Johns Hopkins Magazine -- September 1997
Johns Hopkins 
     Magazine Home



Too many Americans spend their final days in the hospital and in unnecessary pain. Remedying that will mean changing the very way doctors and nurses are trained. At Hopkins, that process is already under way.

H E A L T H    A N D    M E D I C I N E

Death Be Not Painful
By Adam Marcus (MA '96)
Photos by Steven Rubin

MEDICINE THESE DAYS is enduring a highly publicized crisis of conscience. Patients in their final weeks of life seem more concerned about dying with dignity than extending their days. The notion almost has judicial fiat. When the Supreme Court in June upheld two state laws banning physician-assisted suicide, the justices raised the importance of palliative care, a testament to its increasing claim on the medical consciousness. What's becoming increasingly clear, however, is how little we know about the dying process. In the past, doctors and nurses were educated with an almost warrior-like mentality: defeat disease before it defeats the body. Some are now re-examining such training and methods in an attempt to define the qualities needed to bring about the "good death." It's partly tilting at windmills. No death is good. But no death need be worse than another, and Johns Hopkins, a name for years synonymous with healing, has begun focusing on making its wards and wings a source of comfort to the dying.

Albert W. Wu's sixth-floor office at the School of Public Health overlooks the old Hopkins Hospital where, nearly a century ago, William Osler conducted the first study of pain in the final days of life. Wu's office may be more modern, but the associate professor of health policy and management is working on the same problem: trying to evaluate how patients die. Osler concluded that the majority of patients who died at Hopkins at the turn of the century did so without much "bodily pain or distress"--a finding most likely linked to the fact that infection, fever, and other complications did not give illnesses time to become chronic.

Indeed, Wu has turned up a much different picture. Wu collaborated with researchers from several other centers, including George Washington University and Beth Israel Hospital in Boston, on a study of some 9,000 individuals, known as SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments). Their findings appeared last January in the Annals of Internal Medicine.

"The Death we fear most is the dying in pain, unnoticed and isolated from loved ones," the researchers noted in the Annals article. So it concerned the authors to learn that of the 46 percent of patients who died during the study, more than half spent their last moments in a hospital. Moreover, about 40 percent of those patients were in either severe or moderate pain for most or all of the last three days of life--pain, the authors argue, that could have been alleviated through medication.

SUPPORT, which was funded by the Robert Wood Johnson Foundation, began in the late 1980s in an attempt to describe the effects of Advance Directives (a terminal-care plan forged by patients in the event that they can't communicate their treatment wishes) and DNRs (a request not to be revived if their heart should stop). The data are so rich, however, that they are now throwing new light into nearly every corner of the dying process.

Patients qualified for the trials if they were over the age of 80, or had one of nine terminal illnesses--including certain cancers, congestive heart failure, coma, cirrhosis, and Multiple Organ System Failure. All patients in the five-center study were assigned nurse practitioners, whose role it was to give prognoses and improve communication among patients, families, and caregivers about end-stage care options.

Some of the participants had family members who agreed to be interviewed about their loved one's experience, and their thoughts formed the backbone of Wu's study. He found that most family members surveyed were pleased with the end-stage care their loved one received. Only one in 10 SUPPORT subjects received improper care, according to their families. Yet nearly half of the 4,100-some patients who died received "extraordinary measures" to keep them alive, including tube feeding, mechanical ventilation, and attempted resuscitation.

Wu: Doctors and patients are vainly "colluding" to deny death.
Here, according to Wu, arises a difficult paradox. Patient and family satisfaction might not be the most reliable measure of care in the case of terminal illness, he says. "That's part of this phenomenon of physicians and patients colluding in this vain attempt to defy death," he says. "They feel good about it because they did everything [they could]. The funny thing is, if we ask what a good death is, it's in a clean bed, with the family around, closing our eyes and drawing a last breath. And that's clearly not what's happening."

Although the nurse practitioners were specifically trained to be sensitive to end-of-life issues, including pain management, patient preferences about care, and how to convey patient wishes to physicians, their presence apparently did little to improve dialogue between the dying and their doctors, Wu says. Physician practices did not seem to change. In most cases, says Wu, patients and their loved ones should have been expecting death soon, but were not. Doctors continued to perform life-saving therapies even as their patients' prognoses worsened, sending the unrealistic message that survival was possible.

"I think that people did not understand that there were many things that they should have been beginning to attend to," says Wu. Calling key relatives and friends to the hospital, for example, is something that too often comes too late, although it can make a tremendous positive difference in a person's final hours or days, he notes.

