Case Western Reserve nursing researcher to study how to improve end-of-life care with $3.3 million National Cancer Institute grant

More than 600,000 people in the United States will die of cancer this year, according to the National Cancer Institute (NCI). Many will receive care they didn’t want in their final stages of life, leaving their caregivers with unresolved grief and regret.

But with a $3.3 million grant from NCI at the National Institutes of Health, Sara L. Douglas, the Gertrude Perkins Oliva Professor in Oncology Nursing at Case Western Reserve University’s Frances Payne Bolton School of Nursing, will study the variables that determine high-quality end-of-life care for both patients and their caregivers.

The five-year study focuses on enrolling 300 patients with stage four lung, pancreatic and gastrointestinal cancers and their caregivers.  

Douglas, who has conducted research with patients with advanced cancer and their caregivers for about 10 years, and her team will collect data to gauge whether patients are: 

• Receiving care in line with their wishes.
• If the objectives of care for patients and caregivers coincide.
• And whether the caregiver is feeling guilty or suffering from complicated grief as a result of their loved one’s passing.

Poor-quality end-of-life care has been associated with prolonged hospital stays, poor patient and caregiver quality of life and prolonged patient suffering. However, despite the important role of the caregiver in end-of-life cancer care, outcomes for caregivers after the patient has died haven’t been fully explored, Douglas said.

“The delivery of quality end-of-life care is an important component of cancer care and involves not only the patient but their family as well,” she said. “Decades of research have shown that current approaches to the delivery of quality end-of-life care have not been successful in providing care that is consistent with patients’ wishes or in enhancing family caregivers’ post-death adjustment.”

Douglas said their research is believed to be the first on how to define quality end-of-life care as care that benefits both the patient and caregiver. 

“We hope that findings from this study will lead to interventions that will enhance communication and other identified factors that improve quality end-of-life care for both patients and their caregivers,” she said.