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. In Part II of the full report, 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 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, 2001]). 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 donations 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 in the full report), demonstrates severe problems in securing and being paid for adequate palliative care through private insurers. Holland and Chertkov (Chapter 7 in the full report) 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), 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.

Box 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 (more...)

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, 2000). 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, in Part II of the full report, 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 as a result of that report. Even in 2000, however, the programs were 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 with dying patients, particularly for undergraduate medical students, if any, is limited.

Nurses are expected to provide physical, emotional, spiritual, and practical care for patients in every phase of life. They spend more time with patients near the end of life than do any other health professionals. Yet like physicians, most nurses in the United States do not receive the training and practical experience they need to carry out these duties in the best fashion. The nursing curriculum has been less studied than the medical curriculum, but this has been changing, particularly in response to debates about assisted suicide and euthanasia (Ferrell et al., 2000).

Social workers are central to counseling, case management, and advocacy services for the dying and for bereaved families. With their focus on the psychosocial aspects of the dying process, they work not only with patients but with those around them in making decisions about treatment options, marshaling resources, helping families cope with terminal illness and death of a relative, and generally encouraging the best quality of life for all concerned. Just as nursing and medicine have begun to do, the social work profession has been examining its education process for preparing practitioners to care for dying patients and their families. Efforts to improve undergraduate- and master's-level social work training in this area are just getting under way in the United States, in comparison to the more mature field in Canada and England and in comparison to medical and nursing education (Christ and Sormanti, 1999).

In medicine, nursing, and social work, the following are needed:

• faculty development,
• educational materials and curriculum development,
• coordination among training programs for the variety of professionals involved in the care of dying patients,
• guidelines for residency programs and increased palliative and end-of-life content in licensing and certifying examinations, and
• improving the research base for palliative care education.

Inadequate Standards of Care and Lack of Accountability in Caring for Dying Patients

Practice Guidelines

The process of developing standards of care for patients at the end of life is under way, but still at an early stage. In Part II of the full report, Holland and Chertkov (Chapter 7) review the status of practice guidelines for care at the end of life, including both physical and psychosocial components (Table 1). The one aspect for which evidence-based guidelines for end-of-life care do exist is pain management. In addition to general pain management guidelines (the Agency for Healthcare Research and Quality [AHRQ] and the National Comprehensive Cancer Network [NCCN]), guidelines specifically for pain control at the end of life have been developed. Work is progressing on guidelines for some other common symptoms. NCCN guidelines exist for a variety of psychosocial conditions— distress, delirium, depression, anxiety, personality disorders, social problems, and spiritual and religious issues—but they are general and have to be modified for dying patients (a process that is under way through NCCN). A guideline for fatigue is in the same state, and one for nausea and vomiting has been developed for treatment-related symptoms, but not for end-of-life symptoms. No guidelines exist for managing dyspnea, a frequent and distressing symptom.

TABLE 1

Clinical Practice Guidelines for End-of-Life Care: Status, Source, and Further Development Needed.

Various groups are working toward guidelines in these areas (despite, in many cases, a lack of evidence forcing reliance on consensus), but plans for validation and field testing are probably years off for most of them.

Accountability: Quality Indicators

It is not enough to define the best treatments and develop models of excellent palliative and end-of-life care, or even to educate health care providers about what works and what doesn't, although these are all necessary steps. What is important is that dying patients, in the variety of health care settings in which they receive care, actually get the best treatments. The NCPB report Ensuring Quality Cancer Care (IOM, 1999) outlined a vision for the development of “indicators” to cover the spectrum of cancer care—including the dying process—that could be used to hold health care providers, institutions, and health plans accountable for the quality of care given.

As Teno demonstrates in Chapter 3 of the full report, we are not close to meeting this mandate for care at the end of life, either for cancer or for other conditions (Table 2). Research and demonstration programs will be needed before even a preliminary set of satisfactory indicators can be developed. The focus of early work will be on the development and validation of measurement tools based on administrative data, medical records, and interviews with patients, family members, and health care providers. These instruments must be developed and adapted for different cultures and ethnicities.

TABLE 2

Status of Quality Indicator Development for End-of-Life Care.

Quality indicators are needed for two main purposes: accountability (external use by regulators, health care purchasers, or consumers) and quality improvement (internal use for the purpose of monitoring or continuous quality improvement). The same types of indicators may serve both purposes, but for some aspects, they may have to be different.

