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The field of palliative care, once largely confined to providing comfort to the dying, has broadened to include the physical, social, psychological, and spiritual aspects of coping with cancer over the entire continuum of cancer care. This change in perspective is due in part to medical advances that have resulted in more people experiencing cancer as a chronic disease. BenchMarks interviewed two key palliative care experts at the National Cancer Institute (NCI) to learn more about this changing field and its role in controlling symptoms and eliminating suffering for people with cancer.
Andrea M. Denicoff, R.N., M.S., C.A.N.P., coordinated palliative care initiatives in the Clinical Investigations Branch of NCI’s Division of Cancer Treatment and Diagnosis, and chairs NCI’s Palliative Care Working Group and serves as a locus for developing partnerships in palliative care.
Why is there a need for palliative care research?
Dr. Rowland: Very few of our current therapies are benign and without side effects. NCI and the oncology community have realized that it’s not enough just to search for a cure, we have to look at the negative consequences of cancer treatment. In fact, as a two-time cancer survivor himself, NCI Director Dr. Andrew von Eschenbach is committed to NCI’s role in eliminating suffering and finding ways to improve the quality of care and quality of life for cancer patients and their families.
Ms. Denicoff: Increasingly we’re treating cancer as a chronic disease– one that a patient may live with for many years. We know that palliative care plays a critical role from the moment of diagnosis, through treatment and survival.
How would you define palliative care?
Ms. Denicoff: I would certainly define it beyond the traditional definition of providing comfort to the dying. Several decades ago, the hospice movement in the UK sparked a new philosophy towards palliative care based on attitudes and skills that for the first time considered the psychological issues of patients and their families. In 2001, the Institute of Medicine issued a report called “Improving Palliative Care for Cancer” that defined palliative care as beginning at the diagnosis of cancer or any other chronic or potentially life-threatening disease. The World Health Organization expanded its definition the following year as improving the quality of life of patients and their families during the entire course of an illness. So gradually, palliative care has evolved beyond end-of-life to providing symptom management and other aspects of palliative care much earlier in the course of disease, along with tumor-directed therapies, and continues across the entire disease trajectory.
How did changing the definition change the field of palliative care research?
Dr. Rowland: In expanding the definition, the IOM recommended more attention be given to the emotional, spiritual and practical needs of patients and their families. Nobody with cancer does it alone and does it well. It takes a medical team to treat you medically and a secondary team of family and friends to help you get through it. We’re treating cancer as a chronic illness now, and that’s a whole new philosophy. It ensures that palliation does not get “orphaned” at the end of life.
Can doctors palliate and treat an illness at the same time?
Ms. Denicoff: Yes, it should never be an either/or choice. The challenge is that doctors are trained to diagnose and cure illness and patients naturally focus on living and not dying. There’s real avoidance of the ‘elephant in the room’ because culturally we Americans don’t like to discuss death. Things began to improve when the definition of palliative care took on a broader meaning and it was no longer an either/or choice. We began to appreciate palliative care as a way of improving the quality of life for a patient at all stages.
Rowland: It helps to put this in a historical perspective. Early in the 20th century, there was a lot of hope that all diseases could be cured in the way we cured tuberculosis and polio. But in reality, most common medical conditions such as cardiac disease, diabetes, flu, and viruses are palliated. We’re treating the symptoms, not curing the illnesses. With cancer, we are–albeit reluctantly–beginning to accept that we may not necessarily be able to cure the disease, but we can definitely control it for the vast majority of people.
Isn’t palliative care considered to be a sort of extra–not really part of treating the disease?
Ms. Denicoff: Palliative care is actually an integral part of cancer care. For example, when an oncologist is treating a woman with metastatic breast cancer that has spread through the bones, of course a major goal will be to try to stop the spread of disease. But the doctor should also discuss symptom management, long-term prognosis, and what to expect during this course of illness with the patient and their family. None of this should ever be considered extra care, but a regular part of high-quality cancer care.
Dr. Rowland: Cancer can disrupt lives at so many levels. Dealing with the fatigue and pain, with continuing to work or attend school, and concerns over insurance and medical treatments can overwhelm the patient and their families. Palliative care addresses all the communication and decision-making aspects of coping with cancer, as well as the treatment of such medical problems as nausea and lymphedema.
How much does NCI currently spend on palliative care research?
