Profiles of PDIA-Funded Researchers and Projects

Eduardo Bruera, M.D.
"If we are going to treat patients properly when they are dying, we need to know their main problems-not from our perspective but from theirs," says Edmonton oncologist Eduardo Bruera, an internationally known palliative care clinician and academic researcher. Bruera notes that a physician or nurse can leaf through a cancer patient's medical chart and find measurements of her blood chemistry, temperature, heart rate, progression of tumor, etc. "But what we can't see in the chart is her suffering," he says. "And if it's not measured, it's easy to ignore. What we are attempting to do is make this suffering very visible so that it becomes one of our priorities."

Scores of patient assessment tools have been devised over the years to give a clearer picture of a dying patient's symptoms, particularly pain. Many of these tools, however, have been used to gather data for medical researchers rather than to improve the care of the patients. Others have been overly broad, or insensitive to capturing changes in the patient's condition, or burdensome to administer. To find out what cancer patients and their families are experiencing, Bruera and his colleagues at the University of Alberta's division of palliative care medicine devised a unique assessment tool which they named the "Integrated Multidimensional Tool Kit." The Multidimensional Tool Kit was designed to be simple, efficient, and versatile. Its check-off lists and questionnaires can be administered quickly by a variety of care givers in any setting-at home, in a hospital, or in a hospice. "If you can spend only 30 minutes with a patient," Bruera says, "then there has to be a way to do the assessment so that's it's incorporated into the patient's regular care." Just like a chart tracking blood pressure, the Tool Kit gives care givers a quick picture of any change in the patient's condition. It can also pick up on links between symptoms, such as whether pain is associated with depression, or whether alcohol use has influenced the effects of a medication. It reflects patient and family problems-whether they are physical such as nausea, spiritual such as doubting God's existence, or financial such as lacking money to pay for medications. The kit tracks responses to the patient's and family's concerns-noting, for example, the dosages of medication administered for nausea, a visit by a priest, or assistance provided in filing an application for financial aid. Bruera and his team are refining and updating their kit and are interested in how it can be adapted for use with non cancer patients. Their latest innovation is computer software to help administrators of health care facilities improve palliative care services. "What kills good ideas is bureaucratic inertia," Bruera points out. "So you need a system that measures things reliably, audits how things are going, and allows everyone to do their work."

Although most cancer patients in Edmonton have access to established palliative care, the tool kit is helping general practice physicians and nurses provide comprehensive palliative care to their terminally ill patients in other areas of Alberta. Bruera, who directs palliative care programs at the Edmonton General Hospital and at a community hospital and health center, says that tool kit materials and software are available at minimal cost to health care providers in other parts of Canada and in other countries.

For more information, please contact: Eduardo Bruera, M.D., Palliative Care ProgramNuns Community Hospital and Health CentreYouville Drive West, Room 4324, Alberta, Canada T6L 5X8

Ira Byock, M.D.
Barbara K. Spring, M.D.
As a hospice physician and medical director, Dr. Ira Byock is only too aware of the difference between a "good" death and a "bad" death, and the fact that the latter far outnumber the former. But instead of working only with the medical profession to reverse this equation, he and gerontologist Dr. Barbara K. Spring set out to engage an entire Montana town in examining the dying process and making it better. The Missoula Demonstration Project: The Quality of Life's End is the most ambitious effort of its kind in the United States. Modeled after a famous long-term heart disease study which collected data on an entire community, the 15-year Missoula Demonstration Project aims not only to improve the quality of life's end in Missoula, but to stimulate other efforts throughout the country. Organized in 1996, and overseen by an international advisory committee, the project is engaged in several studies to understand people's experiences, attitudes, values, customs and concerns about death. By looking at 250 families which experienced a death within a one-year period, for instance, and by gathering data in all health-care settings that treat or care for dying people, researchers hope to create, as Byock puts it, an "intensive, high-definition picture of dying, death and bereavement in Missoula." "Our approach," says Barbara Spring, "is to focus on what people seem to worry about the most-pain, the length of the dying process, isolation, and other things that make them miserable." Because this area has been so neglected in American life, most dying people and their families expect very little palliative care, and as a result, make few demands for better treatment. "One of our objectives is to raise expectations," Spring says.