At this early stage in development, there is a strong evidence base to support the use of quality indicators for pain management for the purpose of accountability, and in fact, a standard (not specific to end-of-life care or cancer) has just taken effect through the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), requiring all participating hospitals to demonstrate that they adequately monitor and manage the pain of patients (JCAHO, 2000). However, more basic research and demonstration projects are needed to develop indicators for managing other common symptoms (e.g., emotional distress and depression, fatigue, gastrointestinal symptoms). An important aspect of demonstration and validation is monitoring for potential unintended consequences (e.g., patients are sedated contrary to their preferences to improve accountability statistics).

Besides the domain of symptom management, four other domains should be considered for early development and implementation of accountability measures: (1) patient satisfaction, (2) shared decisionmaking, (3) coordination, and (4) continuity of care. In each of these domains, indicators must validly represent the perceptions of the dying person and family members. This means investing in new survey methods that are patient centered and include questions that get at unmet needs.

Shared decisionmaking has been increasingly recognized as a key aspect throughout the continuum of care. Although the focus of research has been on resuscitation decisions, the most important decision for the majority of cancer patients is the one to stop active treatment, but there is little research that examines this decision.

Beyond those mentioned, there is debate over which other domains are important in the care of the dying. Various conceptual models have been proposed to examine the quality of end-of-life care, with different emphases. Research is now needed to examine the correlations among structures of the health care system, processes of care, and important outcomes to identify the most fruitful areas for developing new quality measures.

Ongoing national data collection efforts include little information to describe the quality of care of dying persons and their families. An occasional survey, the National Mortality Followback Survey (NMFBS), has collected information on access to care and functional status, but not on important domains that are central to the quality of care of the dying. A redesigned NMFBS could collect information on key domains to describe the quality of care for patients who died based on the perspective of the bereaved family member. There are no current plans for further iterations of the NMFBS, however.

Two national data collection systems warrant consideration for development of quality indicators: Medicare claims files and the Nursing Home Minimum Data Set (MDS). The NCPB has recommended previously that hospice enrollment and length of stay be examined as quality indicators (IOM, 1999). From a national perspective, the only source of that information is Medicare claims data. Other indicators based on administrative data have also been proposed. Work to develop and validate these indicators using claims data is still to be done.

The second national data collection effort is the MDS, which routinely collects extensive information on every nursing home resident in the United States. Nursing homes increasingly are providing end-of-life care for frail and older Americans. In 1998, an estimated 10 percent of cancer patients died in a nursing home. The Health Care Financing Administration (HCFA) is now embarking on a national program of examining nursing home quality performance. There are important lessons to be learned from the MDS, including concerns about the institutional response burden in implementing data collection and the potential for unintended consequences. In the nursing home setting, a concern is that quality indicators have been developed for the majority of nursing home residents (who are not dying imminently) where the main goals of care are to restore function, yet the same indicators will be applied to those who are dying. For example, the rates of dehydration and weight loss are now among the core quality indicators for nursing homes. With increased scrutiny of these indicators, there is concern that unintended consequences for the dying might include increased use of feeding tubes, which could be contrary to patient preferences.

Disparities in End-of-Life Care for Minority Groups

Cancer statistics for certain minority groups in the United States reveal substantial inequalities in health outcomes. African Americans represent the largest minority population, and the one for which there is the best documentation of unequal access to, and quality of, care. Cancer incidence and mortality rates are significantly higher, and survival rates significantly lower, for African Americans than for whites in the United States. African Americans are also underrepresented in the use of hospice care. In recent years, only 5-7 percent of hospice patients have been African Americans, even though they make up about 14 percent of the total population. In Chapter 5 of the full report, Payne describes the historical, cultural, and economic determinants of this pattern of underutilization of palliative and end-of-life care in the African-American population, which can be taken as a model for other medically underserved and vulnerable populations that are less well studied. Bias (conscious and unconscious) of health care providers, lack of economic access for many African-American and other minority group members, and a wide range of cultural factors place minority groups at a disadvantage in getting adequate palliative care.

Unequal treatment in the U.S. health care system has deep roots in the African-American community. The health care system, along with many other societal institutions, lacks credibility with many African Americans because of past abuses, which are commonly known: slavery, medical experimentation, Jim Crow laws, and so forth. Denial of death (even in the face of terminal illness) is seen—if unconsciously—as fighting back against past injustice; whereas accepting palliative care is viewed as giving up on care that the majority might receive.

