Engaging Homeless Persons in End of Life Preparations

Abstract

BACKGROUND: There are no prospective studies that have investigated the effects of an intervention to improve end of life (EOL) care in an underserved population. OBJECTIVE:To determine whether homeless persons will complete an advance directive (AD). DESIGN:Randomized trial comparing two modes of providing an opportunity for homeless persons to complete an AD. Half of the subjects were randomized to a self-guided group (SG) who were given an AD and written instructions; the other half were given the same material but, in addition, were offered the opportunity to receive guidance to complete the AD (CG). PARTICIPANTS: Fifty-nine homeless persons recruited from a drop-in center.MEASURES: Rate of AD completion and baseline and 3-month follow-up EOL-related knowledge, attitudes, and behaviors. RESULTS:The overall AD completion rate was 44%, with a statistically significant higher completion rate of 59% in the CG group compared to 30% in the self-guided only group. Frequency of worry about death decreased among those who filled out an AD from 50% to 12.5%, and also among those who did not (25% to 12.5%) (p< .05). Among those who filled out an AD, there were increases in plans to write down EOL wishes (56% to 100%; p< .05) and plans to talk about these wishes with someone (63% to 94%; p< .05).CONCLUSION: This study demonstrates that people living in dire economic and social situations will complete an AD when offered the opportunity. While offering guidance resulted in higher rates of completion; even a simple self-guided AD process can achieve completion of ADs in this population. BACKGROUNDImproving end of life (EOL) care is an important goal of the US health system 1 . One main finding of the NIH State of the Science conference on EOL care was that the majority of EOL research has been conducted on narrowly defined populations 2 . Consensus recommendations included more study of under-represented populations, such as the underserved or underinsured. The limited EOL research examining individuals from lower socioeconomic strata is mainly descriptive but indicates that disparities exist in the delivery and experience of EOL care.A core process in good EOL care is advance care planning (ACP) and writing advance directives (ADs) 1 , but these are known to occur less often within disadvantaged populations. There are, for example, associations between lower levels of education, socioeconomic (SES) and insurance status, minority status and lower completion rates of ADs 3-9.Homeless persons face the most disadvantaged financial and social circumstances. Poverty is the greatest risk factor for homelessness 10 Recent empirical work has demonstrated that homeless persons are concerned about EOL care [28][29][30][31][32] , and have unique challenges, barriers, and wishes when seeking or obtaining EOL care [28][29][30][31] . One normative theme that emerges from this nascent literature is the prescription for making one's EOL wishes known, particularly through written means, such as ADs [28][29][30][31] . However, in additio...

“I'm Sitting Here By Myself …”: Experiences of Patients with Serious Illness at an Urban Public Hospital

“…We identified themes similar to Song and associates' 13,14,26,27 work with homeless persons who were not seriously ill: a desire to discuss end-of-life concerns, seeing death as a sudden and often violent phenomenon, concerns about dying alone, fear that the body will not be respected after passing away, poor social support, poor provider attitudes causing barriers for care such as pain management, and the importance of religion. We confirm how lacking or strained relationships are common in this population and greatly influence the end-of-life experience.…”

“…26 Descriptive studies of the homeless found unique attitudes, end-of-life preferences, and barriers to care, but the study participants did not have life-limiting illness. 13,14,[26][27][28] Although the disenfranchised frequently receive end-of-life care in the hospital, little research focuses on the experiences of underserved patients in this setting. 22 Therefore, we interviewed seriously ill 1 inpatients at an urban public hospital and conducted a qualitative analysis to better understand their concerns, preferences, and perspectives on improving end-of-life care.…”

Cuidados paliativos en personas sin hogar

“…A los que se añade la necesidad de mejorar el documento de decisiones anticipadas, para que sea un proceso de establecimiento de prioridades en el paciente, rodeando el proceso de respeto, comprensión y conexión humana (Tarzian, Neal y O'Neil, 2005). Song et al (2008) mostraron que el trabajar sobre un documento de toma de decisiones anticipadas disminuye significativamente los miedos relacionados con la muerte.…”

Chronically homeless persons’ participation in an advance directive intervention: A cohort study

“…Training involved a review of literature on advance directives and the unique end-of-life care needs of homeless persons. 4,[20][21][22][23][24][29][30][31][32] Each member of the study team participated in practice interviews before engaging in an actual interview with a study participant.…”

“…20,21 The use of advance care planning and advance directives has been proposed as a method to improve endof-life care for homeless persons. 20,22,23 Advance directives may give homeless individuals greater control over their health care decisions and enhance person-centered care for this marginalized population. 21,24 Only one previously published study has attempted to implement advance care planning and advance directive completion in a homeless population.…”