1
Background and Recommendations

INTRODUCTION

The last half-century produced amazing advances in the treatment and early detection of a few types of cancer and at least modest gains in many others. Yet the reality is that at the beginning of the twenty-first century, half of all patients diagnosed with cancer will die of their disease within a few years. This translates into more than half a million people each year in the United States, and the annual toll will grow as the population ages and more people survive to get cancer over the coming decades.

The imperative in cancer research and treatment has been, understandably, an almost single-minded focus on attempts to cure every patient at every stage of disease. Recognition of the importance of symptom control and other aspects of palliative care from diagnosis through the dying process has been growing, however, and has reached the national health care agenda through the efforts of prominent bodies such as the President’s Cancer Panel, the Medicare Payment Advisory Commission, the Institute of Medicine (IOM), and major health care foundations. All conclude that patients should not have to choose between treatment with curative intent or comfort care. There is a need for both, in varying degrees, throughout the course of cancer, whether the eventual outcome is long-term survival or death.

The goal is to maintain the best possible quality of life, allowing cancer patients the freedom to choose whatever treatments they so wish throughout the course of the disease, while also meeting the needs of patients with



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Improving Palliative Care for Cancer 1 Background and Recommendations INTRODUCTION The last half-century produced amazing advances in the treatment and early detection of a few types of cancer and at least modest gains in many others. Yet the reality is that at the beginning of the twenty-first century, half of all patients diagnosed with cancer will die of their disease within a few years. This translates into more than half a million people each year in the United States, and the annual toll will grow as the population ages and more people survive to get cancer over the coming decades. The imperative in cancer research and treatment has been, understandably, an almost single-minded focus on attempts to cure every patient at every stage of disease. Recognition of the importance of symptom control and other aspects of palliative care from diagnosis through the dying process has been growing, however, and has reached the national health care agenda through the efforts of prominent bodies such as the President’s Cancer Panel, the Medicare Payment Advisory Commission, the Institute of Medicine (IOM), and major health care foundations. All conclude that patients should not have to choose between treatment with curative intent or comfort care. There is a need for both, in varying degrees, throughout the course of cancer, whether the eventual outcome is long-term survival or death. The goal is to maintain the best possible quality of life, allowing cancer patients the freedom to choose whatever treatments they so wish throughout the course of the disease, while also meeting the needs of patients with

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Improving Palliative Care for Cancer advanced disease through adequate symptom control. This goal is not met for most cancer patients in the United States today. We have words for “survivors” and those in active treatment, but even today, those with advanced disease who are not in active treatment and who are dying are nameless and faceless without a priority. For at least half of those dying from cancer—most of them elderly and many vulnerable—death entails a spectrum of symptoms, including pain, labored breathing, distress, nausea, confusion and other physical and psychological conditions that go untreated or undertreated and vastly diminish the quality of their remaining days (Donnelly and Walsh, 1995; Phillips et al., 2000). The patient is not the only one who suffers during the dying process. The impact on families and caregivers is still poorly documented, but evidence has begun to be collected demonstrating a heavy and mostly unrelieved emotional and financial burden (Emanuel et al., 2000b). This cannot be ignored within the context of caring for people who are terminally ill. A major problem in palliative care is the underrecognition, underdiagnosis, and thus undertreatment of patients with significant distress, ranging from existential anguish to anxiety and depression. This situation continues to exist despite the fact that when dying patients themselves have been asked their primary concerns about their care, three of their five concerns were psychosocial: (1) no prolongation of dying; (2) maintaining a sense of control; and (3) relieving burdens (conflicts) and strengthening ties (Singer et al., 1999). All this is true at the same time that one-quarter of Medicare dollars are spent in the last year of life, and half of that is spent in the last month of life. Living with, and eventually dying from, a chronic illness runs up substantial costs for patient, family, and society, and costs for those dying from cancer are about 20 percent higher than average costs (Hogan et al., 2000). Dying patients are sick, dependent, changing, and needy. Most likely, high costs would be acceptable if patients and families were satisfied with the care provided for those with advanced disease, but few can count on being satisfied. In short, our society is spending a great deal and not getting what dying cancer patients need. The current inadequacy of palliative and end-of-life care springs not from a single cause or sector of society, but from institutional and economic barriers, lack of information about what can be achieved, lack of training and education of health care professionals, and minuscule public sector investments in research to improve the situation. This is not to suggest that there is no ongoing research on relevant questions or training programs— there are—but the efforts are not coordinated, and there is no locus for these activities in any federal agency. What has resulted is underfunding, a

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Improving Palliative Care for Cancer lack of appropriate training, and a lack of research leadership, with no sustained programs for developing and disseminating palliative treatments. Despite the enormous health care expenditures for the dying, less than 1 percent of the National Cancer Institute (NCI) budget is spent on any aspect of symptom control, palliative care, or end-of-life research or training. WHAT IS PALLIATIVE CARE? The World Health Organization (WHO) defines palliative care in cancer as the “active total care of patients whose disease is not responsive to curative treatment.” The definition is extended in an important way with the statement, “Many aspects of palliative care are also applicable earlier in the course of the illness, in conjunction with anticancer treatment” (WHO, 1990). Palliative care focuses on addressing the control of pain and other symptoms, as well as psychological, social, and spiritual distress. In its recommendation to member governments, WHO states that any national cancer control program should address the needs of its citizens for palliative care. This National Cancer Policy Board report adopts the WHO definition and position, focusing on the importance of palliative care beginning at the time of a cancer diagnosis and increasing in amount and intensity throughout the course of a patient’s illness, until death. In a practical sense, 6 major skill sets comprise complete palliative care: communication, decisionmaking, management of complications of treatment and the disease, symptom control, psychosocial care of patient and family, and care of the dying. Some of these skills—communication, decisionmaking, psychosocial care of patient and family—are important throughout the trajectory of illness. Others emerge and recede in importance at different times. Treatment and prevention of complications caused by primary cancer treatments are generally episodic, though some require long-term management. Disease complications may require a variety of interventions (including surgery and radiation) that, for many, do not fit neatly into a palliative care definition. The need for symptom control unrelated to treatment generally increases as a person approaches death, but at least for some patients, it begins much earlier. Symptom control is never, however, a substitute for primary cancer care that is desired by a patient.