Even when palliative care is wanted and needed, however, it may not be available. Hospice care may not be available in poor, inner-city areas, which are generally underserved for health care. A stark example comes from a recent study demonstrating that pharmacies in predominantly non-white communities do not stock opioids at all or have inadequate stocks (Morrison et al., 2000). In an accompanying editorial, the story is recounted of an elderly woman with unrelieved bone pain from metastatic cancer, whose daughter was unable to buy a prescribed morphine-based drug in any local pharmacy (Freeman and Payne, 2000). This is just an example of inequities that pervade the provision of palliative care for minority populations.

There is an urgent need for palliative care units in inner-city hospitals, which involves not only providing facilities, but training teams of providers to staff these units. Even more fundamental, research is required to understand the needs and preferences of African Americans and other minorities for end-of-life care and to elucidate the health policy and financial barriers that leave these groups with inadequate care during the dying process.

Lack of Information Resources for the Public on Palliative and End-of-Life Care

Faced with a diagnosis of cancer, people often respond by gathering information about the cause of their ailment, treatment options, and advances in medical research. Patients find information from any number of sources—health professionals, family, friends, religious leaders, printed materials, telephone hotlines, mail order, and increasingly, the World Wide Web. The materials available, however, emphasize curative treatment and living as a cancer survivor to the relative exclusion of information on palliative care and end-of-life issues. Kesselheim, in Chapter 4 of the full report, analyzes the state of information available for those with advanced cancer who are likely to die from their disease.

Physicians are often the first, and remain the most important, source of information for a large proportion of patients about all aspects of a cancer diagnosis and treatment.

Lack of Reliable Data on Quality of Life and Quality of Care at the End of Life

There is sufficient information from recent studies to demonstrate that cancer patients are consistently undertreated for pain, are underdiagnosed for their psychological distress, and have significant economic barriers to getting palliative care and that health care professionals identify their lack of both knowledge and training, as well as ability to obtain effective services for their patients, as major barriers to providing adequate care. At the same time, we have little understanding of the particular dying experiences of most patients with cancer—where they die, who cares for them as they are dying, what the quality of such care is, whether guidelines are in fact being followed, and whether these things are changing over time. This lack of information hampers our ability to develop a clear policy agenda and will, in the future, impede monitoring trends to determine whether interventions are having their intended effects.

Knowing how well we're doing or whether things are getting better in end-of-life care requires some routinely collected information, as well as specific studies. New data collection efforts might be necessary, but it may be possible to make better use of data already being collected, including those collected for other purposes. HCFA's claims for Medicare reimbursement constitute a major resource on their own, and because it is becoming increasingly feasible to link these “claims data” to those from other systems and surveys, they may prove an even more powerful data source.

The needs for an in-depth assessment of the information potential of current data sources and for an assessment of future needs are identified in this report but are not within the scope of work. The NCPB plans a comprehensive follow-on report to delve into this topic and will defer recommendations related to data collection until that report is complete.

Low Level of Public Investment in Palliative and End-of-Life Care Research

Despite billions of dollars spent on research in cancer biology and cancer therapeutics, there has been little investment in research that might significantly alleviate the physical and psychological distress of patients at the end of life. In Part II of the full report, Cleeland (Chapter 8) reports that compared to the rest of the cancer research establishment, research directed at cancer-related symptom management is poorly organized, poorly conceptualized, underfunded, and dependent on an insufficient number of well-trained researchers.

The feasibility of symptom control research has been demonstrated. Studies of the epidemiology of symptoms, behavioral research, health services research, and basic research, as well as clinical trials, have already produced benefits that have been translated into better care. Although the amount of improvement has not been well studied, it is very possible that patients now experience less distress related to medical procedures, that pain is somewhat better managed, and that there is wider recognition of and attention to end-of-life issues such as patient preference for end-of-life decisionmaking. Research has also documented the gaps between current care and optimal care and has identified very specific obstacles that could be addressed to improve care.