The conviction that the end of life can be a uniquely meaningful part of life underlies the project. "I've learned from my patients and their families a surprising truth about dying: this stage of life holds remarkable possibilities," Byock says. He elucidates those possibilities in his book, Dying Well: The Prospect for Growth at the End of Life. "I think it is realistic to hope for a future in which nobody has to die alone and nobody has to die with his pain untreated," he adds. Several hundred of Missoula County's 89,000 residents have volunteered to participate in focus groups and task forces. One task force is creating opportunities for dying people to tell their "life stories" to empathetic listeners. "We know that story telling reduces stress, increases satisfaction with one's life, and helps a person to leave his or her legacy," Spring says. This task force is encouraging story telling within health care settings. For example, a volunteer may sit with a cancer patient while she is receiving chemotherapy and encourage her to talk about events, friends, or even pets that touched her life in a significant way. "Although we want the professional care givers to know and understand the process, volunteers, often from the faith community, may do the actual sitting and listening," Spring says. Because remembrance is equally important to mourners, an arts task force is helping bereaved family and friends create tangible images of the loved ones-perhaps using a father's baseball cap, photographs, or other favorite possessions. A number of the participants carried these memorials in the annual Festival of the Dead procession through downtown Missoula, and 35 recently were exhibited at the Art Museum of Missoula.

The "Pain as a Fifth Vital Sign" task force is urging nurses, other health care professionals, and patients and their families to routinely monitor pain. Other task forces are working on advance care planning, integrating complementary therapies into end-of-life care, and exploring the ritualized grieving of various faith groups including Native Americans. "Our goal is to help people move past the awkwardness and discomfort they may feel in the presence of a dying person by offering many ways to support that person in the dying process," Spring says. "People do want to be with loved ones, friends, and neighbors who are dying, but they don't know what to do, especially if someone is in pain or depressed. If we know concrete things we can do-even listening to stories, massaging feet, and reading joke books-then we can be active, supportive participants."

For more information, please contact: Barbara K. Spring, Ph.D. Director, Missoula Demonstration Project East Main Street, Missoula, MT 59802

Betty Ferrell, Ph.D., R.N., F.A.A.N
Only a few years ago, most chronically and terminally ill people would have been cared for by registered nurses in hospitals. Now many are dying at home where ill-prepared family members bear the burden of their care. Families today need help to learn how to care for a dying person, and guidance on how to cope with the most unfamiliar event of allÑthe patient's actual death. The key to addressing this challenge lies in educating home care nurses in palliative care, says nursing research scientist Dr. Betty Ferrell, who with her colleagues at the City of Hope National Medical Center near Los Angeles, developed a curriculum to do just that. Ferrell points out that under current managed care plans, a seriously ill patient may be allowed only two home care visits per week. Nurses must therefore pack a great deal of patient care and family education into these visits. Hospice nurses usually have specialized training in palliative care. However, many families rely on nurses from general home care agencies which employ nurses who may have no formal instruction in palliative care, and who may even be new to home care. The curriculum, developed to improve palliative care within home care, addresses the realities of caring for terminally ill people at home by offering much-needed instruction in how to assess and alleviate pain and other distressing physical symptoms. "Although the hospice movement in the early 1970's called attention to the need to improve pain management, 30 years later we find clinicians still aren't taught how to manage dying patients' pain," Ferrell says. Even though it is fundamental to this kind of care, communicating with dying patients and their families is also slighted in health care education today. The project curriculum teaches nurses not only how to communicate with patients and their families, but how to listen. "A very big issue," Ferrell says, "is how to give bad news and still maintain hope." Perhaps most importantly, the curriculum shows nurses how to prepare families for their loved-one's actual death. "The vast majority of people," Ferrell explains, "have never seen anyone die before. A family may be doing quite well taking care of a terminally ill person," she adds, "but then loses control when the patient is close to death. The family is in a panic because they do not know what to do, and the patient also becomes distressed." If family caregivers haven't planned for the patient's actual death, their first response is to dial 911. Thus the patient who has been successfully cared for at home, perhaps for months, is rushed to a hospital where he or she dies. This response inflates hospital death statistics which indicate that the vast majority of Americans still die in hospitals, even though, in reality, care has shifted back to the home. In today's health care system, where families are being asked to provide increasing amounts of patient care, projects like Ferrell's are critical to improving care of the dying.