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Improving Palliative Care for Cancer INTENT OF THIS REPORT The National Cancer Policy Board (NCPB) recognized that excellent palliative care is possible but is not being delivered to a large number of those living with and dying from cancer. In its 1999 report Ensuring Quality Cancer Care, one of the Board’s recommendations was: Ensure quality of care at the end of life, in particular, the management of cancer-related pain and timely referral to palliative and hospice care. The current report delves into and expands on that mandate, addressing not only what can be done for people now nearing the end of life, but also setting a course for the development of better treatments and better ways of delivering and paying for them. This report also takes forward the agenda outlined in an influential 1997 IOM report Approaching Death: Improving Care at the End of Life, the first comprehensive, evidence-based, national report on these issues, which stimulated widespread interest and progress in some aspects of care for the dying. With the 1997 and 1999 reports as backdrop, the current effort focuses on specific areas in which the Board believes action still has to be catalyzed. To accomplish this, eight papers were commissioned, which comprise Part II of this report. This chapter summarizes the current state of affairs, drawing on those papers and other sources, and ends with a set of broad-based recommendations supported by the evidence supplied in the commissioned papers. The papers themselves should be consulted for many more suggestions of specific activities and actions to be considered. The titles and authors are as follows: Chapter 2: Reliable, High-Quality, Efficient End-of-Life Care for Cancer Patients: Economic Issues and Barriers, Joanne Lynn and Ann O’Mara Chapter 3: Quality of Life and Quality Indicators for End-of-Life Cancer Care: Hope for the Best, Yet Prepare for the Worst, Joan M.Teno Chapter 4: The Current State of Patient and Family Information About End-of-Life Care, Aaron S.Kesselheim Chapter 5: Palliative Care for African Americans and Other Vul nerable Populations: Access and Quality Issues, Richard Payne Chapter 6: End-of-Life Care: Special Issues in Pediatric Oncology, Joanne M.Hilden, Bruce P.Himelstein, David R.Freyer, Sarah Friebert, and Javier R.Kane Chapter 7: Clinical Practice Guidelines for the Management of Psychosocial and Physical Symptoms of Cancer, Jimmie C.Holland and Lisa Chertkov Chapter 8: Cross-Cutting Research Issues: A Research Agenda for Reducing Distress of Patients with Cancer, Charles S.Cleeland

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Improving Palliative Care for Cancer Chapter 9: Professional Education in Palliative and End-of-Life Care for Physicians, Nurses, and Social Workers, Hellen Gelband This report focuses exclusively on deaths from cancer, despite the fact that the number of people in the United States dying from other chronic diseases exceeds the number dying from cancer. Many of the issues raised and recommendations made in the report should benefit people dying from all these conditions, and it is not the NCPB’s intent to divert attention from the many people dying from congestive heart failure, kidney disease, or other diseases. There is a logic, however, to looking at cancer deaths alone, aside from the obvious point that this report is a product of the National Cancer Policy Board. Cancer has been the “prototype” disease for organizing end-of-life care for several reasons: it has a more predictable trajectory from the point at which cure becomes unlikely until death than other chronic diseases; the most frequent and distressing symptoms are similar for many forms of cancer; there is a nationwide infrastructure of cancer centers carrying on cancer research, treating a significant minority of patients, and influencing the practice of oncology across the country; and the most generously funded of the National Institutes of Health (NIH) —NCI, approaching $4 billion in 2001—is focused on cancer. This report points out deficiencies in the way patients with advanced cancer are treated, but this does not signify that oncology is behind other medical disciplines in palliative care in general or in care for dying patients. In fact, the cancer establishment has played a leading role in the area of pain management, using the cancer patient with pain as a model for other conditions and developing national guidelines and educational initiatives. Hospice care also developed around the needs of advanced cancer patients in close association with the cancer establishment. With that head start, cancer professionals are poised to take the lead in other areas of symptom control and the organization and delivery of excellent palliative care. BARRIERS TO EXCELLENT PALLIATIVE AND END-OF-LIFE CARE Barriers throughout the health care and medical research systems stand in the way of many people receiving effective palliative care where and when they need it. These barriers include the separation of palliative and hospice care from potentially life-prolonging treatment within the health care system, which is both influenced by and affects reimbursement policy; inadequate training of health care personnel in symptom management and other palliative care skills;

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Improving Palliative Care for Cancer inadequate standards of care and lack of accountability in caring for dying patients; disparities in care, even when available, for African Americans and other ethnic and socioeconomic segments of the population; lack of information resources for the public dealing with palliative and end-of-life care; lack of reliable data on the quality of life and the quality of care of patients dying from cancer (as well as other chronic diseases); and low level of public sector investment in palliative and end-of-life care research and training. Separation of Palliative and Hospice Care Within the Health Care System A major barrier to adequate palliative care has been the institutionalization of a system that focuses on either active therapy or palliative or hospice care and does not allow the appropriate interface between these two approaches. Lynn and O’Mara (Chapter 2) describe the ways in which this split is reinforced by the rules governing hospice care under the Medicare program, the largest payer of care for dying Americans. In addition, Holland and Chertkov (Chapter 7) describe the lack of attention to psychosocial, existential, and spiritual needs even when palliative care is available, and Payne (Chapter 5) describes the unequal access and even poorer treatment often afforded African Americans and other special population groups. Hospice is the most substantial innovation to serve dying Americans, and for most, it is paid for by the Medicare hospice benefit (using a per diem rate), which was created in 1982. Hospice services—which are predominantly home based—include many elements that are not typically part of Medicare coverage (e.g., an interdisciplinary team, care planning, personal care nursing, family and patient teaching and support, chaplaincy, medication [with a small copayment], medical equipment and supplies, counseling, symptomatic treatment, bereavement support). However, Medicare allows hospice enrollment only for patients with a “prognosis of less than six months” and it is only with difficulty that hospices deal with documentation requirements for longer stays. These requirements ensure that hospice enrollment is seen as a decision to pursue a death-accepting course, which is an obvious deterrent for many patients. Furthermore, hospices are prohibited from offering any of their services to patients who are not formally enrolled, but who might benefit from some aspects of hospice care. In recent years, more than 60 percent of patients who have enrolled in the Medicare hospice benefit have had cancer, and more than half of all dying cancer patients have used some hospice services (Hogan et al., 2000). The creation of the Medicare benefit was a major step forward, but its strict

