Healthy Clinical Trial
Official title:
Intervention to Improve Expression of End of Life Preferences for Homeless Persons
The purpose of this study is to determine whether homeless individuals will complete a living will and whether guidance enhances rates of completion and to see whether filling out a living will has any impact on the care given at the end of life.
Much research and effort have been directed towards improving end-of-life (EOL) care in the
US. However, there is consensus that large gaps in knowledge remain regarding quality EOL
care, most notably because previous research has focused on narrowly defined populations.
There is little known about individuals who are from different ethnic, cultural, and
socioeconomic backgrounds. There is some evidence that these individuals may desire and
experience EOL care differently and may encounter barriers to obtaining this care. What is
not known is what interventions are effective in these populations. This study addresses EOL
care for homeless people, the most extreme examples of these overlooked populations. They
have the greatest risk of death in the US, have unique perspectives of good EOL care,
encounter significant barriers to care, and lack the resources and relationships assumed
necessary for good EOL care. Despite this, there are no interventional studies determining
whether EOL care can be improved in this population. Encouraging individuals to document
preferences for EOL care through Advance Directives (ADs), has been central to efforts to
improve EOL care. ADs, however, have been subject to conceptual and empirical criticism,
particularly that they may not ultimately affect EOL care received. However, these
shortcomings have been mainly demonstrated in specific and similar populations, and has not
been addressed in underserved populations. There are reasons to believe that ADs and advance
care planning have different utility and efficacy for homeless persons and are much desired
in this population. This proposal builds upon four years of research, including an
NIH/NINR-funded investigation, regarding EOL care, dying, and death. This research is some
of the first work defining the concerns of homeless persons regarding EOL care and confirmed
the relevance and potential of ADs in this population to impact EOL care positively. We seek
to test an intervention to improve EOL care for homeless persons: 300 participants will be
randomized into two arms, guided intervention (GI) and minimal intervention (MI). The GI
condition will expose participants to education, guidance and counseling, and an AD tool,
designated HELP (Appendix A), specifically designed for underserved and estranged
populations to enhance autonomy and elicit preferences of EOL care. The MI condition will
expose participants to the provision of HELP and instructions, mimicking community standards
and the requirements of the federal PSDA.
Primary Aim 1: To determine whether homeless individuals will complete an AD and whether
guidance enhances rates of completion. Hypothesis 1: We hypothesize that the MI will result
in greater completion rate in this population than most others studied, and that the GI will
result in a significantly greater rate than the MI - we anticipate a 20% completion rate in
the MI condition and a 50% rate in the GI condition. Primary Aim 2: To determine whether
completion of ADs by homeless individuals lead to their use during county hospital care
encounters over 18 months after the intervention. Hypothesis 2: We hypothesize that when
completed ADs exist, they will be used or documented as part of clinical care at least 70%
of the time during county health care encounters.
It is important to test appropriate, reproducible interventions in underserved populations,
and insights from this project will be significant in several ways: they will help address
the EOL concerns of homeless persons, and provide the basis to address the needs of others
who are disenfranchised from loved ones and/or receive fragmented, episodic care, such as
the rural and urban poor, homebound persons, or undocumented persons.
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Allocation: Randomized, Intervention Model: Parallel Assignment, Masking: Open Label, Primary Purpose: Health Services Research
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