September 20, 2013 | by Nicole White
As cancer care advances, allowing patients to recover from surgeries at home and receive the bulk of their care on an outpatient basis, the primary caregivers aren’t doctors or nurses. They’re family members.
“For 99 percent of the time, cancer care is provided at home by the family,” said Betty Ferrell, Ph.D., R.N., director of Nursing Research and Education at City of Hope. “Patients are in the clinic a few hours. People are hospitalized less and less often. It’s really the family providing the care, and they’re doing it 24 hours a day. Now, with health care reform, the movement toward home and family as caregiver that has been on a steep incline for the last 20 years is really increasing exponentially.”
Ferrell has led City of Hope in a five-year National Cancer Institute-funded study to provide comprehensive services for lung cancer patients and their families, focused on quality-of-life issues from the start of treatment. The program incorporates significant education and support for caregivers, to both educate them on how to care for their loved ones and how to take care of themselves during a stressful, challenging time.
Often, palliative care is mistakenly believed to be synonymous with end-of-life care. But the goal of palliative care is to improve quality of life by managing pain, symptoms and psychological or spiritual concerns associated with illness – all good practices to begin as soon as a patient starts cancer treatment. (A recent Institute of Medicine report backs this up.)
The lung cancer program focuses on four quality-of-life areas: physical well-being and symptoms, psychological well-being, social well-being and spiritual well-being. Patients are assessed by a nurse, answering questions about every aspect of their lives. These answers provide a fuller picture of patients and how their lives might be affected by cancer – revealing, for example, what other illnesses they may be facing, who cares for them, what family members they usually care for, and any major recent life changes.
Then patients are given one-on-one education in each of these areas, taking into account whether they are diagnosed with early- or late-stage disease. But the program doesn’t stop with patients. A patient’s primary caregiver receives comprehensive one-on-one training to prepare them to manage the patient’s – and their own – quality of life.
The resulting information is shared in weekly meetings with the patient’s full team of caregivers, including nurses, surgeons, oncologists, social workers, chaplaincy and mental health professionals.
“We really believe this is the model case,” Ferrell said. “We started with lung cancer because it’s the toughest in some ways. There are so many things that make lung cancer really challenging. Many patients are dealing with late-stage disease; often prognosis is poor.”
The project is entering its fifth year, but already City of Hope nurses are applying what they’ve learned to caring for patients with other types of cancers. Efforts are underway to spread the program to pancreatic and ovarian cancer patients, as well as surgical patients. This summer, Ferrell started a program to replicate the family-caregiver portion of the lung cancer program in low-income families.
“It’s hard enough to be a family caregiver if you have resources,” she said. “If you don’t, it’s really hard.”
The courses for caregivers are broken down into chapters that focus on physical, psychological, social and spiritual issues, with caregivers taught how they can assist the cancer patient in each of these areas. They're also taught to take care of themselves – resulting in written self-care plans for each area.
Advice for people caring for lung cancer patients – or any type of patient – includes:
Caregivers should not neglect their physical well-being, their psychological needs, their need for social connection and support, or their spiritual needs.
“Cancer care isn’t just about treating the tumor,” Ferrell said. “It’s not even about only treating the patient. We need to treat and support their caregivers and families as well.
The lung cancer study is supported by National Cancer Institute grant 1POCA136396-0141.