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Improving Palliative Care for Cancer and limiting rules have led to inappropriately short stays of patients in hospice care, depriving them of the full application of palliative care in the final days of their lives. The interface of hospice services and nursing home care is also unsettled. Nursing home stays are reimbursed by Medicare for only a minority of patients, but for these patients, Medicare reimbursement is high enough that they are unlikely to be offered the opportunity to enroll in hospice (only either skilled nursing home care or hospice can be in effect at one time). Since most nursing home stays do not qualify for Medicare payment, patients in nursing homes are often eligible for hospice services, but administrative complications deter enrollment for a large proportion of them. The hospice requirement of a “six-month” prognosis has never been defined and is the source of trouble. Is the “just barely qualified” patient simply “more likely than not” to die within six months, or should that patient be “virtually certain to die”? This may seem like an arcane issue, but the population of everyone who is more likely than not to die within six months is two to three orders of magnitude (100 to 1,000 times) larger than the population that is virtually certain to die. The uncertainty of definition affects the willingness of hospices to accept patients who might stabilize and live a long time. Well-publicized fraud investigations for long-stay hospice patients (e.g., Lagnado, 2000, in the Wall Street Journal) have increased the chances that these patients, who are chronically ill and have benefited from hospice care, are likely to be discharged. A number of other issues that affect access to and use of hospice services cause concern for patients and hospice providers. Hospices have significant latitude in deciding what services to offer, and they can vary tremendously, so patients are faced with selecting among them to find the best fit. Hospices are bedeviled with short stays, which have gotten shorter in recent years (from an average of 90 days in 1990 [Christakis and Escarce, 1996] to 48 days in 1999 [National Hospice and Palliative Care Organization, 2000]). No reliable research has yet sorted out the sources of increasingly short stays, but the financial impact on hospices has been substantial. The first day or two and the last few days in hospice are always costly. When these days come close together, there can be too few “stable” days with lower costs to offset losses on the “expensive days.” Hospices struggle with a plethora of developments in palliative care. Twenty years ago, it was not much of an exaggeration to claim that the hospice physician could do most everything with little more than cheap opioid medications, steroids, diuretics, and antibiotics. Now, there are more technologically advanced interventions, more expensive medications, more use of radiation or surgery, and so on—and additional costs of keeping hospice staff trained in their use—yet the Medicare hospice payment is a fixed amount per day. Some hospice programs rely on philanthropic dona-

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Improving Palliative Care for Cancer tions to cover expensive interventions that they would not otherwise be able to offer. Not everyone dying of cancer is covered by Medicare. The special case of children, analyzed by Hilden and colleagues (Chapter 6), demonstrates severe problems in securing and being paid for adequate palliative care through private insurers. Holland and Chertkov (Chapter 7) add that reimbursement for professional psychosocial care is poor to absent even in major cancer centers and is often excluded from medical and behavioral health contracts. Some small-scale innovative demonstration projects are under way to test new ways of providing and paying for good palliative care throughout the course of fatal illness (e.g., see Box 1-1), but it is too soon to recommend a comprehensive set of changes (particularly for Medicare) without further experience, experimentation, and evaluation. A period of innovation, with thoughtful evaluation and learning, is needed in order to shape the care system and payment arrangements that would better serve cancer patients coming to the end of life. Inadequate Training of Health Care Personnel Most U.S. physicians—oncologists, other specialists, and generalists alike—are not prepared by education or experience to satisfy the palliative care needs of dying cancer patients or even to help them get needed services from other providers (Emanuel, personal communication). The same holds for the other mainstays of end-of-life care: nurses and social workers. In a review of the education and training of professionals, Gelband (Chapter 9) reports that this finding is consistent with the lack of funding for end-of-life or palliative care educational initiatives, which has begun to change only recently. Needs in training and education were covered in depth in the IOM (1997) report Approaching Death, and some of the new programs have taken root from that report. Even in 2000, however, the programs are small and funded largely by private grant-making organizations, with little contribution by the federal government. Holland and Chertkov (Chapter 7) attribute much of the difficulty that patients find in getting adequate treatment to the fact that there are no training standards to prepare physicians to identify patients with distress, nor are there standards of competence for those who provide psychosocial and spiritual services at the end of life. Most new physicians leave medical school and residency programs with little training or experience in caring for dying patients. In most cases, a few lectures are folded into other courses (in many cases in psychiatry and behavioral sciences, ethics, or the humanities). A few schools offer full-length courses on palliative care, but they are nearly all electives. Contact

