Working Group 6: Palliative Care, End-of-Life Care, and Pain Relief

Speaker:
Kathleen M. Foley, M.D., Memorial Sloan Kettering Cancer Center

Co-Chairs:
Nora Janjan, M.D., University of Texas, M.D. Anderson Cancer Center
Ruth McCorkle, R.N., Ph.D., F.A.A.N., Yale University School of Nursing

Introduction

Research on treatment- or cancer-related distress has not targeted older cancer patients as a group, even though persons aged 65 years and older experience most of the cancer burden. As a result, knowledge about measures of pain and other types of symptom control and palliative care in older cancer patients is limited. Moreover, palliative care in most adult age groups in the United States has not reached its full potential; attention to this issue is critically important, as 20 percent of the American population will be aged 65 years and older in less than three decades (by 2030). Accelerated strides in cancer therapy have tended to blur the distinction between hope for a cure and recognition that cancer is a terminal illness. In fact, cancer is often considered a chronic disease. However, recent advances in cancer treatment still require aggressive symptom management as well as psychological, social, and spiritual support throughout all phases of cancer diagnosis and treatment in all age groups. Supportive and palliative care is essential for managing the complications of cancer and its treatment at any stage of the disease. In addition, the psychosocial care of patients and families and care of the dying must be addressed.

Two key national studies have evaluated these issues. The first, a National Cancer Policy Board (NCPB) study, responded to the 1997 Institute of Medicine (IOM) report, Approaching Death: Improving Care at the End of Life, which discussed a range of end-of-life issues. This report received national attention and is now regarded as a milestone in palliative care. Opportunely, the NCPB report Improving Palliative Care for Cancer: Summary and Recommendations was issued by the IOM the week after the NIA/NCI cancer centers workshop. Two cancer center workshop participants, Dr. Kathleen M. Foley, the speaker for Working Group 6, and Dr. Charles S. Cleeland, a participant in Working Group 6, contributed to the NCPB report, which is an excellent resource for all initiatives generated from the priorities of Working Group 6.

Following the lead of the NCPB, Working Group 6 adopted the World Health Organization definition of palliative care as "the active total care of patients whose disease is not responsive to curative treatment." Control of pain; other symptoms; and psychological, social, and spiritual problems are of paramount importance in palliative care, whose goal is to achieve the best quality of life for patients and their families.

In her introductory remarks at the NIA/NCI cancer centers workshop, Dr. Foley indicated that the term palliative care was formerly associated with patients who were clearly near the end of life. In Dr. Foley's view, more comprehensive definitions of palliative care should address the multidimensional aspects—interpersonal, physical, psychological, social, and spiritual—of patients and their families. The primary objective of palliative care is to enhance the quality and meaning of life and death.

Research Questions

1. How can quality cancer care and treatment, including pain management, that provides comfort and reflects patient and family preferences be ensured for older individuals with cancer?
2. What are the available resources/difficulties in the current system for the specific needs of older patients and their caregivers during cancer care?

The lessons learned from palliative care in the older population can apply to all patients. The research priorities of Working Group 6 represent broad-based, epidemiologic studies and translational health services research. The outcomes of the proposed research may improve tolerance of therapy and supportive care and increase participation of the elderly in clinical trials.

Cancer Center Role

The NCPB report's summary and recommendations include a special focus on the contribution that cancer centers, in particular, could make to palliative care research. According to the NCPB, "NCI-designated cancer centers should play a central role as agents of national policy in advancing palliative care research and clinical practice, with initiatives that address many of the barriers identified in this report."

The activities recommended for cancer centers in palliative research include the following examples:

• Formally testing and evaluating new and existing practice guidelines for palliative and end-of-life care, such as pain relief and control of other symptoms;
• Incorporating the best palliative care, pain relief, and depression and fatigue management into NCI-sponsored clinical trials;
• Pilot testing quality indicators for end-of-life care at the patient and institutional level; and
• Developing innovations in the delivery of palliative and end-of-life care, including collaborating with local hospice organizations.