For more information please contact: Betty R. Ferrell, Ph.D., R.N., F.A.A.N City of Hope National Medical Centerof Nursing Research and EducationEast Duarte Road, CA 91010:

Gerri Frager, M.D., R.N.
In a recent, highly publicized "mercy killing" case in Canada, Robert Latimer was sentenced to prison for killing his severely disabled 12-year-old daughter. However, both the father and the euthanasia movement received considerable public support after Latimer testified that his "priority was to put her out of her pain" because a physician told him his daughter's suffering could not be relieved. This is the kind of tragedy that Dr. Gerri Frager, a pediatrician and palliative care physician in Halifax, Nova Scotia, is determined to prevent. "It's terrible what the child and family went through," Frager says. "But what we need now is a public discussion about what can be done to relieve pain and suffering rather than a call for euthanasia and physician-assisted suicide. It's important for the public and health care professionals to know that pain can be relieved in the overwhelming majority of cases." Frager, who was a nurse for nine years before going to medical school, consults with physicians and nurses in the Maritime provinces (Nova Scotia, New Brunswick, and Prince Edward Island) on how to manage the pain and other symptoms of severely ill children. She says that dying children usually receive even less palliative care than adults. For example, one study found that only 0.05% of the children who die each year in the United States receive hospice services. According to Frager, if parents must choose between efforts to cure or palliative care, then most seriously ill children will continue to be deprived of palliative care. A mutually exclusive choice is particularly hard to make for children, she explains, because the course of serious diseases and life-threatening disabilities in children can be unpredictable and often can be improved by high-tech interventions. Therefore, Frager contends, all children living with "a life-limiting or significantly life-threatening disease" (which includes cystic fibrosis, congenital dystrophies and progressive neurodegenerative diseases, cancers, and neonatal diseases and disabilities) should be given adequate pain and symptom management to prevent suffering and to relieve the side effects of curative treatments. To help more children, Frager is developing a multidisciplinary pediatric palliative care program for the children of the Maritime provinces of Canada. The program will operate in conjunction with Dalhousie University and the I. W. K. Grace Health Centre in Halifax. Its premise is that children and their families should continue to be cared for by the practitioners who know them best, but with collaborative palliative care support from a team consisting of a physician, a nurse, and a bereavement specialist. Frager hopes that by providing palliative care to sick and dying children whether they are in an acute care hospital, a rural community hospital, or at home, the program will overcome some of the biases that deny pain relief to children and serve as a model for pediatric care elsewhere. "Effective pain relief can be undermined by almost anyone," she says, "even by some pharmacists, physicians, and nurses who may not know much about this, but who say that the use of opioids for pain will lead to addiction. That idea is not supported by research. "Instead of a call for euthanasia," Frager adds, "we need the moral outrage people feel about children suffering directed toward a demand for universal access to expert pain management and palliative care and far more research to improve such care."

For more information please contact: Gerri Frager, M.D., R.N.. W. K. Grace Health Centre for Children, Women and FamiliesUniversity Avenue, Nova Scotia, Canada B3J 3G9