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Improving Palliative Care for Cancer BOX 1-1 Promoting Excellence in End-of-Life Care— The Robert Wood Johnson Foundation Typically, patients with incurable cancers do not receive palliative care in the form of hospice until all life-prolonging options have been exhausted, often within just two weeks of death. As part of its “Promoting Excellence in End-of-Life Care” program, the Robert Wood Johnson Foundation began, in 1999, funding three-year demonstration projects at four cancer centers around the country to test innovative, integrated models of palliative and cancer care. The projects, located in Michigan, New Hampshire, Ohio, and California, are independent and are organized differently, but with common themes. Using approaches designed to fit within their particular health systems, each project is striving to incorporate palliative care within the continuum of cancer treatment from diagnosis through the trajectory of illness, extending to bereavement support for patients’ families. Interdisciplinary teams, which may include physicians, nurses, social workers, and pastoral care providers, respond to the needs of patients and families. Emphasis is accorded communication, advance care planning, symptom management, and coordination of medical and support services. Disease-modifying therapy is provided, including available NCI clinical trials. Patients with advanced cancer, or those whose cancers are deemed incurable at onset, are eligible for enrollment in these demonstrations. Project evaluation focuses on the feasibility and acceptability of these new models to patients, their families, and the collaborating local health systems. Outcome measures include clinical parameters of longevity, symptom frequency and severity, patient-family satisfaction, and quality of life. Utilization of resources, including hospitalizations, intensive care unit admissions, use of hospice services, and hospice lengths of stay, are also being studied. A key to all of the programs is laying out options for care at an earlier stage of illness than usually occurs. Particularly important is avoiding the “terrible choice” that the health care system now imposes between potentially life-prolonging treatment and pure palliative care (“active” treatment versus “hospice”) and to smooth the transition from one to the other when necessary. Brief descriptions of the programs and some early results are presented here. 1. The Palliative Care Program—University of Michigan Comprehensive Cancer Center Researchers at the University of Michigan’s Comprehensive Cancer Center, in conjunction with Hospice of Michigan, are integrating hospice services into the care of patients with advanced breast, prostate, or lung cancer or advanced congestive heart failure, while potentially life-prolonging treatment continues. They are conducting a randomized trial that follows on a pilot study involving patients with advanced prostate cancer, which found improvements in patient comfort and satisfaction when palliative care was provided concomitant with disease-modifying treatments. According to Dr. Kenneth J.Pienta, a principal investigator for the project, “Within this new system, the patient and family can appropriately begin the process of transition and we can provide an opportunity for patients and families to grow through the end of life.”

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Improving Palliative Care for Cancer In the first year, 84 patients enrolled in the trial. In this early group, no overall difference is seen in standard quality-of-life measures two months after enrollment, but for those who functional status was poorer to begin with (Karnofsky score d70), the program appears to have improved quality of life in the intervention group compared with the usual care group, with the suggestion of a greater effect over time. 2. Project ENABLE: Educate, Nurture, Advise, Before Life Ends— Dartmouth-Hitchcock Medical Center The Dartmouth-Hitchcock Medical Center’s ENABLE Project team has moved high-quality end-of-life care into New Hampshire’s regional cancer center and beyond, into three rural communities. The ENABLE team assesses patients’ needs and provides continuous palliative care throughout the course of cancer care. Patient education is a priority. The team travels to each town with a unique educational seminar, “Charting Your Course: A Whole Person’s Approach to Living with Cancer,” empowering cancer patients and their families to better navigate the health care system, engage in advanced care planning, and extending support to those confronting issues of life completion and closure. The goal is to help people retain control of their lives and key decisions. Following diagnosis, a palliative care coordinator works with patients and families to develop a care plan, stressing continuity of care during the course of the illness. Each of the three communities has a palliative care team, consisting of a pain management specialist, a psychiatrist or psychologist, a hospice or home health liaison, a social worker or case manager, and a pastoral caregiver. Each team tailors its work to the specific health care system in the community. “Project ENABLE will allow us to demonstrate that, regardless of geographic location, cultural identification, or clinical sophistication, patients need not be abandoned when a cure for their disease seems no longer possible,” said E.Robert Greenberg, M.D., principal investigator for the project. One early indication of the program’s success at merging the cultures of hospice and oncology treatment is the commitment shown by six staff oncologists in sitting for—and passing—the certification exam in palliative medicine. 3. Project Safe Conduct—Ireland Cancer Center, Case Western Reserve University Case Western Reserve University Hospitals of Cleveland has literally invited the palliative team into the Ireland Cancer Center. The Project Safe Conduct team’s office is in the same building, and each member of the team wears an Ireland Cancer Center nametag. The team attends staff orientations and meets regularly with the therapeutic staff. Physician acceptance of the program is high, and patients have been recruited to the program faster than anticipated. This collaboration between the cancer center, Hospice of the Western Reserve, and Case Western Reserve University creates a system that allows patients to receive life-prolonging care—including experimental therapy protocols—integrated with palliative care. In Project Safe Conduct, patients and families are guided through the