Ms. Denicoff: We currently spend about $28.5 million on investigator-initiated research in palliative care. It’s a complicated figure to analyze, because there are other studies and clinical trials that may improve patient symptoms or supportive care issues. For example, drugs to reduce anemia and fatigue from cancer treatment could be considered palliative care, and are not included in this figure.
How does NCI coordinate palliative care research with other NIH institutes and outside agencies?
Ms. Denicoff: Since 1997, the National Institute of Nursing Research (NINR) was designated the NIH lead institute for end-of-life research since the research they support cuts across all diseases. However, NCI continues to be a co-sponsor of NINR program announcements in end-of-life research along with several other NIH Institutes.
Our broader goal at NCI is to close the research gaps in palliative care across the cancer treatment continuum through funding opportunities, initiatives and partnerships with other agencies.
Dr. Rowland: As part of that effort, the NCI along with many other NIH Institutes sponsored a state-of-the-science conference on “Symptom Management in Cancer: Pain, Depression, and Fatigue.” The findings of this meeting helped determine what we know in some of the major areas of symptom complexities and where we need to fill gaps in the research. These collaborations, partnerships, and open discussions are very important.
What is Partners in Palliative Care?
Ms. Denicoff: After the 2001 IOM report on “Improving Palliative Care for Cancer” suggested NCI take a stronger leadership role in overcoming institutional barriers to palliative care, NCI established an internal palliative care working group. We invited approximately fifteen organizations to a meeting called “Partners in Palliative Care,” with the objectives of sharing strategies, avoiding duplication of effort, and identifying knowledge gaps. It was very exciting to see the exchange between many national and interdisciplinary groups such as the American Cancer Society and the Robert Wood Johnson Foundation, the American Society of Clinical Oncology and other groups representing nurses, social workers, family physicians and hospices.
As a direct result of that meeting, we are working with groups to better integrate palliative care into health professional education programs. The Robert Wood Johnson Foundation (RWJF) funded project known as EPEC, or Education for Physicians on End-of-Life Care, will now be expanded to target oncology professionals (EPEC-O) through an NCI contract and will be disseminated through a partnership with American Society of Clinical Oncology (ASCO). Also, the American Cancer Society, the National Hospice and Palliative Care Organization, and the RWJF continue to work with us on addressing the gaps in patient, family, and caregiver education in palliative care.
Is NCI incorporating information about palliative care into its educational materials?
Dr. Rowland: NCI’s Cancer Information Service recently published a fact sheet about end-of-life issues for family members or caregivers. Still, we have a lot of room for improvement. Our educational materials need to include palliative care and symptom management as part of the treatment process so that patients and family can make informed decisions about interventions across the course of illness or recovery.
Ms. Denicoff: Again, integrating palliative care information into our publications and web content is not an either/or issue of treat or palliate, but a combination of both. We did a content analysis of over 100 current NCI publications and found the majority of our palliative care content deals with symptom management during treatment. But when it came to advanced cancer or end-of-life issues, there was very little about decision-making, communicating with dying patients, or bereavement. NCI’s Office of Education and Special Initiatives is now partnering with other organizations to develop new educational materials on these topics for patients, families, and caregivers.
There are currently some 9.6 million Americans who have experienced and survived cancer, yet still suffer some residual pain or disability. What is NCI doing in this area of palliative care?
Dr. Rowland: In the past two years alone, the Office of Cancer Survivorship has overseen a three-fold increase in the number of survivorship grants. This reflects NCI’s strong commitment to post-treatment research and, in particular, to identifying and finding treatments to prevent or ameliorate chronic and late effects of cancer. At the same time, we recognize that many of the symptom management and end-of-life issues faced by those treated for cancer are comparable to those of people who are treated for other diseases such as chronic obstructive pulmonary disease or Alzheimer’s and hence may not be unique. In fact, most cancer patients are over the age of 65 and have other co-morbid illnesses that must considered when deciding upon treatment regimens. As such, it’s important to acknowledge other forms of palliative care research and to apply the lessons that have been learned across the applicable diseases.
Ms. Denicoff: It’s taking the constant, little steps that will result in real change and the advancement of palliative care. That’s why we need to work with all our partners, to build our research portfolio and encourage researchers to go into the field.
For more information on symptom management and palliative care,please go to http://cancer.gov/researchfunding/announcements/symptommanagement
Photos/Stills
1. Nurse discussing palliative care choices with a patient
2. Doctor discussing palliative care with a family member