Sometimes families debate about whether to summon relatives. Delay is a way of blocking out the reality of the imminent death, says Wu. This sort of denial is unfortunate, Wu says, because it deprives the patient of emotional succor. Even worse, pretending optimistically that death is not at hand may lead to treatment decisions that compound pain. Says Wu of the families in SUPPORT, "People were thinking about doing everything possible to prolong life to the exclusion of thinking about what impact that might have on the patient's comfort both physically and emotionally."

Wu and his co-authors believe that end-stage care is not given the respect it deserves in medical training. "It's interesting how we use language," he says. "We talk about heroic measures, extraordinary measures, but most of those words don't have negative connotations. We don't say that people were tormented until they died, but if we're to believe the results of this study, people were in pain until the end."

ON STUART "SKIP" GROSSMAN'S desk sits a computer--a computer that offers him and his colleagues in the Oncology Center a digital means of evaluating the pain of each patient they treat.

"We are making pain control much more of a priority," says Grossman, an associate professor of oncology, medicine and neurosurgery, and the director of Neurooncology. By the time Grossman meets his patients--adults who suffer from primary brain tumors--they are already dying, so pain control is often all he can offer.

Each morning, a nurse on the ward presents to patients a plastic strip with a 10-cm line on it. Patients draw their own line to match the level of pain they feel that day, with 0 being none and 10 being the worst imaginable. The rating is then entered into a computer, and, as Grossman says, "any day before noon I can sit down behind the computer and get the pain ratings of all of the patients in the Oncology Center. It allows us to figure out which patients need some further attention or further evaluation." Getting patients involved is crucial, Grossman has found, because apparently even doctors aren't so good at eyeballing pain. "We did a study in the Oncology Center here looking at whether providers appreciated how much pain their patients had," says Grossman. "What you would hope is that the average of the pain rating from the providers would be similar to that of the patients, but it turns out that there is no statistical correlation between the two." In fact, the only time the estimates matched was when patients reported no pain at all.

Grossman says that one explanation for this finding is that patients tend to hide the severity of their pain from doctors and nurses, who in turn don't pry as deeply as they should. Patients often feel that cancer by definition is painful, so there's no reason to be making a big fuss. They are also concerned that more pain equals more severe disease, and they don't want to distract their caregivers from treating their disease. Still others worry that taking too much medication will render them incoherent.

There are other barriers to providing adequate pain relief. Some physicians, aware that they are under the watchful eye of government drug regulators, have concerns about overprescribing addictive medication-- particularly opioids like morphine. Their fears aren't unwarranted. In 1991, the Pain and Policy Studies Group at the University of Wisconsin surveyed state medical boards on their attitudes about painkillers. The group concluded that boards worried too much about the dangers of addiction and too little about pain management--findings that can explain why physicians have lost their licenses for prescribing narcotics to relieve pain in terminally ill patients.

Caregivers need to discuss with patients whether treating pain could bring death sooner, says Cindy Rushton, an assistant professor of nursing at Hopkins. "Many people are willing to accept that they may die sooner if they are able to die without pain. We know that one of the consequences of giving large doses of a pain medication is that life ends sooner, but in a terminally ill patient, that may be justified."

What's important, says Rushton, is knowing what a patient expects from palliative care, whether the goal is to obliterate pain completely, at the expense of lucidity, or simply manage it to the point of comfort.

Drugs today don't have to be incapacitating or mind-dulling, Wu notes, given recent advances in pain relief, such as patient-controlled anesthetics that can be self-titrated.

Grossman also pins some of the blame for poor pain relief on an institutional mindset that makes it a low priority. He finds a "gross imbalance" between the amount of attention devoted to palliative care in oncology, for example, and the attention given to the newest therapies. "It sends the message that it is more important to be researching a brand new drug than trying to make people more comfortable," he says.

Too often, the mental pain experienced by dying patients also goes unaddressed, Wu and his co-authors found. Dying patients frequently report feelings of intense sadness, depression, and anxiety--in fact, more than 60 percent of the SUPPORT participants had severe emotional symptoms like these, according to their family members. Wu says that those problems are readily treatable--as long as they are recognized.

Many people consider Hopkins's Debra Roter to be one of the nation's authorities on patient-provider communication. The professor of health policy and management at the School of Public Health has some ideas why the SUPPORT study uncovered muddled interactions between doctors and the dying. Crossed wires are especially troublesome with Advance Directives, she says.

Ideally, the process of working out an Advance Directive should allow a physician to explore what a patient is feeling about his or her imminent death, Roter says. Instead, physicians are often too uncomfortable to deal with the subject on an emotional level, so they resort to using a "legalistic script" with their patients. The result? Advance directives that don't accurately reflect patients' wishes, she says.

