Overview
Compared to the general population, individuals from underserved communities are more likely to receive low quality end-of-life care and unwanted, costly and burdensome treatments due in part to a lack of advance care planning (ACP; the process of discussing wishes for end-of-life care with loved ones/clinicians and documenting them in advance directives).
This study will use existing, trusted, and respected social networks to evaluate two conversation-based tools intended to engage underserved individuals in discussions about end-of-life issue and motivate them to carry out ACP behaviors.
Through this study, investigators will learn how best to engage underserved populations in ACP so as to: 1) increase the likelihood that patients from underserved communities will receive high-quality end-of-life care; 2) address health disparities related to end-of-life treatments; and 3) reduce unnecessary suffering for patients and their families.
Description
The overall project goal of this 3-armed cluster, randomized control trial in underserved, diverse communities is to determine whether playing a serious conversation game called Hello is more effective than other advance care planning (ACP) approaches, or usual care (i.e., simply distributing an advance directive [AD]). The investigators will randomize 75 underserved communities across the US. The primary outcome is completion of a visually verified AD; secondary outcomes include performance of other ACP behaviors.
Many Black/African Americans and Latina/Latino patients are more likely to receive low quality end-of- life medical care than White individuals- in fact, they are 3 times more likely than white Americans to die after a lengthy intensive care unit stay. Advance care planning (ACP)- the process of discussing one's wishes with loved ones and clinicians, and then documenting them in an advance directive (AD)- can help reduce these health inequities by preventing costly/burdensome treatments that are unlikely to reduce suffering or improve quality of life. Though ~60% of Americans engage in ACP, <25% of underserved populations have done so- in large part due to distrust of the healthcare system/clinicians, and reluctance to discuss death and dying.
This study leverages underserved communities' existing, trusted social networks to deploy two community-based ACP interventions and study their mechanisms of action. By identifying which interventions increase engagement in ACP in underserved communities (and why), this project will help improve quality of end-of-life care, reduce unnecessary suffering, and end-of-life healthcare costs which conserves public health resources.
Eligibility
Inclusion Criteria Community Hosts
- Ability to recruit 20 individuals from underserved populations to attend a community event
- Experience hosting a community event
- Experience working with underserved populations
- Participation in a series of mandatory live study-related web-based trainings
- Completes a research site agreement
Research Participants
- Adults over the age of 18 years old in underserved populations
- Able to speak and read English and/or Spanish
- Have not completed an AD within the previous 5 years
- All participants regardless of health status
- Individuals from the same household can enroll
Exclusion Criteria Community Hosts
- Inability to recruit 20 individuals from underserved populations
- Inexperience for hosting a community event
- Inexperience working with underserved populations
- Unable to attend a series of mandatory live study-related web-based trainings
- Do not provide informed consent
- Do not complete a research site agreement
- Previously hosted a Hello project event
Research Participants
- Anyone <18 years of age
- Anyone not able to speak and read English and/or Spanish
- Have significant difficulties with hearing or speaking difficulties by self-report
- Completed an AD in the past 5 years
- Do not provide informed consent