Perhaps less obvious has been a maturation of research methods that should facilitate rapid progress of research in this area. Subjective reports of patients about quality of life and symptoms are increasingly accepted as reasonable measures for clinical and laboratory research. Quality-of-life outcomes—including aspects of symptom control—have become more accepted as clinical trial end points. New technologies offer unique opportunities to understand the nature, mechanisms, and expression of symptoms that were not possible a few years ago (e.g., new brain imaging techniques to study pain and depression) and, further, to see how treatment affects them. Developments in neurobiology have opened windows to a better understanding of end-of-life symptoms. Exciting new agents that could provide better control of most of the symptoms of the dying process have been and are being developed. There is a real possibility that individual variation in symptom expression may be better understood through progress in genetic science. It can no longer be said that tools to advance the area are lacking, and there is also no lack of research targets.

The understanding of pain, although more advanced than that of other symptoms, still has enormous gaps to be filled. This finding is confirmed and detailed in a January 2001 AHRQ Evidence Report/Technology Assessment, Management of Cancer Pain (AHRQ, 2001), which concludes:

Randomized controlled trials establish that many current treatment modalities can individually reduce cancer pain. These trials constitute 1 percent of the published literature on cancer pain, enroll one in 10,000 patients at risk for cancer pain in industrialized countries, are often heterogeneous, and use poor methodology. Leading investigators in the area of cancer pain relief have repeatedly called for improving the quality of trials in this area. The quantity and quality of scientific evidence on cancer pain relief still, however, compare unfavorably with the great deal that is known about other high-impact conditions, including cancer itself. In the current era of patient-centered care, closing this gap should be a high research priority.

Our understanding of symptoms other than pain is much more primitive. Research examining ways of improving the care given to patients with advanced cancer is just beginning. Methods for studying and providing for the more complex subjective needs of patients (spiritual, existential) have to be developed. Few of the common practices of caring for patients with advanced cancer have been subjected to careful randomized clinical trials, impeding the provision of evidence-based practice recommendations.

Cleeland has laid out a research agenda for the most important symptoms in the disciplines of basic science, epidemiology, social-behavioral research, health services research, and clinical trials. Specific opportunities and currently unmet research needs in symptom control are outlined in Table 3.

TABLE 3

Symptom Control Research Opportunities and Unmet Needs.

The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment

Asked to name the most influential phenomenon in moving end-of-life care in the 1990s, most who know the field would probably name SUPPORT—the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. SUPPORT was a two-stage research project, beginning with an observational study of aspects of end-of-life care, followed by a randomized intervention trial to try to improve the quality of care found in the first stage, with the emphasis on communication between caregivers and patients. A companion study, HELP—the Hospitalized Elderly Longitudinal Project—was similar to the first stage of SUPPORT, but included only the very old, people 80 years and over (see Box 2 for a description of the studies). SUPPORT and HELP were funded solely by the Robert Wood Johnson Foundation at more than $29 million, the largest project ever funded by RWJF (Phillips et al., 2000).

The SUPPORT randomized trial is “negative,” in that the interventions did not improve quality of care in the hoped-for ways. The irony is that SUPPORT and HELP focused the attention of professionals and the public on care of the dying—stories about the project made front-page news in the national press—in a way that nothing else had. SUPPORT also catalyzed new thinking about the nature of the problems underlying care at the end of life and about what changes would be needed to fix them. Simplistically, we moved from hoping that doing A, B, and C to improve communication would result in better care (widely believed by experts to be the answer before SUPPORT), to an understanding that much broader system-wide and society-wide changes would have to take place. The depth and richness of the studies, beyond this single finding, are hinted at by the 100 or so journal articles that have probed SUPPORT data (Phillips et al., 2000).

The failure of the planned interventions spurred the interested community to try to understand what went wrong and what could be done differently. This led RWJF to begin its Last Acts campaign, an effort to improve end-of-life care at the grassroots level that now has more than 400 members (Schroeder, 1999), and funding of demonstration programs to reduce the identified barriers to high-quality care for those who are dying.

Other Key Foundation Commitments

The Project on Death in America (PDIA) (www.soros.org/death) has committed $30 million to improving end-of-life care through its Faculty Scholars Program, grant programs, and special initiatives. The 70 or so faculty scholars that have been funded by PDIA serve as role models and clinical researchers in academic medical centers around the United States (and a few in Canada). About one-third of them are oncologists involved in direct patient care and directing palliative care programs.

The Nathan Cummings Foundation, together with the Commonwealth Fund, supported a major study of nearly 1,000 dying patients (most with cancer, heart disease, or chronic lung disease) and their caregivers. This is one of eight major research projects designed to expand the nation's understanding of the dying experience and find ways to improve it.

