Until the early part of the twentieth century, most Americans died of infectious diseases, many in childhood and middle age. Then, virtually every serious illness, including cancer, spelled a fairly rapid course to death. Those who survived to old age and developed the chronic diseases that the majority of people now die from had shorter trajectories until death, with few experiencing prolonged periods of illness. Malignancies were identified only when large or in a critical location, and most often, no treatments were available that substantially altered the course. Now, many patients with cancer live much longer, with periods of adaptation to cancer as a chronic debilitating disease. However, most still eventually die from the cancer.

Improvements in the development and delivery of symptom control and other aspects of palliative care needed in the late stages of cancer (and other chronic diseases) have not kept pace with the medical advances that have allowed people to live longer. For at least half of those dying from cancer, 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. Patients, their families, and caregivers all suffer from the inadequate care available to patients in pain and distress, although the magnitude of these burdens is only now being described.

This report defines the major barriers that keep people from receiving excellent palliative care, as needed, throughout the course of their illness with cancer and recommends a series of steps forward. It builds on the

1999 National Cancer Policy Board report Ensuring Quality Cancer Care, which included a recommendation to

This report also takes forward the agenda outlined in a 1997 Institute of Medicine (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 National Cancer Policy Board believes action still has to be catalyzed.

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 following:

• 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 end-of-life care skills;

• 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.

Background papers (Part 2 of this report) were commissioned to explore the reasons for inadequacies in palliative and end-of-life care, and these (as well as consultation with additional experts and literature review) form the evidence base for the recommendations in this report. The background papers cover the following topics:

• Economic Issues and Barriers to Reliable, High-Quality, Efficient End of Life Care for Cancer Patients

• Quality Indicators for End-of-Life Cancer Care

• The Current State of Patient and Family Information About End-of-Life Care Issues

• Improving Access to and Quality of Palliative and End-of-Life Care: Issues in the African-American Community and Other Vulnerable Populations

• Special Issues in Pediatiric Oncology: End-of-Life Care

• Clinical Practice Guidelines for the Management of Psychosocial and Physical Symptoms of Cancer

• Cross-Cutting Research Issues: A Research Agenda for Reducing Distress of Patients with Cancer

• Professional Education in Palliative and End-of-Life Care for Physicians, Nurses, and Social Workers

People with cancer suffer from an array of symptoms at all stages of the disease (and its treatment), though these are most frequent and severe in advanced stages. Much of the suffering could be alleviated if currently available symptom control measures were used more widely. For symptoms not amenable to relief by current measures, new approaches could be developed and tested, if even modest research resources were made available. Both the use of current interventions and the development of new ones are hindered by the barriers discussed earlier (and in the chapters that follow). The National Cancer Policy Board’s recommendations are intended to break down or lower the barriers to excellent palliative care for people with cancer today, and those who will develop cancer in years to come. The recommendations describe a series of initiatives directed largely—though not exclusively—at the federal government, which should be playing a more powerful role than it does currently.

The conclusions and recommendations are not laid out in parallel to the barriers. They have been consolidated as “packages” for particular organizations and entities, and some address more than one barrier. Recommendation 1, in particular, which focuses on the role of National Cancer Institute (NCI)-designated cancer centers, contains elements that address all the barriers.

Recommendation 1: NCI should designate certain cancer centers, as wellas some community cancer centers, as centers of excellence in symptomcontrol and palliative care for both adults and children. The centers will

deliver the best available care, as well as carrying out research, training,and treatment aimed at developing portable model programs that can beadopted by other cancer centers and hospitals. Activities should include,but not be limited to the following:

• formal testing and evaluation of new and existing practice guidelines for palliative and end-of-life care;

• pilot testing “quality indicators” for assessing end-of-life care atthe level of the patient and the institution;

• incorporating the best palliative care into NCI-sponsored clinicaltrials;

• innovating in the delivery of palliative and end-of-life care, including collaboration with local hospice organizations;

• disseminating information about how to improve end-of-life careto other cancer centers and hospitals through a variety of media;

• uncovering the determinants of disparities in access to care by minority populations that should be served by the center, and developingspecific programs and initiatives to increase access; these might includeeducational activities for health care providers and the community, settingup outreach programs, etc.;

• providing clinical and research training fellowships in medical andsurgical oncology in end-of-life care for adult and pediatric patients;

• creating faculty development programs in oncology, nursing, andsocial work; and

• Providing in-service training for local hospice staff in new palliative care techniques.

Recommendation 2: NCI should add the requirement of research in palliative care and symptom control for recognition as a “Comprehensive Cancer Center.”

Recommendation 3: The Health Care Financing Administration (HCFA)should fund demonstration projects for service delivery and reimbursement that integrate palliative care and potentially life-prolonging treatments throughout the course of disease.

Recommendation 4: Private insurers should provide adequate compensation for end-of-life care. The special circumstances of dying children—particularly the need for extended communication with children and par-

ents, as well as health care team conferences—should be taken into account in setting reimbursement levels and in actually paying claims forthese services when providers bill for them.

Recommendation 5: Organizations that provide information about cancertreatment (NCI, the American Cancer Society, and other patient-orientedorganizations [e.g., disease-specific groups], health insurers and pharmaceutical companies) should revise their inventories of patient-orientedmaterial, as appropriate, to provide comprehensive, accurate informationabout palliative care throughout the course of disease. Patients would alsobe helped by having reliable information on survival by type and stage ofcancer easily accessible. Attention should be paid to cultural relevance andspecial populations (e.g., children).

Recommendation 6: Best available practice guidelines should dictate thestandard of care for both physical and psychosocial symptoms. Care systems, payers, and standard-setting and accreditation bodies shouldstrongly encourage their expedited development, validation, and use. Professional societies, particularly the American Society of Clinical Oncology, the Oncology Nursing Society, and the Society for Social Work Oncology, should encourage their members to facilitate the development andtesting of guidelines and their eventual implementation, and should provide leadership and training for nonspecialists, who provide most of thecare for cancer patients.

Recommendation 7: The recommendations in the NCPB report,Enhancing Data Systems to Improve the Quality of Cancer Care(seeAppendix B) should be applied equally to palliative and end-of-life care as to other aspects of cancer treatment. These recommendations include

• developing a core set of cancer care quality measures;

• increasing public and private support for cancer registries;

• supporting research and demonstration projects to identify newmechanisms to organize and finance the collection of data for cancer carequality studies;

• supporting the development of technologies, including computer-based patient record systems and intranet-based communication systems,to improve the availability, quality, and timeliness of clinical data relevant to assessing quality of cancer care;

• expanding support for training in health services research and otherdisciplines needed to measure quality of care;

• increasing support for health services research aimed toward improved quality of cancer care measures;

• developing models for linkage studies and the release of confidential data for research purposes that protect the confidentiality and privacyof health care information; and

• funding demonstration projects to assess the impact of quality monitoring programs within health care systems.

Recommendation 8: NCI should convene a State of the Science Meeting¹on palliative care and symptom control. It should invite other NationalInstitutes of Health and other government research agencies with sharedinterests should be invited to collaborate. The meeting should result in ahigh-profile strategic research agenda that can be pursued by NCI and itsresearch partners over the short and long terms.

Recommendation 9: NCI should establish the most appropriate institutional locus (or more than one) for palliative care, symptom control, andend-of-life research, possibly within the Division of Cancer Treatment andDiagnosis.

Recommendation 10: NCI should review the membership of its advisorybodies to ensure representation of experts in cancer pain, symptom management, and palliative care.