Wednesday, June 4, 2014
Dartmouth researchers have found that those caring for patients with advanced cancer experienced reduced depression and felt less burdened by caregiving tasks when palliative support services were offered soon after the patient’s diagnosis. They presented their findings at the American Society of Clinical Oncologist (ASCO) annual meeting in Chicago on June 3, 2014.
“Family caregivers are a crucial part of the patient care team. Because the well-being of one affects the well-being of the other, both parties benefit when caregivers receive palliative care,” said senior study author Marie Bakitas, DNSc, associate professor of Medicine at the Geisel School of Medicine at Dartmouth and L. O'Koren Endowed Chair and Professor at the University of Alabama School of Nursing in Birmingham. “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 a better quality of life.”
The findings presented at ASCO were part of a larger ENABLE (Educate, Nurture, Advise, Before Life End) study on palliative care. Bakitas presented the patient outcomes from the ENABLE III study. The lead author on the caregiver study, J. Nicholas Dionne-Odom, Ph.D., RN, co-investigator formerly of the Geisel School of Medicine at Dartmouth and currently a postdoctoral fellow in the UAB Cancer Prevention and Control Training Program and researcher in the School of Nursing, presented on the caregiver outcomes.
For the caregiver section of the study, 122 family caregivers of patients with recurrent or metastatic cancer received palliative care support over the phone with an advanced practice nurse specially trained in delivering palliative care. The phone sessions covered common caregiving challenges including how to use creativity, optimism, planning, and expert information to manage problems; how to effectively partner with the cancer patient to manage symptoms; self-care (healthy eating, exercise, and relaxation); how to build a support network; and decision making and advance care planning. After these sessions, the caregivers received monthly supportive care follow-up phone calls. One group of caregivers started this phone-based program within two weeks of agreeing to participate in the study, while the other group started 12 weeks later.
The study results suggest that the earlier palliative care services are introduced to caregivers, the better they will be able to cope with the caregiving experience. Researchers found that overall quality of life, depression, and feelings of being overwhelmed by the demands of caregiving all improved in the group that started the program immediately compared with those who started later.
Dionne-Odom noted that there are few organized palliative care programs for caregivers of patients with advanced cancer, and reimbursement for this type of counseling is very limited. An online family care navigator tool from the Family Caregiver Alliance’s National Center on Caregiving website may help family givers find assistance in their local area.
Researchers surveyed 50 physicians and 45 nurse practitioners or physician assistants at three practices at the Mayo Clinic in Rochester, Minnesota and the Mayo Clinic Health System. Ninety-five clinicians completed the survey.
Among the findings:
- Only 12 percent of the healthcare providers reported having routine yearly discussions about end-of-life care as advocated by the American Heart Association.
- Thirty percent of the group reported having little confidence in discussing or providing end-of-life care.
- Among the 52 percent who said they felt hesitant mentioning end-of-life-care, 21 percent cited their perceptions that patients weren’t ready to talk about the issue; 11 percent said they felt uncomfortable bringing it up; 9 percent said they worried about destroying a sense of hope; and 8 percent said they lacked time.
Despite these perceptions, heart failure specialists and community cardiology clinicians were far more likely to have referred heart failure patients to palliative care within the past year than primary care physicians (89 percent versus 21 percent).
“Providers did express an interest in receiving additional training to develop the skills and confidence to talk about end-of-life care with their patients with heart failure,” said Shannon Dunlay, M.D., M.S., the study’s lead researcher and a cardiologist at the Mayo Clinic in Rochester, Minnesota.
There is no evidence that bringing up end-of-life care ruins hope, and it may ease anxiety for some patients and families, Dunlay said.
About 5.1 million Americans have heart failure and about half of those die within five years of their diagnosis, according to American Heart Association statistics.
“Communication is key but in many hospitals and health systems this can be difficult as patients often have multiple healthcare providers,” Dunlay said. “Sometimes it’s helpful to pick up the phone and have a provider-to-provider conversation so that everybody is on the same page. Incorporating end-of-life conversations into the ongoing, routine care of the patient is important as goals and preferences can change over time and patients and their families can feel more comfortable and confident in relaying their wishes to multiple providers.”