Roter is currently analyzing audio tapes of about 140 conversations between doctors and patients as part of a study to improve how the two parties communicate when death is imminent, so that patients will truly have informed consent when considering whether to terminate their own care.

"There certainly were a good number of [conversations] where it was clear that the doctor and patient were not on the same wavelength," she says. The physician end of the dialogue often consisted of overdoses of euphemism on the one hand and very technical medical jargon on the other. "It's confusing to patients," Roter says. "They're not sure what the doctor is telling them."

In her study, Roter hopes to identify the essential criteria of the end-stage-care discussion, a list that includes not only providing the cold facts (like what a defibrillator is), but how warm a physician's voice is in explaining what the device does. For, according to Roter, it's crucial that patients not only understand what their doctors are telling them, but that they feel comfortable hearing it. Early results of the study show that the most successful discussions of terminal care occur when doctors allow patients to express their fears, tell their stories, and explain their misgivings.

Part of the problem in communication can be linked to the fact that medical and nursing schools don't do enough to prepare their students to handle end-stage care issues, says Michael Williams, a neurologist and ethics committee member of the university's Bioethics Institute.

End-stage training ought to include hands-on experience, much the way students learn how to put in an IV or perform a surgical operation, Williams contends. He recently received a $200,000, two-year grant from the Kornfeld Foundation (to which the medical school added nearly $140,000 via the Bioethics Institute), to find out just how well he can teach good death etiquette. The study, which he plans to begin this fall with the help of other Hopkins colleagues, will look at two teaching paradigms for attending doctors and nurses: the traditional seminar model--the staple of Hopkins and other medical schools--and the more novel "standardized patient" technique, which uses realistic situations and role playing.

Williams gives an example of how the latter technique can work. Two students, a nurse and a physician, meet with an actress portraying the wife of a comatose patient. In their first consultation, the students "break the bad news" to the distraught spouse. In the second round, the patient's condition has worsened and death is imminent. In this scenario, the patient is a young man, perhaps in his early 30s, and therefore unlikely to have a living will. The students must try to find out whether he had ever discussed his wishes vis-á-vis life support. In the final phase, the patient is diagnosed as brain dead and unrecoverable. The students must now guide his wife to the realization, if it's not already clear, that her husband will not survive, and then discuss the possibility of organ donation.

The process demands sensitivity, says Williams, since when to admit the end "is the sort of decision that many, many [families] are really afraid of."

Patricia Grimm is doing her part to help students at the School of Nursing deal more successfully with end-stage patients. For the last five years, Grimm, an oncology nurse with a PhD in nursing, has taught an elective course on Death and Dying. The seven-week class introduces students to issues ranging from dying young to differences in handling loss. "We don't limit [the discussions] to people who have died--a job, a relationship, moving, these are also losses," says Grimm, whose course usually has a waiting list. "We do a lot of talking about our own losses so that we can understand how we're reacting and hopefully put that aside so that we can be there for the patient."

"Being there" can also include a more metaphysical approach to caregiving. The scientific community is increasingly recognizing links between faith and good health. Several recent studies have shown that strong religious conviction correlates with healthier living and longer life. Still, it has been almost an anathema to teach medical studentsabout spirituality, says Thomas Corson '77 (MD'80, MPH'82), an assistant professor in Pediatrics and Medicine. Corson has spent most of the last 22 years at Hopkins. Training in Asia and Africa, he learned that "it's very hard to care for people unless you have a good sense of what their religious tradition is."

"Traditionally, in a lot of heritages, the concepts of healing the body and the soul were not dichotomized," he says. "Priests were healers. There was an angelic conjunction between divinity and physician." Ignoring this relationship today is poor medicine, says Corson, who has prayed and read Scripture with his dying patients throughout his career. "As we care for people there is still a significant overlap between matters of the soul and matters of the body."

With that in mind, Corson began the first Religion in Medicine course at Hopkins in 1995. Created with the help of the Templeton Foundation, the five-week course--a version of which has now become part of the required upper-level curriculum--encourages future physicians to incorporate their faith into their art. Students learn how to take a patient's spiritual history along with the physical one, how to call on clergy for help, and what science is showing us about the link between religious faith and well-being.

IF SUPPORT UNCOVERED some distressing aspects of dying, it also suggested a few ways to ameliorate them. Foremost, says Wu, is to make hospice care an integral part of end-stage care. Where hospital deaths can be lonely, painful, and sterile, dying at home in private comfort and familiar surroundings can help ease the trauma of life's final passage--and the pain, according to two physicians in the SUPPORT study. They reported that hospices relieved pain in at least 98 percent of cases.