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Improving Palliative Care for Cancer labyrinth of available treatments and services, emphasizing state-of-the-art symptom management as well as psychosocial and spiritual support. Early results are encouraging. In the first year, 133 patients were enrolled, of whom 40 percent were members of ethnic or racial minorities. Pain assessment has been documented in 100 percent of Safe Conduct patients, compared to a historical control of just 3 percent. Quality-of-life scores remained steady or improved in Safe Conduct patients, despite concomitant decline in functional status. At baseline, only 13 percent of the center’s patients were served by hospice and for an average of just 3 days before death. Now, only 18 months into the Safe Conduct Project, more than 80 percent of Ireland’s patients have the benefits of hospice care, achieving an average length of stay of 18 days. As part of the effort, Project Safe Conduct is also developing innovative palliative care curricula for the Case Western Reserve Schools of Medicine and Nursing, as well as postgraduate training for specialists in oncology. 4. Improvements in End-of-Life Care for Selected Populations—University of California-Davis Cancer Center Researchers at the University of California-Davis (UC Davis) Medical Center and the West Coast Center for Palliative Education, Sacramento, California, have developed the Simultaneous Care project to extend palliative care to patients undergoing active, anticancer treatments (who would otherwise be ineligible for hospice care). In Simultaneous Care, palliative care staff work together with clinical oncologists to serve patients with advanced cancer, including those participating in experimental treatment protocols. In early results, quality of life as measured by the FACT (Functional Assessment of Cancer Therapy) shows a clear trend toward improvement for Simultaneous Care patients compared to patients receiving best customary care. There has also been a greater adherence to chemotherapy protocols for Simultaneous Care patients, a higher percentage of referrals to hospice, and improved length of stays in hospice. Finally, preliminary data suggest that the distress experienced by primary caregivers may be reduced, both during the illness and after the patient’s death. In another aspect of this project, some of California’s hardest-to-serve populations are also being reached. The program expands and improves the level of palliative care available to people in three isolated, rural areas—Colusa, Tuolumne, and Plumas Counties—as well as the state women’s prison population. According to the project’s principal investigator, Dr. Frederick J.Meyers, although they are dissimilar in many ways, each of the targeted populations lacks access to palliative or hospice care. In this project, palliative care experts have trained teams of health providers to work in the rural counties and to use teleconferencing links to UC Davis physicians for immediate assistance in the care of dying patients. Using remote television, UC Davis physicians consult with patients and offer suggestions for care. In a third component of the project, staff are working with California Department of Corrections and health care teams in the women’s prison to offer palliative care training and begin development of a prison hospice program to serve inmates who are dying.

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Improving Palliative Care for Cancer Emanuel EJ, Fairclough DL, Slutsman J, Emanuel LL. Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers. Ann Intern Med 2000b Mar 21; 132(6):451–459. Ferrell B, Virani R, Grant M, et al. Beyond the Supreme Court decision: nursing perspectives on end-of-life care. Oncology Nursing Forum 2000; 27(3):445–455. Freeman HP, Payne R. Racial injustice in health care. New England Journal of Medicine 2000; 342:1045–1047. Hilden JM, Emanuel EJ, Fairclough DL, Link MP, Foley KM, Clarridge BC, Schnipper LE, Mayer RJ. Attitudes and practices among pediatric oncologists regarding end-of-life care: results of the 1998 American Society of Clinical Oncology survey. JCO 2001; 19: 205–212. Hogan C, Lynn J, Gabel J, Lunney J, O’Mara A, Wilkinson A. 2000 A statistical profile of decedents in the Medicare program. Washington, D.C., Medicare Payment Advisory Commission. Hudgings C. National Institute on Nursing Research, personal communication to Hellen Gelband, 2000. Institute of Medicine (IOM). 1997. Approaching Death: Improving Care at the End of Life, Field MJ, Cassel CK, eds. Washington, D.C.: National Academy Press. IOM. 1999. Ensuring Quality Cancer Care, Hewitt M, Simone JV, eds. Washington, D.C.: National Academy Press. IOM. 2000. Enhancing Data Systems to Improve the Quality of Cancer Care, Hewitt M, Simone JV, eds. Washington, D.C.: National Academy Press. Joint Commission on Accreditation of Healthcare Organizations. Background on the Development of the Joint Commission Standards on Pain Management, July 31, 2000. JCAHO Web site, http://www.jcaho.org/trkhco_frm.html. Lagnado L. Rules are rules: hospice’s patients beat the odds, so Medicare decides to crack down—terminally ill who don’t die within a 6-month period risk losing coverage—Al Ouimet’s 9-year survival. Wall Street Journal June 5, 2000. Medicare Payment Advisory Commission (MedPAC). 1999. Report to the Congress: Selected Medicare Issues. Washington, D.C.: MedPAC. MedPAC. 2000. Medicare Beneficiaries’ Costs and Use of Care in the Last Year of Life. Washington, D.C.: MedPAC. Morrison RS, Wallenstein S, Natale DK, et al. “We don’t carry that” —failure of pharmacies in predominantly nonwhite neighborhoods to stock opioid analgesics. New England Journal of Medicine 2000; 342:1023–1026. NHPCO (National Hospice and Palliative Care Organization). Facts and figures on hospice care in America. NHPCO Web site, January 10, 2001. www.nhpco.org. Pfeifer MP, et al. The discussion of end-of-life medical care by primary care patients and physicians: a multicenter study using structured qualitative interviews. Journal of General Internal Medicine; 1994; 9(2):82–88. Phillips RS, Hamel MB, Covinsky KE, Lynn J. Findings from SUPPORT and HELP: an introduction. Journal of the American Geriatrics Society 2000; 48:S1–S5. President’s Cancer Panel. 1998. Cancer Care Issues in the United States: Quality of Care, Quality of Life. NCI Web site, http://deainfo.nci.nih.gov/ADVISORY/pcp/pcp97-98rpt/pcp97-98rpt.htm#letter. Schroeder SA. The legacy of SUPPORT. Annals of Internal Medicine 1999; 131(10):780–782. Singer PA, Martin DK, Kelner M. Quality end of life care—patients’ perspectives. JAMA 1999; 281:163–168. SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. JAMA 1995; 274(20):1591–1598. World Health Organization. 1990. Cancer Pain Relief and Palliative Care. World Health Organization Technical Report Series 804. Geneva.