Diane E. Meier, M.D.
In a paper published by the New England Journal of Medicine, Dr. Diane E. Meier and her colleagues described how a 73-year-old man with metastasized lung cancer spent his last month on earth.* In prior medical examinations, he repeatedly made it clear that he wanted no more diagnostic tests or life-prolonging treatments. He emphatically stated that he wanted to be at home. Instead his family took him to an emergency room after the man suffered three grand mal seizures. He was in an acute care hospital for the next 29 days where he was restrained in bed to keep him from removing a nasal feeding tube while doctors, nurses and technicians poked, prodded, and tested. Although exhausted, unable to speak, and in restraints, he managed to keep pulling the tubes out of his nose, only to have them reinserted. On the 29th day, with the ambivalent consent of his family, a feeding tube was inserted through an opening in his stomach. On the 30th day, he died of cardio-pulmonary arrest. Why did this happen, and why do studies show that similar scenarios occur frequently in hospitals? It is not because doctors are callous or uncaring. A bigger factor, the authors note, is: "Most physicians in the United States receive no formal training in palliative care, lack exposure to those who practice palliative medicine, and do not know how to refer their patients to hospice programs." Meier, a geriatrician, cites her own training as an example of what needs to change in medical education. Throughout her years as a medical student, intern and resident in internal medicine and geriatrics, "I did not have a single lecture, discussion, attending rounds, or any other focused effort to educate me in my responsibilities as a physician in the care of my patients as they near the end of life," she says. "The message I got was that this wasn't my responsibility-because if it wasn't taught, then it must not be part of my job. That's a very powerful message."

To send a different message, when Meier and her colleagues began developing a palliative care service at Mount Sinai Medical Center in New York city, they started by recruiting potential role models. Meier says the organizers didn't know what to expect when they sought out experienced, capable and well-liked physicians who would be willing to participate in palliative care faculty development seminars and then serve as "mentors and exemplars" to the younger physicians on the house staff. "We thought we'd be lucky to get 10 or 12 people to respond," Meier says. "In fact close to 40 physicians said they'd be delighted to be a part of this and were relieved to be finally addressing these issues." This core group participated in a twice monthly series of seminars for a year and a half. The seminars started with the nuts and bolts of palliative medicine, such as how to assess and treat pain, prescribe opioids, and treat end-of-life symptoms such as shortness of breath, bowel obstruction, and delirium. Later seminars explored emotional, social, and spiritual concerns of the dying, communication, family bereavement, and the emotions physicians themselves experience when they care for the dying. Only then, in July 1997, did the comprehensive, hospital-wide Palliative Care Clinical Consultation Service officially begin.

Organized out of the department of geriatrics, and led by Meier, the service's interdisciplinary teams consult with and support primary care physicians who are working with dying patients and their families. The service draws upon the expertise of a wide-range of specialists including a nurse and social work coordinator who conduct educational programs for the nursing and social work staffs. Palliative care services at Mount Sinai and elsewhere face continuing challenges. Among these are how to get reimbursed for the extensive contact that dying patients and their families need with their caregivers, how to protect palliative care teams from over-extension and stress, and how to get palliative care accepted into the medical mainstream. As a geriatrician, Meier would like to end the cure vs. care dichotomy that exists in medical culture and extend palliative care services more broadly to older patients who may live a short time or for many years.

* Morrison, R. Sean, Diane E. Meier, and Christine K. Cassel. "When Too Much Is Too Little." New England Journal of Medicine 335.23 (Dec. 5, 1996): 1755-1759.

For more information, please contact: Diane E. Meier, M.D.Care ProgramMount Sinai Medical CenterGustave L. Levy Place, New York, NY, 10029

June Simmons, M.S.W.
Families caring for a patient with late-stage Alzheimer's disease or one of the other terminal dementing diseases face particular kinds of challenges and frustrations. At a certain point, families must make care decisions without the participation of the patient, perhaps not knowing what the patient would have wanted and even without being able to tell what the patient is experiencing. Because of rigid eligibility requirements imposed on hospice programs by the federal government and insurers, families may have no access to the kind of care most appropriate for their loved one. "Hospice was originally dedicated to oncology," says June Simmons, president and CEO of the Visiting Nurses' Association Foundation in Burbank, California, and one of the VNA leaders active in developing hospice care in the United States. She says that requiring a prognosis that death would occur within six months "is an approach to hospice eligibility that didn't really fit Alzheimer's." When families began complaining to the Alzheimer's Association that they were rejected for hospice benefits because of the "unpredictability" of the patient's death, the Association asked the VNA research group to test the reliability of newly defined "hallmarks" of impending death among patients in the late stages of Alzheimer's disease. "We wanted to see if we could remove some barriers to hospice care," says Simmons, who has extensive experience as a clinical social worker and health care administrator. "We studied a small population of late-stage patients and found that there were signs indicating that death would be likely within a certain number of months," she says. "We found physicians could predict death within six months in 75 percent of the cases." This research, describing the physical manifestations of end-stage decline, is helping patients to qualify for hospice care in their homes or in other settings. This, and other research designed by the VNA staff, can help to improve the quality of care by defining what is needed and identifying palliative therapies, such as listening to music, which might ease distress and comfort the patient. The Alzheimer's Association is using this work in educational materials for families and support groups on hospice as an option. While there are indications of impending death, these may come only after a patient has been in a vegetative state for many years.

