# Engaging underserved communities in end-of-life conversations: a cluster, randomized controlled trial

> **NIH NIH R01** · PENNSYLVANIA STATE UNIV HERSHEY MED CTR · 2020 · $710,835

## Abstract

Many Black/African Americans and Hispanic/Latinx patients are much 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 harnesses 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.
Over the past 5 years, our team has studied an inexpensive and readily scalable serious game called Hello
that prompts discussion of sensitive end-of-life issues. Across multiple studies, participants report that playing
Hello is enjoyable, eye-opening, and motivating —98% of participants subsequently performed at least 1 ACP
behavior. Recently, we developed a nationwide community-based delivery model for ‘Hello’ and confirmed the
game’s acceptability by engaging 53 underserved communities in ACP (n=1,165). We now propose a 3-
armed, cluster, randomized controlled trial (RCT) in diverse, underserved populations to compare the
efficacy of ‘Hello’ (Group 1) with a nationally promoted structured workbook ‘The Conversation Project Starter
Kit,’ (Group 2), and a non-ACP game called ‘Table Topics,’ (placebo/attention control; Group 3). We will
randomize 75 underserved communities across the US (20 participants/site; n=1,500). The primary outcome
is completion of a visually verified AD; secondary outcomes include performance of other ACP behaviors.
This study will provide key scientific advancements by: 1) providing efficacy data on two widely used and easily
scalable but not yet evidence-based interventions; 2) advancing the science of interventional design by
examining the interventions’ potential mechanisms of action (i.e. quality of communication, and role of socio-
cultural environment); and 3) assessing how and why our community-based delivery model engages
underserved communities in ACP. Should the RCT have negative findings, we still will have gained a robust
understanding of the sociocultural environment’s role in population health research. If successful, this project
will provide an evidence-based model for engaging underserved communities in ACP, along with a robust
underst...

## Key facts

- **NIH application ID:** 9972425
- **Project number:** 1R01MD014141-01A1
- **Recipient organization:** PENNSYLVANIA STATE UNIV HERSHEY MED CTR
- **Principal Investigator:** Lauren Jodi Van Scoy
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $710,835
- **Award type:** 1
- **Project period:** 2020-09-17 → 2025-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9972425

## Citation

> US National Institutes of Health, RePORTER application 9972425, Engaging underserved communities in end-of-life conversations: a cluster, randomized controlled trial (1R01MD014141-01A1). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/9972425. Licensed CC0.

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