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Improving Palliative Care for Cancer APPENDIX 1A TABLE 1A-1 NCI Funding for Palliative Care Research: Specific Projects, Fiscal Year 1999 Total Project $ Percenta $ Relevant to Palliative Care Project Titleb 603,532 100 603,532 Inhibition of Postoperative Gynecological Adhesions 364,549 100 364,549 Intelligent Knowledge Base for Cancer Pain Treatment 367,610 100 367,610 Diana2 Computer-Based Teaching of Elder Care 153,918 100 153,918 Palliative Training for Caregivers of Cancer Patients 133,702 100 133,702 Patterns Care for Cancer Patients at End of Life 103,382 100 103,382 Home Based Moderate Exercise for Breast Cancer Patients 117,792 100 117,792 Stress of Cancer Caregiving—Analysis and Intervention 602,537 100 602,537 Family Home Care for Cancer—A Community Based Model 70,464 100 70,464 Clinical Management of Cancer Pain in US Nursing Homes 500,685 100 500,685 Pain Measurement in Bone Marrow Transplantation 162,671 100 162,671 Method for the Analysis of Pain Clinical Trials

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Improving Palliative Care for Cancer Total Project $ Percenta $ Relevant to Palliative Care Project Titleb 413,030 100 413,030 Laboratory Studies of Pain Control Methods 292,011 100 292,011 Cost Effectiveness of Lung Cancer Chemotherapy 360,637 100 360,637 Comparison of Psychosocial Intervention in Breast Cancer 498,233 100 498,233 Self Care Intervention to Control Cancer Pain 540,262 100 540,262 Breast Cancer—Preparing for Survivorship 175,615 100 175,615 Recycling of Urea Nitrogen in Cancer Cachexia 203,436 100 203,436 Adjustment to Breast Cancer 248,889 100 248,889 Clinical Investigations in Hodgkin’s Disease 588,097 100 588,097 Cancer Pain and Its Management 1,205,625 100 1,205,625 Maximizing the Therapeutic Index of Childhood ALL 1,778,647 100 1,778,647 CCSP in Head and Neck Cancer Rehabilitation 8,747 100 8,747 Feasibility of Physioacoustic Therapy in Cancer Care 405,116 100 405,116 Pain and the Defense Response 79,000 100 79,000 Home Care Training for Younger Breast Cancer Patients 358,290 100 358,290 A Simulator to Teach Therapeutic Communication Skills 412,812 100 412,812 Facilitating Positive Adaptation to Breast Cancer 416,067 100 416,067 Enhancing Recovery from Blood and Marrow Transplantation 451,385 100 451,385 Computerized Pain Report and Nursing Pain Consult Protocol 350,015 100 350,015 Item Banking and Cat for Quality of Life Outcomes 50,000 100 50,000 Menopausal Symptom Relief for Women with Breast Cancer 100,000 100 100,000 Exercise and Quality of Life in Women with Breast Cancer 99,975 100 99,975 Self Advocacy and Empowerment for Cancer Patients 100,000 100 100,000 Apoptosis Inhibitor for Alopecia Due to Cancer Therapy 99,805 100 99,805 Skin Patches for AIDS Patients 12,405 100 12,405 CCG Nursing Workshop—Challenges in CCG Nursing 74,918 100 74,918 Stress Reduction for Women with Breast Cancer

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Improving Palliative Care for Cancer Total Project $ Percenta $ Relevant to Palliative Care Project Titleb 347,423 100 347,423 Gender Differences in Opioid Analgesia and Side Effects 363,294 100 363,294 Exercise—An Intervention for Fatigue in Cancer Patients 280,410 100 280,410 Cognitive Behavioral Aspects of Cancer Related Fatigue 404,999 100 404,999 Computerized Symptom Report Consult for Cancer Patients 328,624 100 328,624 Endothelin 1 Induced Pain and Metastatic Prostate Cancer 270,936 100 270,936 A Caregiver Intervention to Improve Hospice Outcomes 1,999,999 100 1,999,999 Center for Psycho-oncology Research 249,986 30 74,996 Longitudinal Quality of Life After Marrow Transplant 1,645,030 30 493,509 Epithelial Ovarian Cancer Program Project 2,441,974 30 732,592 Fluorescence Spectroscopy for Cervical Neoplasia 10,000 25 2,500 HIV, Leukemia, and Opportunistic Cancers 584,213 20 116,843 New Approaches to Brain Tumor Therapy CNS Consortium 98,456 20 19,691 New Approaches to Brain Tumor Therapy CNS Consortium 290,809 20 58,162 Synthetic Studies on Tumor Promoters and Inhibitors 14,883 20 2,977 Technical Requirements for Image Guided Spine Procedures 1,578,050 15 236,708 National Black Leadership Initiative on Cancer 250,641 15 37,596 Quality of Life of Gynecologic Cancer Survivors 284,633 15 42,695 Prophylactic Mastectomy in Hereditary Breast Cancer 270,273 5 13,514 Depression, HPA Function and Smoking Abstinence in Women TOTAL   $18,331,326   NOTE: ALL=acute lymphocytic leukemia; CCG=Cancer Center Grant; CCSP=Cancer Control Science Program; CNS=central nervous system; HPA hypothalamic-pituitary-adrenal. aNCI estimate of percent of total relevant to palliative care bGrant numbers, principal investigators, and specific institutions have not been listed in this table. SOURCE: Colbert, 2000.