Research Priorities

1. Organize descriptive work that is relevant to older cancer patients in a well-thought-out manner.
   • Outcomes should be correlated with the application of guidelines to comorbidity, treatment-related toxicities, and survival outcomes.
   • Available methodologies for such evaluations need to be identified.
2. Develop and test service delivery models to provide palliative care to the elderly in a variety of contexts that include acute care, home care, and nursing homes.
   • Prospective evaluations of older cancer patients should be implemented in these different settings.
   • Parameters to be examined are cost of care, including the amount of cost shifted to the family (such as time off from work and the resulting loss in wages), and ways to make the models of care cost-effective.
   • Prospective evaluations should address symptom control and end-of-life care over the continuum of care, as opposed to the traditional "cure versus care" approach.
   • Caregivers and their activities should be evaluated to determine who they are, their locations with respect to the elderly patients for whom they care, their availability to provide care, and their own well-being.
   • Special needs and resources, such as mental health, dental health, nutrition, cataracts, and hearing aids, should be addressed in these models.
   • Principles of care that have research support should be applied to all age groups.
3. Test and facilitate the use of evidence-based guidelines for pain relief and symptom control. Examine drug selection, pharmacokinetics, effects of drugs on surgery, and drug-drug interactions as they relate to agents for comorbidities, chemotherapy, and palliative care medications.
   • The focus should be on factors that influence decision making and outcomes, such as the ability of patients with comorbidities to understand and tolerate therapies. Physical symptoms need to be distinguished from overlapping psychological problems, such as confusion and depression.
   • Access to care needs to be improved for underserved groups, including minority patients, patients whose primary language is not English, patients with limited financial resources, and patients who live far away from physicians or centers.
   • Best practices for symptom control in the elderly must be determined.
   • Generic guidelines for problems specific to the elderly (e.g., age-related comorbid conditions; limited functional reserve) should be examined.

Research Barriers

• Research in some areas requires descriptive studies before testing interventions. Although descriptive information is greatly needed, it is not usually highly regarded in the academic community.
• Few researchers are trained in geriatrics and palliative care.
• More health care providers in palliative care for the elderly are needed, including medical residents, hospice staff, nurse practitioners, physician assistants, and social workers. Working Group 6 also strongly recommended developing and implementing health professional training programs in palliative care for the elderly.
• The reimbursement and duration of hospice care is limited by current payment systems, which also severely limit options for palliative care, such as radiation therapy, in hospice settings.

Mechanisms

• More experts in palliative care need to participate in research, and this should be encouraged by developing incentives for investigators to design new protocols. This would demonstrate the importance of care for elderly cancer patients and of investigators' participation in research on such care.
• A Specialized Program of Research Excellence (SPORE) in symptom management and palliative care should be implemented.
• Professional education should be provided in cooperative groups and cancer center settings.
• Palliative care should be included in core grant shared resources.
• Existing Web-based resources should be used to disseminate information and assess existing data from Surveillance, Epidemiology, and End Results (SEER).
• Collaborations are needed within geriatric medicine and other pertinent specialties.
• Multidisciplinary approaches to treating elderly patients with cancer are needed to compare the new approaches with traditional models, such as Project Enable (Educate, Nurture, Advise, Before Life Ends).
• A network should be formed with the academic community to conduct research on aging and create links among NIH institutes—such as NIA; the National Heart, Lung, and Blood Institute; the National Institute of Diabetes and Digestive and Kidney Diseases; and the National Institute of Nursing Research—to focus on Alzheimer's disease, heart and lung disease, neurology, arthritis and pain, cancer, and nursing.
• A network should be formed among government agencies, such as the Centers for Medicare and Medicaid Services and the Health Resources and Services Administration, academic/regional cancer centers, and the NIH institutes to implement research findings more rapidly in cancer patients.
• Mechanisms are needed to ease navigation through the system by older cancer patients who require the support of nurses, social workers, and nutritionists. The relative costs of navigating this complex system should be assessed, and a more simple and cost-effective system of health care should be designed.
• A network should be formed with legislative bodies to inform them of findings that can be acted upon rapidly.