Simmons says that if families understand the course of dementing diseases they can make critical decisions about how the patient should be treated and cared for. "At a certain point," Simmons says, "a family must decide whether a patient declining into a vegetative state should receive a feeding tube. In the past this has been treated as a medical decision with family participation essentially limited to giving consent. Families didn't realize that a patient with a feeding tube might live curled up in a vegetative state for ten years or more." The Los Angeles County Alzheimer's Association has organized educational programs in which families of late-stage patients describe their experiences to those of more recently diagnosed patients. "This is such a big decision that people have to know what's involved," Simmons says. "They have to understand, for example, that what looks like a compassionate act-inserting a feeding tube into a patient's stomach to nourish them, may actually be force feeding, and that allowing a loved one to die from lack of nutrition is not inflicting a painful death and may be the most compassionate alternative." If these kinds of issues are understood early, patients may be able to make decisions about their future care and legally authorize a health care proxy to carry out their wishes. Regarding these difficult decisions, Simmons says: "We shouldn't object to sustaining life in this situation if we think it is right, but we should know what we're getting into before we do so."

For more information, please contact:June Simmons, M.S.W.and CEO Visiting Nurse Association of Los Angeles, 520 South Lafayette Park Place, Suite 520, Los Angeles, CA, 90057

Wayne Ury, M.D.
While more voices within medicine are calling for better physician education in palliative care, two critical questions must be addressed if education is to become a reality, says internist and psychiatrist Dr. Wayne A. Ury. "These are where do we teach palliative care and how do we teach it?" Ury's answer to the first question is: "On all fronts-in medical school, in residency training, and in continuing education." The answer to the second question is at the heart of Ury's three-year project, funded by PDIA, to create a model palliative medicine curriculum for residents in internal medicine. "Since residents have not been taught these things in medical school," Ury says, "you must treat them as though they are beginning learners in this area. You want to get these basic points across first: pain is bad, patients should not be in pain, and it is the responsibility of doctors to manage pain effectively."

In the first phase of their project, Ury, director of psychosocial training in the Department of Medicine at Saint Vincent's Hospital and Medical Center of New York, and his colleagues, surveyed interns and residents about their education and experience in palliative care. Most had very little or none. Forty percent of the house staff said they had no formal teaching about pain in medical school, and more than 80% rated their skill in managing pain as very low, low, or fair. Almost half of the group said their skills in caring for a dying patient were poor or in need of improvement. Interns (first-year residents), who learn by observing more experienced physicians, reported that they had rarely seen a physician discuss a prognosis with a patient, use a morphine drip to manage pain, or withdraw futile aggressive curative treatments from a dying patient. Physician competency in palliative care depends upon employing effective teaching models and being able to reliably measure competency, says Ury who is on the faculty of the New York Medical College. He devised a curriculum for internal medicine residents that provides both instruction and clinical experience. Then he developed tools to measure whether students had mastered theory and practice in such areas as managing pain and other symptoms, providing artificial nutrition and hydration, giving bad news, communicating with and caring for the family, and working as part of a team in decision making and providing care. The goal, Ury says, is for residents to learn clinically applicable material and to demonstrate clinical competency. To teach the residents, Ury recruited experienced physicians who were good role models and eager to instruct in this area. Ury believes that the most effective way to teach this material is to integrate active, case-based instruction into the existing educational program and culture of the institution.

