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While focusing much energy on providing good end-of-life (EOL) care, the American health care system has ignored a specific population made up of those who die without loved ones by their sides, regular medical care, or safe and stable housing. Therefore, we know little about the concerns of those less fortunate. With funding by the National Institutes of Health (NIH), Drs. John Song, MD, MPH, MAT, Edward Ratner, MD, and Dianne Bartels PHD, RN, MA, have conducted research showing that people who are homeless have unique concerns regarding care as they near the end of their lives. This team of investigators is developing approaches to implement and evaluate interventions to address these concerns.
Substantial preliminary work by this team provides the empirical foundation for this current effort. People without homes who have participated in focus groups have indicated that some concerns are similar to previously studied populations such as pain control and desire for compassionate caregivers. Other concerns were entirely unique and previously unreported — participants worried about what would happen to their bodies after death, and whether anyone would know that they had died (Journal of Clinical Ethics, Fall 2005).
In a meeting sponsored by the University of Minnesota’s Consortium on Law and Values in Health, Environment, and the Life Sciences, investigators have convened a meeting of homeless people, shelter providers, street case workers, hospice providers, Minnesota Department of Health representatives, and the Medical Examiner’s office to identify priorities for addressing end of life needs. Guided by their recommendations, investigators conducted a pilot project in 2006 to further examine participant’s knowledge and concerns about end of life care, and will offer an opportunity to do advance care planning so their wishes may be known and honored in the eventuality of serious injury or death.