Two papers by researchers from the University of Alabama at Birmingham School of Nursing highlight the need for a "culture shift" by clinicians and the general public to engage palliative care services long before a person reaches the final stage of life.
The studies on two parts of the ENABLE III trial, both online ahead of print in the Journal of Clinical Oncology (doi: 10.1200/JCO.2014.58.6362 and doi: 10.1200/JCO.2014.58.7824) report on 207 patients with advanced cancer and 122 of their family caregivers.
The results show that palliative care delivered soon after a diagnosis of advanced cancer had statistically improved beneficial effects on patient survival and family caregiver depression and burden when compared with care provided 12 weeks later. The one-year survival rate for patients was 63 percent for those who received early palliative care, compared with 48 percent in the group whose care was delayed.
"Palliative care is about providing an extra layer of support so that patients can live well and families can be supported," the study's principal investigator, Marie Bakitas, DNSc, Professor and the Marie L. O'Koren Endowed Chair in the School of Nursing, said in a news release. "These data support the importance of providing this care at the same time as medical treatments aimed at fully curing disease. Too often, that is not the case."
Added Nick Dionne-Odom, PhD, a postdoctoral fellow in the School of Nursing and lead author of the family caregiver ENABLE trial: "If patients and clinicians wait to introduce palliative care when a person is actively dying, it limits the full range of services that patients and their families can receive. This means that palliative care is mistakenly associated solely with end-of-life care. This is unfortunate. Our research shows that integration of palliative care earlier in the cancer trajectory benefits both patients and their family caregivers."
Family caregivers who receive this support and education have greater capacity and skills to deliver high-quality support to patients, the authors said. Likewise, providing patients with palliative care early eases the burden on families, who deliver the majority of care and psychosocial support in the home.
"Anyone who has been through cancer with a family member can attest to the physical, psychological, and existential burden it places on both parties," Dionne-Odom said. "Receiving this extra layer of support early and at the same time as curative medical treatments is vital for helping patients and their family caregivers develop the coping and other skills needed for the ups and downs of their journey."
Two other shifts in the view of palliative care also are needed, Bakitas said: "Reimbursement mechanisms need to incentivize this care to be offered regardless of six-month prognosis, which is the current hospice-benefit requirement. Also, increased clinician education is needed to train both specialists and general practitioners in palliative care."
The authors note that mechanisms still need to be identified that explain the effects of early palliative care, and they are looking at the impact of depression and biological mechanisms that might contribute to this explanation.
Bakitas was recently awarded a five-year, $3.5 million National Institute of Nursing Research R01 grant to study whether palliative care provided to advanced heart-failure patients while they are well results in a better quality of life, improved mood, and less symptom distress/burden for patients and/or caregivers when compared with usual heart-failure care. It will test this similar intervention using materials and an approach adapted from the ENABLE cancer intervention.