Portland, Ore. -- When it comes to end-of-life issues, the rest of the country considers Oregon a national model. The state leads the country in out-of-hospital deaths. Two-thirds of all Oregonians choose to die at home or in a long-term care setting. There are a number of reasons for Oregon's low in-hospital death rate, including the state's high rate of living will usage, respect for patients' preferences, and attention to care alternatives. In an effort to learn more about Oregonians' end-of-life decisions, the National Institute of Nursing Research at the National Institutes of Health is funding a project, which begins April 1, to study why patients choose to die in community settings and how these decisions impact their families. The Oregon Health Sciences University's School of Nursing and the Center for Ethics in Health Care will jointly conduct the research.
"Major national reports show that people are not satisfied with care at the end-of-life," said Patricia A. Grady, Ph.D., R.N., F.A.A.N., director of the NINR. "The results from this Oregon study can make important contributions to the scientific knowledge base in this relatively new area of research."
Investigators will focus on a number of end-of-life issues, including the decision-making process, patient pain concerns, and other factors that may cause stress for the family. In addition, the project will test the hypothesis that cancer and ethnicity relate to patients' decisions regarding advanced directives and reports of pain. The study will enhance understanding of the factors that affect how care is delivered.
"Oregon is in a unique position in that it offers more services and options for dying patients than many other states in the country," said Virginia Tilden, D.N.Sc., R.N., F.A.A.N., associate dean for research at OHSU's School of Nursing and co-principal investigator of the study. "This is an opportunity to gauge this state's success in providing care during a patient's final days and to track areas still needing improvement."
The study's other co-principal investigator, Susan Tolle, M.D., professor of internal medicine in the School of Medicine and director of the Center for Ethics in Health Care at OHSU, said the knowledge gained through this research will not only benefit Oregonians, but also families across the country. "This information has the potential to improve end-of-life care across Oregon," said Tolle. "The results will also serve as a comparison for other states as changes occur in end-of-life care over the next decade."
Study information will be obtained through phone interviews with 1,000 family members within two to four months of a patient's death. "Study data will shed light on areas where services still fall short of meeting patient and family needs," said Tilden.