In an ideal world, palliative care would be integrated into therapeutic care from the time of cancer diagnosis—not limited to hospice or end-of-life care.
WASHINGTONIn an ideal world, palliative care would be integrated into therapeutic care from the time of cancer diagnosisnot limited to hospice or end-of-life care. An interdisciplinary palliative care team would regularly assess each patient's needs, not only for pain and symptom relief but also for psychosocial and spiritual needs. Their activities and recommendations would be closely coordinated with clinicians on the curative team.
This is no pipe dream, according to Ann Berger, MD, chief of the Pain and Palliative Care Service (PPCS) at NIH's Clinical Center, where she is working to turn this vision into reality. The NIH Clinical Center is a clinical research hospital, and all patients participate in clinical research studies.
Speaking at the World Cancer Congress, convened by the International Union Against Cancer (UICC), Dr. Berger described the philosophy and methods that are enabling NIH to integrate palliative care into the treatment of cancer patients and those with other diseases on therapeutic research protocols (abstract 6-2).
"Palliative care is optimized when initiated at the time of diagnosis and comprehensively utilized throughout the disease," Dr. Berger said. "We're there the whole way through."
At NIH, the PPCS is addressing those needs through a core team consisting of a chief physician, a palliative care advanced practice nurse, a nurse practitioner, a nurse thanatologist, and an administrative coordinator. Designated liaisons in Clinical Center departments also work with the PPCS.
The Quality-of-Life Team
A key tool for the PPCS team is going on rounds with the curative team. "Clinical presence at the bedside is paramount," Dr. Berger said. One challenge at the outset was the perception that the start of palliative care equals the end of hope for cure or long-term remission. Changing terminology helped. "We call ourselves the quality-of-life team," Dr. Berger said. "That's acceptable to patients."
A second critical step is daily follow-up visits to anchor symptom management in the research protocol. And a third is documentation in a consult format, providing a rationale for interventions.
The Pain and Palliative Care Services team members work with both inpatients and outpatients. The initial assessment includes quantitative and qualitative data on pain and symptoms, including medical, family, psychosocial, and spiritual history. The team then decides which disciplines would benefit the patient. Inpatients have daily bedside visits, and outpatients are offered biweekly clinics.
Another important tool in palliative care is a quality-of-life assessment. There are a number of tools, Dr. Berger said, but "which one you choose is less important than going through a symptom list." These lists provide a way for patients to give information on their activities of daily living, such as sleep, appetite, work, and hobbies; level of functioning, including endurance, fatigue, and physical impairments; and emotional status, including mood, socialization, concentration, anxiety, depression, and fear.
Interventions used by the PPCS include both pharmaceutical and nonpharmaceutical measures. "Our team believes very much in nonpharmacologic modalities and uses a lot of complementary modalities," Dr. Berger said. These include, for instance, acupuncture, massage, labyrinths, guided imagery, coping skill development, biofeedback, hypnosis, music therapy, pet therapy, and Reiki.
Outcome data on comprehensive palliative care services such as NIH's are still sparse. A study now underway at NIH is comparing outcomes among 150 cancer patients who have undergone surgery at the Clinical Center. Half were randomized to the palliative care program and half to observation and were followed for a year. The data should be available soon, Dr. Berger said.
Other studies at the NIH Clinical Center are looking at the effectiveness of pet therapy in reducing anxiety and pain in cancer patients and at personality and coping skills in bone marrow transplant patients, she said.
While these data, when available, may be helpful to other institutions in establishing palliative care services, the most important thing to keep in mind is the comprehensive nature of palliative care. "Palliative care is for any diagnosis, any age, any time," Dr. Berger summed up. "It complements curative disease modifying therapy and sometimes may become the total focus of care. What we're doing is healing the person."