Still, many patients will die from their illnesses, notes Dr. James Tulsky, director of the Center for Palliative Care at Duke University. "There is a pressing need for end-of-life care, from symptoms management to provider care management to psychological and spiritual support," he says. NCI's Palliative Care Working Group is addressing that need by coordinating widespread efforts in research, education, and training and by collaborating with many government and nongovernment groups to improve care and reduce suffering for people living with advanced cancer.

"We need more evidence-based research to give better end-of-life care," says Andrea Denicoff, the NCI coordinator for palliative care initiatives. She notes that even though the science is strong on treating cancer pain, misunderstandings about and barriers to effective pain management are still common among caregivers, patients, and physicians.

Research has shown that many physicians need education about discussing and delivering evidence-based palliative care early in the treatment continuum. Dr. Tulsky and his colleagues have been conducting a study called SCOPE: Studying Communication in Oncologist Patient Encounters. After attending a lecture on patient communication, 50 oncologists had their regular conversations with advanced cancer patients recorded. Half of the oncologists received CD-ROMs containing their conversations, along with comments by SCOPE staff on how well the physician communicated.

"This method allows oncologists to enhance their communication skills through feedback," Dr. Tulsky says. "We also ask the patients for their feedback on their anxiety levels and satisfaction with their doctors; this gives us qualitative results."

Integrating palliative care early, Ms. Denicoff points out, improves symptom management and avoids a situation in which patients feel they are being given the either/or choice of being made comfortable or aggressively treating the disease. Instead, patients should have both treatment and symptom management along the disease trajectory. At the end of life, when the symptoms may be more frequent and intense, there should be a transition to more palliative care, according to Ms. Denicoff. "Doctors can help terminally ill patients die without suffering. That is a medical success - dying with unnecessary treatment or pain is not," she says.

To train more health professionals in palliative cancer care, the Education on Palliative and End-of-Life Care (EPEC) program is being modified to enable oncology professionals to teach colleagues about such aspects of cancer care as managing pain and symptoms, combining antineoplastic therapy and palliative care, and preventing professional burnout. The American Society of Clinical Oncology will deliver the first train-the-trainer workshop of this new EPEC-O (Oncology) program June 13-15, 2005, in Reston, Va. More information about the workshop is available at www.asco.org/epeco.

Barriers to communication among those most involved in end-of-life care - patients, caregivers, and clinicians - are another focus for the palliative care group. One of NCI's Centers of Excellence in Cancer Communications Research (http://dccps.nci.nih.gov/hcirb/ceccr/) is funding a program to test whether use of a system called CHESS - Comprehensive Health Enhancement Support Systems - can improve patients' quality of life and reduce stress, improve negative partner affect, and ease bereavement. In the study, by Dr. David Gustafson of the University of Wisconsin, a group of family members caring for partners or spouses with terminal lung cancer are given a computer with Internet access while the patient is ill and until 13 months after the patient dies. One-third of the group receives their regular oncology care and access to the Internet, one-third is asked to fill out online weekly forms on the patient's symptoms and the caregiver's well-being, and one-third completes the CHESS online forms to be provided to their primary oncologist. The groups filling out forms also have access to an online bulletin board where they can share feelings, suggestions, and information with other caregivers. The researchers believe that giving caregivers access to CHESS and feedback from clinicians through the system will decrease use of emergency health services and benefit the patients and caregivers.

"We need to continue to provide terminally ill cancer patients with excellent care until their death," says Dr. Tulsky. "Patients' needs may change as they transition from one stage to another, but their need for care does not."

For more information on NCI's palliative care initiatives, visit these Web sites: Important advances in supportive care research: http://www.cancer.gov/clinicaltrials/results/supportive-care-trial-results Funding opportunities in palliative care and symptom management: http://www.cancer.gov/researchandfunding/announcements/symptommanagement PDQ supportive care treatment summaries: http://www.cancer.gov/cancertopics/pdq/supportivecare Patient, family, and caregiver information about palliative care, including the booklets Advanced Cancer and When Cancer Recurs are being revised to better integrate updated information and will then be added to the cancer topics section of the NCI Web site, at http://www.nci.nih.gov/cancertopics/ NIH sponsored a state-of-the-science conference on end-of-life care on December 6-8; the draft NIH consensus statement can be found at http://consensus.nih.gov/ta/024/024EndOfLifepostconfINTRO.htm

By Laurie Hall