, palliative care is already recognized as a medical specialty. Consequently, hospital-run facilities are much more common -- and more comprehensive. The best centers offer art and music therapy, full-time masseurs, and family quarters. As Slaven and Billings report, however, it'll be some time before America catches up.
For about a week, staff at the Palliative Care Center have been warning Kevin. "It's Bill's time," they say. "He'll probably die today." But Kevin looks at Bill's throbbing pulse and says no. And every day, he's right.
But one day Kevin just knows. Convinced that Bill's death is imminent, he refuses to leave the center, pacing late at night outside Room 204 in sweatpants and stocking feet, eating warmed-over Chinese food and drinking Guinness.
Is it suicide?It's no surprise that palliative care gets tangled up in the debate over physician-assisted suicide.
After all, no one is trying to prolong the lives of palliative-care patients like Bill O'Toole. In fact, many of the techniques used in palliative care -- dehydration, heavy sedation -- can even hasten death. To the public, and to doctors schooled in the cure-or-else approach to medicine, the phrase We're letting the disease take its course may indeed seem like a soothing euphemism for We're helping the patient die.
But last summer, when the US Supreme Court ruled that states may ban physician-assisted suicide, it drew a specific distinction between assisted suicide and palliative care. Although aggressive palliative care could accelerate death, the Court determined, it is not considered assisted suicide as long as the intent is to ease pain.
In fact, there is a relationship between the two -- but not the one you'd expect. Studies show that the more extensive the palliative care, the less the demand for physician-assisted suicide. In a 1996 New York Times Magazine article on the right-to-die movement, physician Kathleen Foley, director of the Project on Death in America, a $15 million education effort, reported that when most suicidal terminally ill patients start receiving adequate palliative care, they stop seeking physician-assisted suicide. Conversely, in the Netherlands, where assisted suicide and euthanasia were legalized 25 years ago, palliative care remains 20 years behind what's currently available in the US.
"Most people want to extend their lives," says J. Andrew Billings, medical director of the Mass General Palliative Care Service. "Those patients who are saying they want to die sooner rather than later are essentially saying there's something wrong with the care they're receiving."
It's easy to see why assisted suicide gets all the attention: it's radical, it's frequently illegal, and it has a flamboyant advocate in Jack Kevorkian. But according to Marissa Slaven, medical director of the Beth Israel Deaconess Palliative Care Center, assisted suicide wouldn't be necessary if hospitals were better at dealing with death at all levels -- physically, emotionally, and spiritually.
Says Slaven: "Death is still such an uncomfortable experience in North America. Of course, people want to find a quick death, a painless death, a controlled death. But the answer is not to say to a patient, 'Okay, so you want to die? Let's kill you.' The answer is to say, 'What are the problems? Why do you want to die? Let's see what we can do to make that better. Let's find out what's making you afraid.' "
Still, both Billings and Slaven agree that until death becomes a more dignified, more comfortable experience in this country, the right-to-die controversy -- and palliative care's role in it -- will smolder. Optimistically, Slaven adds that at the very least, the ongoing debate may help to make doctors and patients aware that palliative care exists.
He sleeps on the cot beside Bill's bed, as he's done many times during his brother's stay. When a nurse comes in to shift Bill at 4:30 a.m., Kevin wakes up and watches his brother. He notices Bill's breathing is not even: it stops and starts, stops and starts.
Ten miles away, in Stoneham, Bill and Kevin's mother is dreaming about a hearse driving up Route 93. Startled by the nightmare, she's awake when Kevin phones her. He tells her Bill is dead.
In the next few weeks, Kate Glass will call Kevin, and they'll talk for more than an hour about how he and his family are coping. But for now, as other members of his family wake up to the news, Kevin stays for a moment to talk to Bill, then gathers up his brother's few belongings, and exits Room 204, crying. On the wall, he leaves the Matisse and the O'Keeffe.
Bill O'Toole got what he wanted. He died without pain, with his brother by his side. It was a good day at the Palliative Care Center.
Dollars and senescenceHow cost-effective is a comfortable death? It's a crass question, but in this age of bottom-line medicine, it's also an important one.
Certainly millions of dollars are spent keeping alive terminally ill patients who are ready to die. In fact, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), a massive 1996 study on how people die in America, found that doctors continued to perform aggressive (read: expensive) treatments on patients whose prognoses were incredibly poor. Nearly 40 percent of the patients spent at least 10 days in the intensive-care unit.
At Beth Israel Deaconess Medical Center, those 10 days would cost $20,000. And that's just the room and board -- no medication, no doctors' fees, no other inevitable add-ons.
Contrast that to palliative care. Most patients remain at the Beth Israel Deaconess Palliative Care Center for about a week before dying. While there, they require no high-priced tests or life-prolonging machinery. Palliative-care nurse Trudy Colburn reports that each day costs $475.
Sounds like a bargain. But it's not: the center just breaks even.
"Hospice and palliative care are reimbursed so poorly," says Marissa Slaven, medical director of the Palliative Care Center, "that . . . it's almost impossible to do. Medicare, which pays for most of our patients, pays so much less than what it costs to take care of them that it's just not making money."
Moreover, it's anticipated that Medicare will be tightening its regulations on hospice eligibility, shrinking the pool of qualified patients. Already, hospitals are fined if dying patients live beyond what should have been their last six months.
That doesn't sound promising for the future of palliative care, but doctors say it's too soon to render a diagnosis. Slaven believes the rules of supply and demand eventually will prevail.
"I think that slowly it will get better," she says, "because the public will demand better. As the baby boomers get older, they're going to want to die comfortably and not have to spend their entire life savings in their last three weeks to do it. The desire for a better death will hopefully not only push better care, but also better reimbursement."
Further readingFollowing is a list of resources for those interested in palliative care.
BooksDying Well: Peace and Possibilities at the End of Life, by Ira Byock (Riverhead Books).
The Good Death: The New American Search to Reshape the End of Life, by Marilyn Webb (Bantam Books).
The Hospice Handbook: A Complete Guide, by Larry Beresford (Little, Brown and Company).
Managing Death, by James M. Hoefler (Westview Press).
Web sitesAmerican Academy of Hospice and Palliative Medicine - http://www.aahpm.org
American Society for the Advancement of Palliative Care - http://www.asap-care.com
Alicia Potter is a contributing writer to the Boston Phoenix. She can be reached at firstname.lastname@example.org.
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