The choice to die at home surrounded by loved ones comes too late for some cancer patients. Why that happens and how to change the process so that more patients may die as they wish is the focus of new research the Frances Payne Bolton School of Nursing at Case Western Reserve University will pursue with a four-year, $2.06 million grant from the National Institute of Nursing Research (NINR).
The research project, "Mapping Complex Influences of Aggressiveness of End of Life Cancer Care," will contribute to NINR's ongoing research to better understand the decision-making process for end-of-life (EOL) choices.
Researchers from nursing and the school of medicine will examine how oncologists, patients, caregivers and oncology nurses interact and influence EOL decisions for advanced cancer patients. The goal is to improve the quality of life for patients and others involved in making those decisions by consensus.
Traditionally, the EOL conversation primarily takes place between the physician and patient. "It isn't working," said Sara Douglas, associate professor of nursing and the study's lead investigator. "Missing are the caregivers and nurses, who also have a strong influence on what the patient does. This is a complex issue."
Previous studies done by CWRU researchers have shown that families who discuss these sensitive issues and carried out the patient's wishes suffer less regret or second-guessing after the loved one has died.
The researchers see two major gaps in prior studies: They mainly focused on just one perspective—either the doctor's or patient's—in the decision-making process. And they overlooked interaction between patients and physicians, and between caregivers and oncology nurses.
"We are going to collect information to describe a variety of phenomenon that we think relate in complex ways to decisions made at the end of life," Douglas said.
Douglas—with co-investigators Barbara Daly, PhD, RN, the Gertrude Perkins Oliva Professor in Oncology; Neal Meropol, MD, the Dr. Lester E. Coleman, Jr. Professor of Cancer Research and Therapeutics and chief of the Division of Hematology and Oncology at the School of Medicine; and Christopher Burant, PhD, assistant professor at the nursing school—will recruit between 300 and 350 patients with stage 3 or 4 gastrointestinal, pancreatic or lung cancers and receiving care at the Seidman Cancer Center at University Hospitals Case Medical Center and at University Hospital's Chagrin Highlands Health Center.
The three cancers were chosen because of similar trajectories and treatment.
Every two months during the four-year study and during patient visits to the physician, researchers will ask the patient, doctor, nurse and caregiver about changes in—and attitudes towards—treatment, religious or cultural views and patient preferences.
By following how the four individuals react over time, researchers hope to fill gaps in what is now known about EOL decision-making.
Ideally, this conversation should start earlier, when families still have time to plan, Douglas said.
But what unfortunately happens for many patients is that aggressive treatments continue to a point where it leaves the patient and family with a financial and personal burden, she said. As a result, there may be little opportunity for the patient to benefit from care focused on quality of life over length of life—the type of care that hospice can provide at home.