The Milbank Foundation (www.milbank.org) sponsored the development and publication of Principles for Care of Patients at the End of Life: An Emerging Consensus Among the Specialties of Medicine (Cassel and Foley, 1999), a document now signed onto by at least 17 health professional societies that have agreed to incorporate its principles into their professional education activities and residency training programs.

The Institute of Medicine

Another milestone was the 1997 report Approaching Death: Improving Care at the End of Life from the Institute of Medicine (1997). This was the first major national report covering the range of end-of-life issues, with evidence-based recommendations (see Box 3). It received widespread national attention and continues to be cited as a reference and source of guidance for improving end-of-life care. This report builds on the earlier report and its recommendations. (The reader is referred to the 1997 report for a thorough review of issues up to that time.) The 1999 National Cancer Policy Board report Ensuring Quality Cancer Care (IOM, 1999) has already been mentioned.

Box 3

RECOMMENDATIONS AND FUTURE DIRECTIONS— From Approaching Death: Improving Care at the End of Life (IOM, 1997) . Seven recommendations address different decisionmakers and different deficiencies in care at the end of life. Each applies generally (more...)

The President's Cancer Panel

The 1997-1998 report of the President's Cancer Panel ¹ (PCP) was entitled Cancer Care Issues in the United States: Quality of Care, Quality of Life, with a major focus on the need for NCI to fund research and training across the spectrum of care, including cancer prevention, cancer control, rehabilitation, palliation, and end-of-life care (President's Cancer Panel, 1998). The report states:

The quality of care provided to dying patients remains woefully inadequate and is a major failure of our health care system. Dying patients frequently face abandonment by their physicians and inadequate pain and other symptom control when treatment with curative intent is no longer tenable.

The PCP developed its report after a series of meetings around the country, at which a wide range of individuals—from the medical treatment and research communities, industry, the advocacy community, and the public at large—presented testimony about the quality of cancer care in the United States. Those who spoke about palliative and end-of-life care reinforced earlier findings (PCP, 1998):

Speakers emphasized the need for a compassionate and humane system of care for cancer patients at the end of life, including improved financing of hospice care, expanding the availability of palliative care approaches from hospice programs to cancer centers (including offering palliative care as an option in all clinical trials), establishing a focal point for palliative care research at the NCI, improving health care professional education about palliative care, and fostering more honest health professional and public dialogue about dying. A number of respected organizations, including the American Society of Clinical Oncology, the Institute of Medicine, and the World Health Organization, have developed reports and accompanying recommendations to address the deeply ingrained obstacles to compassionate end of life care for people with cancer. However, implementation of these recommendations and their integration into the standard of care is slow.

Among the panel's recommendations, the following relate to training and research in end-of-life and palliative care:

Training is needed to improve the ability of physicians and other health professionals to . . .:

Acknowledge that death and end of life issues are a part of the cancer experience for some patients, and provide more comprehensive and compassionate care to dying patients and their families.

The panel also stated:

Continued funding across the research spectrum is needed to continue the flow of discovery that leads to improvements in care across the cancer continuum. Research efforts should focus particularly on improving interventions in the areas of cancer prevention, cancer control, rehabilitation, palliation, and end of life care, and on outcomes research. In addition, targeted funding may be needed for behavioral and other research to improve quality of care in vulnerable populations, including those with low income and/or educational levels, differing cultures, the elderly, and rural populations.

Medicare Payment Advisory Commission (MedPAC)

MedPAC is an independent federal organization that was established by Congress for advice on issues affecting the Medicare program. Chapters devoted to end-of-life care appeared in recent major reports (MedPAC, 1998, 1999) including, in 1999, recommendations for the Medicare program and the Department of Health and Human Services, more broadly. They directed the Secretary of Health and Human Services to

• make end-of-life care a national quality improvement priority for Medicare+Choice and traditional Medicare;
• support research on care at the end of life and work with nongovernmental organizations as they (1) educate the health care profession and the public about care at the end of life and (2) develop measures to accredit health care organizations and provide public accountability for the quality of end-of-life care;
• sponsor projects to develop and test measures of the quality of end-of-life care for Medicare beneficiaries, and enlist quality improvement organizations and Medicare+Choice plans to implement quality improvement programs for care at the end of life; and
• promote advance care planning by practitioners and patients well before terminal health crises occur.

As yet, neither the Congress nor the Secretary has responded to these MedPAC recommendations.