In 1982, Medicare began covering hospice care as a billable service. Since 1985, the number of hospice programs in the United States has jumped from 1,400 to more than 3,000. Today, 20 percent of those near death will choose hospice care, according to the National Hospice Organization. From a financial standpoint, hospice care makes sense: A recent study showed that in the last month of life, the average cost of hospice care for a cancer patient is $3,200 less than traditional hospital care would be.

At Hopkins, hospice care is the dominion of Hopkins Home Health Services (HHS), which was established in 1995 and is jointly owned by the health system and the university. HHS has three subsidiary companies: one for pediatrics care, one for pharmacological and equipment supply, and an in-home care arm for adults: Hopkins Home Care.

Amy Rader, senior director of operations and clinical services for HHS, notes that treatment is purely palliative and is planned and performed by an interdisciplinary team. Rader rattles off the list. "We do nursing, medical social services, spiritual care, social work, home health aid. There's a pharmacist on staff to do pain and symptom management. We have a physician to guide in palliative medicine." HHS usually has 25 caregivers serving 30 to 40 patients.

Hospice nurses visit each patient three to five times weekly. Visits can last anywhere from 45 minutes to several hours, during which time the patient gets hospital-quality care--except extraordinary measures to keep them alive--without a hospital-like atmosphere. Nor does care end when the patient dies. HHS follows families for up to two years afterward.

Since its inception, the hospice company has seen marked growth. It served 130 patients in the first half of 1997, compared to 163 for all of its first year. Rader says that patients and caregivers alike "see the reliability and validity of providing care at home."

Bill Kilgour, 67, will attest to that. His wife, Eleanor, died last January at the age of 65, the same week that the SUPPORT study was released. Her death, while drawn out, was in the end a model of what hospice care can offer.

The first time he saw her in the fall of 1995, Michael Carducci knew that Eleanor Kilgour would die from her disease. She had bladder cancer that had invaded the vagina and lymph nodes. Carducci, an assistant professor of oncology and urology, later discovered tumor cells in her lung and bone cancer in one knee. "At that time I told her that she had a lot of disease, but little, if any, chance of [our] curing it," recalls Carducci. Like every doctor with terminally ill patients, Carducci had to make a choice. He could treat Eleanor Kilgour's tumors, or he could treat Eleanor Kilgour. The choice was clear, he says: "I knew that we weren't going to be able to cure this," he says. "But hopefully we could improve her quality of life."

Eleanor's health deteriorated for a year, and in the fall of 1996 Carducci recommended hospice care--an admission that there was nothing left to do but ease her pain. Eleanor, however, remained adamant that she did not want it. Her husband, ever the faithful nurse, obeyed, though he found himself increasingly overwhelmed by the demands of her disease, which had turned their home into a makeshift infirmary. Eleanor deteriorated rapidly, and around New Year's Day she finally accepted what her doctor and her husband knew signaled the end. "She could have been helped by hospice earlier, but she was very much clinging to life," Carducci says.

Bill Kilgour arranged for a nurse from Hopkins Home Care Group to come to the house. Karen Trageser arrived. "Pain management was the biggest issue in that home," she recalled recently. Eleanor, she says, "had a lot of pain in her bones, so we got her a hospital bed and an air mattress. She was placed on pain medication and we made her comfortable enough to the point where she peacefully passed away." Her husband was at her bedside.

"Hospice nursing isn't a skill that's easily taught," according to Trageser. She herself was never introduced to any terminal care issues in nursing school, and would have been completely in the woods but for a personal tragedy--her father's death from thyroid cancer 14 years ago. "He was not in a hospice program, and I wish he had been," says Trageser, who since has taken courses in hospice care. "He died in the hospital in a great deal of pain. We didn't know what to do. We weren't prepared." Trageser has imported that experience to her practice. "I don't want to see people suffer," she says.

At the Kilgour home, Eleanor's hospital bed is gone now, and Bill Kilgour has turned the living room into something of a small office. The dining room table is covered with bills, the paper trail of Eleanor's passing. "She used to say that she knew she was very sick, and that she wasn't afraid to die," he says softly and through tears. "But then the last three weeks she started telling me that she was afraid, and that I had to be with her. She wanted me to hold her hand all the time. If I had to go to the bathroom she wouldn't let me go. I'd have to pry her fingers off."

Bill Kilgour has nothing but praise for the doctors and nurses at Johns Hopkins who helped him take care of his wife. "They were very honest with everything they did," he says. "Dr. Carducci never said how long she would live or when she would die. 'I'm not God,' he said. Eleanor was grateful because he was so honest. I couldn't do enough for those people," Kilgour says. "I couldn't do enough for them."

Adam Marcus (MA'96) is a freelance writer who lives in Washington D.C.

See "Comfort from a Different Source"