A Closer Look
Treating the Whole Person in the City of Hope Lung Cancer Study
Dr. Betty Ferrrell and Tami Borneman are colleagues at City of Hope’s Beckman Research Center, where they devote themselves to palliative care and quality-of-life issues.
When Dr. Betty Ferrell got her Ph.D. in 1984, she already had 7 years of work as an oncology nurse behind her, and she had absorbed some clinic-tested insights. “Fatigue wastes time, and time is precious,” a patient once told her, and she came to realize that “fatigue is really the existential crisis of cancer.” Symptoms like fatigue, pain, and other inevitable side effects of cancer treatment were dominating the lives of her patients, but she often found that clinicians and researchers were reluctant to address or even acknowledge this fact.
“And when I wanted to study these symptoms as a researcher, I ran into every imaginable brick wall,” she recalled, referring to resistance from sponsors, funders, the institutional review boards that oversee clinical studies, and the cancer research community in general. It was the culture of oncology in America, she said—focused on treating the tumor while pretty much ignoring the human being who was suffering from the disease.
Twenty-six years and more than 300 publications later, Dr. Ferrell believes, “we’ve actually pushed the rock a ways up this huge mountain.” In 2003, the Institute of Medicine released Improving Palliative Care for Cancer, which included a recommendation to “provide information about palliative care throughout the course of disease.” What was needed to dislodge that rock of institutional culture was nothing less than a paradigm shift in oncology.
ALSO IN THE JOURNALS
In 2006, the NCI Cancer Bulletin featured a story about Dr. Ferrell’s implementation of a hospital-wide system called Passport to Comfort, which incorporated patient education into a teaching program that addressed barriers to adequate symptom management at City of Hope. Four years later, Dr. Ferrell and her colleagues have found that their program significantly improved pain and fatigue among patients. The study results appeared in the March Journal of Pain and Symptom Management.
“[This] is one of the first reported trials to translate the National Comprehensive Cancer Network pain and fatigue guidelines into a proven educational intervention,” said lead author Tami Borneman, a nurse and senior research specialist at City of Hope. “Because the intervention integrates information into usual care, we are eager to see the model translated into actual clinical settings.”
Part of that shift is a new NCI-funded program project on palliative care that Dr. Ferrell is leading at City of Hope Comprehensive Cancer Research Center in Duarte, CA, outside of Los Angeles. The new program addresses the physical, psychological, social, and spiritual needs of patients with non-small cell lung cancer and their families.
Lung Cancer as a Context for the Future of Palliative Care
Currently, some 219,000 people in the United States are diagnosed with lung cancer each year, and more than 150,000 die annually. In Dr. Ferrell’s view, “Lung cancer is an important context [in which to study palliative care] because great societal costs come from a disease with such high prevalence, morbidity, and mortality.”
“It is simply not acceptable that the hundreds of thousands who will die should do so without their real needs being met. It is not a question of allocating resources to either cancer treatment or the psychosocial needs of patients. I want both, and I expect the public and the people I love to get both,” said Dr. Ferrell, whose mother died of lung cancer.
Integrating these aspects of oncology is what she and others in the palliative care community have been advocating. In a sense, Dr. Ferrell sees the City of Hope palliative care lung study as the culmination of 25 years of research.
“For the first time, the traditional disease focus found in oncology is being woven together with a meaningful palliative care intervention with validated outcomes,” she said. “We hope this model will demonstrate the key principles of this synthesis.”
“This study is an ideal setting for this tailored research,” said Dr. Ann O’Mara, who leads the Palliative Care Research Program at NCI. Program projects, she explained, often address a larger context than a single study. “People with non-small cell lung cancer are an understudied population when it comes to palliative care, and these patients probably need many of the components that we believe are part of effective interdisciplinary care,” she said.
The City of Hope study includes parallel trials for different populations of lung cancer patients: 207 patients with early-stage disease in one project, and 326 with late-stage disease in another, with nearly identical aims and components. Dr. O’Mara thinks this approach could provide useful comparisons across the spectrum of disease.
A third project in the overall study is recruiting the informal caregiver(s) for each patient in the first two projects to test a palliative care intervention for family caregivers. Not only will the enrolled caregivers pick up skills and knowledge to better support the patients’ needs, but their own quality of life will be measured. Data on caregiver effectiveness will be evaluated according to disease stage and socio-demographic characteristics and compared with data from family caregivers who did not get the supportive intervention.
“It is families, not just people, who get cancer,” Dr. Ferrell explained. A diagnosis of lung cancer often brings emotional and financial burdens that impact others in the family, which points to another vital and strategic aspect of palliative care.
“We are living in an era of outpatient medicine,” she explained. “When I was starting out, people with symptoms or problems would call the hospital, routinely be invited in, and often stay for weeks as the system provided more care. But in the current economic model family caregivers have become ‘professionals’ who are caring for the patients. This is an urgent social issue in public health,” she said.
Oncology: An Existential Relationship
“We have an important opportunity,” said Dr. Ferrell. “I want to transform lung cancer care in the United States. Hundreds of thousands of people each year are directly affected by lung cancer, and we need to see them as individuals, not statistics.”
But she fully agreed that the world of oncology needs data to support evidence-based practice. “If I want my colleagues to treat cancer patients with the integrated care model that we are testing in our program at City of Hope, I’ve got to show them rigorous evidence,” she said. By 2014, she hopes that is exactly what this 5-year, $11 million project will produce.
“If you can move beyond seeing cancer as a biological event and recognize it as a human experience, it will change you,” said Dr. Ferrell. Only by embracing this approach, she went on, will patients “get the interdisciplinary care, support, and understanding they need and deserve.”