The End-of-Life Care Research Program

Posted by on Oct 5, 2012 in Blog, Featured | Comments Off

The End-of-Life Care Research Program

The University of Washington End-of-life Care Research Program is an internationally known research center in palliative and end-of-life care that has been in existence for over 10 years and has contributed to the science of measuring and improving the quality of palliative and end-of-life care. The Program, lead by Dr. J.Randall Curtis and Dr. Ruth A. Engelberg, is housed in a 1500 square-foot suite of offices on the Harborview Medical Center campus of the University of Washington.   The Program team is currently funded by two R01 Awards and a K24 Award from NIH as well as additional funding from the National Palliative Care Research Center.  Full-time staff of the research team include coordinators, nurses, analysts, abstractors, and assistants.

Dr. Curtis, the Director of the Program, is a pulmonary and critical care physician and has focused his research on measuring and improving end-of-life care for patients with acute and chronic illness.  Dr. Engelberg, the Co-director of the Research Program, is an educational psychologist by training and an accomplished health services researcher with a focus on measurement and survey development.

The End-of-Life Care Research Program is a resource in a number of important areas for clinical and health services researchers.  These include:  1) recruitment and retention of participants for studies addressing sensitive topics such as end-of-life care; 2) survey development and implementation; 3) management and analyses of large datasets; 4) design and implementation of complex clinical and health services research study designs including longitudinal, clustered, and repeated measures designs; 5) protection of human subjects and the development and implementation of applications for Institutional Review Boards; and 6) design and implementation of interventions in clinical practice.

Overall Purpose

The mission of the End-of-life Care Research Program is to improve the quality of palliative and end-of-life care for patients and their families. The End-of-Life Care Research Program is composed of clinical and health services investigators and staff working on research projects that have as their overall goal the improvement of palliative and end-of-life care. In addition to providing core support for these specific projects, the Program serves as a resource to other investigators conducting related research.

It is also a goal of the Program to participate in education by providing the resources for medical students, medical residents, physician-fellows, nurses, and others to participate in these projects and conduct related research projects. The Program personnel also conduct clinical education for medical and nursing staff interested in improving patient-clinician communication about end-of-life care and improving the quality of care at the end of life.

Finally, several of the assessment tools being developed and validated by the Program will be used in quality improvement projects targeting end-of-life care. The ultimate goal of these instruments is to improve care at the end of life.

Current Specific Research Goals

  • Measure and improve the quality of patient-clinician communication about end-of-life care.
  • Identify and overcome barriers to patient-clinician communication about end-of-life care.
  • Develop interventions that will improve the quality of patient-clinician communication about end-of-life care and the quality of care at the end of life.
  • Develop a series of process and outcome measures that can be used as end-points in evaluations of end-of-life care:  the quality of communication about end-of-life care; the quality of dying and death; the quality of physician skill at providing end-of-life care; and the quality of clinician-family communication in the ICU