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Improving Palliative Care for Cancer TABLE 1A-2 NCI Funding for Palliative Care Research: Institutional Grants, Fiscal Year 1999 Total Project $ Percenta $ Relevant to Palliative Care Project Titleb 1,427,579 21.20 302,647 Great Lakes Regional Center for AIDS Research 1,682,639 21.20 356,719 Robert H Lurie Cancer Center 1,451,421 18.02 261,546 Cancer Center and Research Institute 554,090 10.63 58,900 University of Texas MD Anderson CCOP Research Base 781,064 10.37 80,996 Cancer Center Support Grant (CCSG) 2,018,050 10.00 201,805 SPORE in Breast Cancer 2,449,134 10.00 244,913 Bay Area Breast Cancer Translational Research Program 947,107 10.00 94,711 Cooperative Core Lab and Clinical Nutrition Research Unit 2,671,424 10.00 267,142 SPORE in Breast Cancer 409,734 8.23 33,721 Comprehensive Cancer Center—Wake Forest University Research Base Grant 1,182,855 6.11 72,272 ECOG CCOP Research Base 271,255 6.07 16,465 Scottsdale Community Clinical Oncology Program 209,774 6.07 12,733 San Juan Minority-Based Community Oncology Program 212,744 6.07 12,914 Cedar Rapids Oncology Project 199,707 6.07 12,122 Geisinger Clinical Oncology Program 262,463 6.07 15,932 Illinois Oncology Research Association CCOP 252,539 6.06 15,304 CCOP 218,728 6.06 13,255 Oklahoma CCOP 881,850 6.06 53,440 Metro Minnesota CCOP 359,450 6.06 21,783 Kalamazoo CCOP 481,448 6.06 29,176 Northern New Jersey Community Oncology Program 108,209 6.05 6,547 University of Michigan CCOP Research Base 455,553 6.05 27,561 CCOP—Colorado Cancer Research Program 269,121 6.05 16,282 Mainline Health CCOP 350,001 6.05 21,175 Toledo CCOP 424,715 6.05 25,695 Marshfield CCOP 483,525 6.05 29,253 Duluth CCOP 563,042 6.05 34,064 Carle Cancer Center CCOP 397,585 6.05 24,054 Meritcare Hospital CCOP 402,567 6.05 24,355 Sioux Community Cancer Consortium 359,785 6.04 21,731 Missouri Valley Cancer Consortium CCOP 399,670 6.04 24,140 Ann Arbor Regional CCOP 393,221 6.04 23,751 Ochsner CCOP 335,086 6.04 20,239 Iowa Oncology Research Association 505,639 6.00 30,338 Clinical Oncology Program 350,433 6.00 21,026 Kansas City CCOP

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Improving Palliative Care for Cancer Total Project $ Percenta $ Relevant to Palliative Care Project Titleb 273,234 6.00 16,394 University of Illinois Minority Based CCOP 445,098 6.00 26,706 Scott and White CCOP 434,322 6.00 26,059 Greenville, South Carolina CCOP 150,185 6.00 9,011 Gynecologic Oncology Group 296,456 6.00 17,787 Montana Cancer Consortium 185,244 6.00 11,115 Santa Rosa Memorial Hospital Regional CCOP 361,602 6.00 21,696 Hawaii Minority Based CCOP 301,593 6.00 18,096 South Texas Pediatric Minority Based CCOP 184,797 6.00 11,088 Minority Based Clinical Oncology Program 1,035,721 6.00 62,143 Southeast Cancer Control Consortium Inc. 500,180 6.00 30,011 Central Illinois CCOP 451,849 6.00 27,111 Mount Sinai CCOP 304,404 6.00 18,264 Tumor Institute CCOP 847,078 6.00 50,825 CCOP Research Base 165,969 6.00 9,958 CCSG Research Base for CCOP 501,148 6.00 30,069 Pediatric Oncology Group as a CCOP Research Base 510,286 6.00 30,617 Community Clinical Oncology Program 460,201 6.00 27,612 Southern Nevada Cancer Research Foundation CCOP 550,206 6.00 33,012 Northwest CCOP 761,255 6.00 45,675 North Shore CCOP 293,899 6.00 17,634 Greater Phoenix CCOP 462,893 6.00 27,774 Columbus CCOP 286,396 6.00 17,184 CCOP 266,547 6.00 15,993 Florida Pediatric CCOP 551,590 6.00 33,095 Upstate Carolina CCOP 3,877,581 6.00 232,655 CCOP—Biostatistical Center 405,949 6.00 24,357 Louisiana State University Medical Center Minority-Based CCOP 368,614 6.00 22,117 Virginia Commonwealth University Minority-Based CCOP 1,134,032 6.00 68,042 Cancer and Leukemia Group B CCOP Research Base 11,242,692 6.00 674,562 Southwest Oncology Group—CCOP Research Base 519,100 6.00 31,146 CCOP Research Base 1,568,634 6.00 94,118 CCOP 9,772,324 6.00 586,339 CCOP 240,240 6.00 14,414 Baptist Cancer Institute CCOP 406,637 6.00 24,398 Ozarks Regional CCOP 481,158 6.00 28,869 Atlanta Regional CCOP 553,267 6.00 33,196 Christiana Care CCOP

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Improving Palliative Care for Cancer Total Project $ Percenta $ Relevant to Palliative Care Project Titleb 425,939 6.00 25,556 Syracuse Hematology-Oncology CCOP 509,387 6.00 30,563 Columbia River Oncology Program 260,360 6.00 15,622 St Louis/Cape Girardeau CCOP 187,892 6.00 11,274 Green Mountain Oncology Group 400,043 6.00 24,003 Dayton Clinical Oncology Program 3,660,649 5.71 209,023 CCSG 6,026,463 4.63 279,025 Cancer Center Support (Core) Grant 6,756,815 3.34 225,678 Cancer Center Support 3,092,697 3.32 102,678 Cancer Center Core Support Grant 1,256,873 2.84 35,695 Cancer Center Support Grant 854,004 2.23 19,044 Cancer Center of Wake Forest University 5,818,218 1.37 79,710 CCSG 3,194,572 0.60 19,167 Cancer Center 2,056,974 0.44 9,051 CCSG 2,551,080 0.43 10,970 CCSG 2,220,205 0.41 9,103 Yale Comprehensive Cancer Center 4,876,435 0.30 14,629 Regional Oncology Research Center 3,510,542 0.21 7,372 CCSG 202,113 0.11 222 Genetic Markers for Therapy of Colon Cancer 2,640,213 0.11 2,904 ECOG Statistical Center—Data Management Office 2,329,568 0.11 2,563 ECOG Statistical Office 6,944,062 0.11 7,638 ECOG Operations Office 154,596 0.11 170 ECOG Institution Grant 181,018 0.11 199 ECOG 366,391 0.11 403 ECOG 281,735 0.11 310 ECOG 234,810 0.11 258 ECOG 446,441 0.11 491 ECOG 547,877 0.11 603 ECOG—Wisconsin Studies 393,987 0.11 433 ECOG Clinical Trials 286,855 0.11 316 ECOG 391,656 0.11 431 ECOG 170,319 0.11 187 ECOG 335,704 0.11 369 ECOG Studies 206,311 0.11 227 ECOG 426,499 0.11 469 ECOG 345,144 0.11 380 ECOG 742,780 0.11 817 ECOG Chair’s Office 146,456 0.11 161 ECOG 3,001,469 0.05 1,501 University of Michigan Cancer Center 2,865,494 0.02 573 American College of Surgeons Oncology Trials Group

