CHICAGO—Early rather than late palliative care support brought benefits to caregivers as well as the patients, making it easier for the caregivers to cope. That was the conclusion of a study reported here at the American Society of Clinical Oncology Annual Meeting (Abstract LBA9513).
“Because the well-being of one affects the well-being of the other in a reciprocal way, both parties benefit when caregivers receive palliative care,” said the study's senior author, Marie Bakitas, DNSc, the Marie L. O'Koren Endowed Chair and Professor at the University of Alabama (UAB) School of Nursing.
Speaking at an ASCO news conference that featured key studies showing improved patient care and quality of life, she discussed the findings from the study, the National Institute for Nursing Research-funded Educate Nurture Advise Before Life Ends (ENABLE) III trial (first author was J. Nicholas Dionne-Odom, PhD, also of UAB. The study included 207 patients with recurrent or metastatic cancer and 122 family caregivers.
Both patients and caregivers received palliative care support at the same time, which began with personal meetings with advanced-practice palliative care nurses (when practically possible) and continued with palliative support by telephone. (The patient component of support was the subject of a second report: Abstract 9512).
It is not unusual for cancer patients with advanced disease to need up to eight hours of daily assistance from family caregivers, who must manage symptoms and give physical, personal, and emotional support, Bakitas noted. “Caregivers can experience psychological stress equal to and sometimes greater than the person with cancer, which can lead to poor physical health and even a higher risk of death. The burden of family caregiving is truly an under-recognized public health crisis.”
She and her colleagues hypothesized that immediate, as compared with delayed, palliative support intervention to a family caregiver would bring improvements in quality of life, could reduce the incidence of depression, and might lighten caregiver perception of burden.
The patients in the study were randomized to start the support “package”—an interview plus phone calls—from the time of diagnosis or 12 weeks later. Baseline data were collected at the outset and then six, 12, 18, and 24 weeks later and subsequently every three months.
Each caregiver had three structured phone calls from the nurse coach—who followed a guidebook to discuss optimism and planning and managing problems creatively. The nurses also gave expert information on self-care, healthy eating, exercise, and relaxation and discussed with the caregivers how to make decisions and partner effectively with others in managing symptoms.
There were benefits at 12 weeks: “We found that when caregivers began receiving palliative care support around the time of the patient's advanced cancer diagnosis, they had less depression, perceived themselves to be less burdened by performing caregiving tasks, and had better quality of life,” Bakitas said.
“Offering concurrent palliative care to patients and family caregivers while patients are still receiving cancer treatments would provide caregivers with the greatest benefit.”
The moderator of the news conference, Patricia Ganz, MD, FASCO, Director of Cancer Prevention and Control Research at UCLA's Jonsson Comprehensive Cancer Center, called the study “innovative,” and said, “Improving the mental health and well-being of the caregiver is an essential component of good palliative care. We are talking about an intervention that not only enhances the quality of life for the caregiver but also enhances the survival of the patient.”
The ASCO-designated expert at the briefing, Gregory A. Masters, Associate Professor at Thomas Jefferson University Medical School and Director of the Medical Oncology Fellowship at Christiana Care in Wilmington, Delaware, said, “Part of improving patients' quality of life is including their care at home—and that's where the caregivers come in.”
But he said he wasn't yet convinced that the longer survival of patients whose caregivers received early telephone-based support in this retrospectively documented assessment was caused by the intervention. “But on the other hand, there's no down side to educating patients and families and providing better care for the patients and more support for the family. I'm all for educating patients and educating and supporting caregivers.”