Lung cancer patients rarely worry just about following their treatment plan.
A nagging cough and frequent pain can be a constant burden of illness. Depression and anxiety are common, and family life can become strained during treatment.
Through their one-on-one work with patients and their families, City of Hope researchers have learned what these patients go through. And over the last several years, they developed and refined an educational program that addresses the unique needs of lung cancer patients and their family caregivers.
|From left, nurses Catherine Del Ferraro, Anna Cathy Williams and Gloria Juarez discuss a lung cancer patient’s plan of care. (Photo by Alicia Di Rado)|
The program aims to profoundly influence how health professionals nationwide will work with the hundreds of thousands of people diagnosed with lung cancer in the years ahead.
The five-year project — dubbed “Palliative Care for Patients with Lung Cancer” — began in 2009. Its three subprojects focus on early-stage lung cancer, late-stage lung cancer and family caregivers of lung cancer patients.
The team’s initial findings show that lung cancer patients and family members need significant support. Despite patients’ pain, psychological and social issues and struggles with spirituality, “we’re seeing that patients often don’t get referred to support services until it’s way too late,” said Betty Ferrell, Ph.D., R.N., professor in the Division of Nursing Research and Education and the project’s principal investigator.
National research has shown that lung cancer patients have more severe symptoms and distress than patients with other cancers at the same stage. Yet many patients who need palliative care — that’s help for pain, distress and end-of-life issues — fail to get that help.
In the program, a nurse meets with each patient every week for four weeks to talk about physical, psychological, social and spiritual issues. Patients receive a notebook containing educational information, and the nurse helps each patient come up with an action plan to counter their symptoms and challenges.
A nurse meets with family caregivers, too. “We teach caregivers how best to care for their family member and manage their symptoms, and how to care for themselves as well,” Ferrell said.
In addition, the program brings together health professionals from many disciplines to create each patient’s care plan. They integrate palliative care and other Department of Supportive Care Medicine services from the beginning of treatment.
“We know it’s a huge culture change, but if ever there was a group that needs us all working together, it’s lung cancer patients,” she said.
Researchers nationwide have given Ferrell and her colleagues a glimpse into the need for these programs. “People are hungry for resources across the country,” she said. “They’re already asking for our findings.”
The shared burden of lung cancer
Lung cancer patients and their family caregivers often face unique challenges due to the nature of the disease.
Among late-stage lung cancer patients:
- 71 percent had at least one other chronic illness and 20 percent had a prior cancer diagnosis;
- lack of energy, difficulty sleeping, worrying, difficulty breathing and pain were major issues;
- many were concerned about sexuality, were afraid their disease was getting worse, and had an overall poor quality of life; and
- spiritual struggles included lack of meaning, lack of purpose and trouble feeling at peace.
Caregivers had issues, as well:
- 60 percent had chronic illnesses of their own;
- they were distressed about their family member’s diagnosis and about its effect on the family;
- they experienced fear of metastasis or recurrence, the stress of living with uncertainty and distress over the patient’s treatment; and
- they worried about demands on their time and needed help in navigating health services and accessing community resources and health information.