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Improving Palliative Care for Cancer Total Project $ Percenta $ Relevant to Palliative Care Project Titleb 824,877 0.02 165 Quality Assurance Review Center (QARC) 401,529 0.02 80 EORTC Data Center 735,000 0.02 147 Radiological Physics Center 2,803,329 0.02 561 CCSG TOTAL   6,148,591   NOTE: CCOP=Community Clinical Oncology Program; CCSG=Cancer Center Support Grant; ECOG=Eastern Cooperative Oncology Group; EORTC=European Organization for Research and Treatment of Cancer; SPORE=Specialized Program of Research Excellence. aNCI estimate of percent of total relevant to palliative care bGrant numbers, principal investigators, and specific institutions have not been listed in this table. SOURCE: Colbert, 2000.

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Improving Palliative Care for Cancer APPENDIX 1B Recommendations from Enhancing Data Systems to Improve the Quality of Cancer Care (IOM, 2000) 1. Enhance Key Elements of the Data System Infrastructure Recommendation 1: Develop a core set of cancer care quality measures. The Secretary of the Department of Health and Human Services (DHHS) should designate a committee made up of representatives of public institutions (e.g., the DHHS Quality of Cancer Care Committee, state cancer registries, academic institutions) and private groups (e.g., consumer organizations, professional associations, purchasers, health insurers and plans) to: 1) identify a single core set of quality measures that span the full spectrum of an individual’s care and are based on the best available evidence; 2) advise other national groups (e.g., National Committee for Quality Assurance, Joint Commission for the Accreditation of Healthcare Organizations, Quality Forum) to adopt the recommended core set of measures; and 3) monitor the progress of ongoing efforts to improve standard reporting of cancer stage and comorbidity. Research sponsors (e.g., Agency for Healthcare Research and Quality [AHRQ], National Cancer Institute [NCI], Health Care Financing Administration [HCFA], Department of Veterans Affairs [VA]) should invest in studies to identify evidence-based quality indicators across the continuum of cancer care.

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Improving Palliative Care for Cancer Ongoing efforts to standardize reporting of cancer stage and comorbidity should receive a high priority and be fully supported. Efforts to identify quality of cancer care measures should be coordinated with ongoing national efforts regarding quality of care. Recommendation 2: Congress should increase support to the Centers for Disease Control and Prevention (CDC) for the National Program of Cancer Registries (NPCR) to improve the capacity of states to achieve complete coverage and timely reporting of incident cancer cases. NPCR’s primary purpose is cancer surveillance, but NPCR, together with the Sur veillance, Epidemiology, and End Results (SEER) Program, has great po tential to facilitate national, population-based assessments of the quality of cancer care through linkage studies and by serving as a sample frame for special studies. Recommendation 3: Private cancer-related organizations should join the American Cancer Society and the American College of Surgeons to provide financial support for the National Cancer Data Base. Expanded support would facilitate efforts underway to report quality benchmarks and performance data to institutions providing cancer care. Recommendation 4: Federal research agencies (e.g., NCI, CDC, AHRQ, HCFA) should support research and demonstration projects to identify new mechanisms to organize and finance the collection of data for cancer care quality studies. Current data systems tend to be hospital based, while cancer care is shifting to outpatient settings. New models are needed to capture entire episodes of care, irrespective of the setting of care. Recommendation 5: Federal research agencies (e.g., National Insti tutes of Health [NIH], Food and Drug Administration [FDA], CDC, and VA) should support public-private partnerships to develop technologies, including computer-based patient record systems and intranet-based com munication systems, that will improve the availability, quality, and time liness of clinical data relevant to assessing quality of cancer care. Recommendation 6: Federal research agencies (e.g., NCI, AHRQ, VA) should expand support for training in health services research and training of professionals with expertise in the measurement of quality of care and the implementation and evaluation of interventions designed to improve the quality of care.

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Improving Palliative Care for Cancer 2. Expand Support for Analyses of Quality of Cancer Care Using Existing Data Systems Recommendation 7: federal research agencies (e.g., NCI, AHRQ, VA) should expand support for health services research, especially studies based on the linkage of cancer registry to administrative data and special studies of cases sampled from cancer registries. Resources should also be made available through NPCR and SEER to provide technical assistance to states to help them expand the capability of using cancer registry data for quality improvement initiatives. NPCR should also be supported in its efforts to consolidate state data and link them to national data files. Recommendation 8: Federal research agencies (e.g., NCI, AHRQ, HCFA) should develop models for the conduct of linkage studies and the release of confidential data for research purposes that protect the confi dentiality and privacy of healthcare information. 3. Monitor the Effectiveness of Data Systems to Promote Quality Improvement Within Health Systems. Recommendation 9: Federal research agencies (e.g., NCI, AHRQ, HCFA, VA) should fund demonstration projects to assess the application of quality monitoring programs within healthcare systems and the impact of data-driven changes in the delivery of services on the quality of health care. Findings from the demonstrations should be disseminated widely to consumers, payers, purchasers, and cancer care providers.