Homelessness and End of Life Care: Methods to Study Health Disparities in Disadvantaged Populations

Additional contributors: Dawn Petroskas (retention efforts); Nancy Ulvestad (guidance and organization); Melanie Wall (data analysis); John Song, Dianne Bartels and Edward Ratner (faculty mentors).There is a high prevalence of homelessness in St. Paul and Minneapolis as well as the United States. Estimates of the number of homelessness in the United States range up to several million. According to the Wilder Research Foundation, in the Twin Cities metro area over 4,000 youth and adults are in temporary housing programs and over 600 are unsheltered. “Homeless” for this study is defined as having no regular place to live (i.e. having to stay in a shelter, a hotel paid for with a voucher, a friend’s house, an abandoned building, outdoors or other places not intended for sleeping). Among disadvantaged populations, homeless individuals experience the greatest risk of death, barriers to healthcare and lack of resources and close relationships deemed necessary for appropriate end of life (EOL) care. Homeless individuals also utilize the healthcare system at a significantly higher rate than housed individuals. They are admitted to the emergency room and hospitalized at almost four times the rate of the general population of the United States. This is in a large part a consequence of their inability to access routine health care due to competing needs and lack of adequate health insurance. Although homeless individuals experience such high rates of mortality and hospitalization, their attitudes, values and desires regarding EOL care had yet to be studied. The major objective of this study was to test an advanced directive (AD) intervention in the homeless population of Minneapolis and St. Paul. Insights from this project will also be significant in the following ways: they will address the EOL concerns of homeless people and provide the basis to test the needs of others who are separated from their loved ones and/or experience fragmented, episodic healthcare. It is evident that homelessness research is particularly needed within the larger body of research on health disparities in disadvantaged populations. However, research on the health disparities of homelessness populations is scarce. This is in a large part due to the intimidating methodological challenges facing those who seek to study homeless populations. The itinerant nature of the homeless population is the greatest challenge that effects the retention rate of studies of homeless individuals. Retention rates in studies of homeless populations range from 30 to 86 percent. Previously used retention strategies included: outreach, phone tracking and gathering of anchoring points (information that will help locate an individual, such as an emergency contact). In this investigation, we employed both traditional and innovative methods to increase retention. We found that the effectiveness of these strategies varied considerably among sites. These findings identify the challenges and innovative methods utilized to study homeless populations and pave the way for further research of disadvantaged populations in the United States