Other Organizations and Efforts

A variety of professional and trade organizations, consumer groups, pharmaceutical companies, and others have taken positive steps related to palliative and end-of-life care, only the most prominent of which are touched on here. The American Society of Clinical Oncology (ASCO) is the main professional organization for practicing oncologists. In 1998, it took two important steps. First, ASCO published a position statement on cancer care during the last phase of life (ASCO, 1998), outlining the role of the oncologist, identifying impediments to achieving the best care, and recommending solutions. The details of the position statement flow from the belief that “it is the oncologists' responsibility to care for their patients in a continuum that extends from the moment of diagnosis throughout the course of the illness.” The statement goes on, “In addition to appropriate anticancer treatment, this includes symptom control and psychosocial support during all phases of care, including those during the last phase of life.”

Also in 1998, ASCO surveyed its membership in the first nationwide inquiry into end-of-life practices. The survey asked about education and training, current practice, perceived barriers to the delivery of care, decisionmaking vignettes about the management of patients, and individual experiences with terminal patients. The results, which have been presented at meetings and have begun to appear in print, confirm many of the deficiencies that have been recognized in caring for dying patients, but coming from the oncology community, they have hit with added force (see Box 4 for key survey findings).

Box 4

THE ASCO SURVEY. In 1998, American Society of Clinical Oncology conducted the first and only large-scale survey of U.S. oncologists about their experiences in providing care to dying patients. The questionnaire consisted of 118 questions about end-of-life (more...)

For the long term, ASCO has placed high priority on developing its program called “Optimizing Cancer Care: The Importance of Symptom Management.” The curriculum consists of 32 modules covering specific symptoms and symptom control issues (e.g., ascites, breaking bad news, depression, lymphedema). Modules are designed to get information into manageable pieces for practicing oncologists in a way that is concise and information-dense. The program has been featured at national ASCO meetings and will be featured at all yearly state ASCO meetings. ASCO plans to make it available on CD-ROM, on-line, and in print.

The Joint Commission on the Accreditation of Healthcare Organizations is the first national accrediting body to develop mandatory standards for pain assessment and management. JCAHO, which accredits the majority of hospitals and other health care organizations (including hospices), will begin evaluating the hospitals, home care agencies, nursing homes, behavioral health facilities, outpatient clinics, and health plans it inspects for compliance with the new standards in 2001. The organizations will be required to

• recognize the right of patients to appropriate assessment and management of pain;
• assess the existence and, if so, the nature and intensity of pain in all patients;
• record the results of the assessment in a way that facilitates regular reassessment and follow-up;
• determine and ensure staff competency in pain assessment and management, and address pain assessment and management in the orientation of all new staff;
• establish policies and procedures that support the appropriate prescription or ordering of effective pain medications;
• educate patients and their families about effective pain management; and
• address patient needs for symptom management in the discharge planning process.

The standards were developed collaboratively with the University of Wisconsin-Madison Medical School, as part of a project funded by RWJF to make pain assessment and management a priority in the nation's health care system (JCAHO Web site, http://www.jcaho.org/news/nb207.html).

NCI Funding for Palliative Care Research and Training

In this report, the Board recommends strongly that NCI step up its commitment to research toward improving end-of-life and palliative care— including symptom control, psychosocial issues, shared decisionmaking, and related topics. NCI has provided an accounting of its fiscal year 1999 extramural funding for all research with components related to palliative care or hospice, totaling $24.5 million (Colbert, 2000). (Most grants supported activities that were not focused exclusively on palliative care, so NCI has apportioned the dollar amounts attributed to this category as some percentage of the total grant.) Of that total, $18.3 million went to specific projects or programs (Appendix A, Table A-l), and $6.1 million represents fractions of institutional grants (Appendix A, Table A-2). Grants included in the list are those dealing with

• any and all aspects of cancer pain research, including mechanism, prevention, therapy, measurement tools, and so forth.;
• hospice, defined as research dealing with formally organized supportive care of terminally ill patients either at home or in an institution; and
• “other palliative care,” including any supportive care (e.g., psychological counseling, relief of nausea, or other symptom management) that is not coded as pain or hospice.

In addition to the research grants, $1.7 million was spent in 1999 on training grants related to end-of-life or palliative care (Begg, 2000). Altogether, the 1999 NCI expenditure on palliative and hospice care was just over $26 million, or about 0.9 percent of the total 1999 budget of $2.9 billion.