Since there are so few trained palliative care educators, Ury and his colleagues are developing a series of teacher training handbooks to be used with his curriculum at teaching hospitals throughout the United States. Ury suggests that the development of palliative care in this country also depends upon the willingness of modern physicians to value the skills of the past. "Dramatic advances in medicine have led physicians to base their identity on their ability to use technology to cure patients," he says. "Unfortunately, the advent of technology led to diminished emphasis on the importance of caring. Education in palliative care provides an opportunity for medicine to rediscover human values and skills."

For more information please contact:A. Ury, M.D.Vincent's Hospital and Medical Center of New YorkWest 12th Street, #1B New York, NY 10011

Sarah A. Wilson
In recent years the population of nursing homes has changed dramatically. Once the site of long-term care for frail elderly and severely disabled persons, nursing homes now admit more discharged hospital patients who are close to death. "Nursing homes are now getting very sick patients," says Dr. Sarah A. Wilson, an anthropologist and former hospice nurse who teaches at the Marquette University College of Nursing in Milwaukee. Moreover a recent study indicates that nursing home patients rarely are given pain care. These patients-some of whom cannot express their needs or wishes-may receive a brief physician visit once a month. Their primary caregivers are registered nurses and nursing assistants. However, most nursing home staffs are not taught how to deliver high-quality palliative care to such severely ill patients. To help remedy this situation, Wilson and her colleague, Barbara J. Daley, Ph.D., RN., developed a curriculum titled "Fostering Humane Care of Dying Persons," and wrote a guidebook for nursing home staff development instructors.

Wilson created this curriculum after she and her group interviewed 155 staff members and administrators from 11 Milwaukee-area nursing homes. One thing they discovered is that staff members "overwhelmingly" form strong attachments to residents in their care. "These attachments helped to facilitate a gentle closure to life for those who were dying," Wilson says. Yet few administrators truly understood the grief a caregiver experiences when the patient dies. One nursing assistant said: "It's hard to cope with the loss. I get on the bus and go home and I have no one to talk to about it." Nursing home caregivers said that they needed instruction in how to manage pain, how to communicate with patients and families, and how to respond to patients' spiritual needs. "Nurses needed to know how to manage pain using both pharmacological and non-pharmacological interventions," Wilson says. "Nursing assistants wanted to know what they could do to make someone more comfortable. People identified spiritual care as an important area, but they were unsure about what to do. Sometimes they feel the patient would like them to pray with her, and they want to know, is it okay to do that?" Wilson addressed these issues in the new curriculum and tested its effectiveness at nursing home staff workshops. "The response was very positive," she says. "Some nurses said they used the pain assessment check list when they called physicians. Some used the spiritual interventions. Many became more comfortable talking with dying residents and their families."

Although staff education is important, Wilson points out that factors beyond the control of the caregivers impede humane care for the dying. "All of the caregivers believed that nobody should die alone," Wilson says. "But unfortunately this does happen." Wilson explains that although staff members want to spend more time with dying residents, they have many competing demands for their time. She notes that another problem is the lack of private space in many facilities. One social worker told her group: "Dying becomes almost a public spectacle in the nursing home." Some problems are external to nursing homes. "The public and policy makers need to know that until there are changes in reimbursement policies and regulatory requirements, certain staffing improvements cannot be made," Wilson says. "For example, explicit staff reimbursement should be provided for intensive terminal care." Wilson would like others to use her materials for staff development. "I've been interested in the care of the terminally ill for a long time on both a professional and personal level," says Wilson, who has studied and written about death and dying practices in various cultural settings. "My uncle's death many years ago showed me how important this is," Wilson says. "When I visited him, he was gasping for breath," she recalls. "He had been given nothing for pain and he was leaning over the edge of the bed, unable to lie down. After I made sure he got pain medication, he was much more comfortable. People in this situation need active treatment."

For more information please contact:Professor Sarah A. Wilson, Ph.D., R.N.University College of Nursing 319 P.O. Box 1881, Wisconsin 53201-1881