Project Talk Trial: Engaging Underserved Communities in End-of-life Conversations
- Conditions
- Advance Care PlanningAdvance DirectivesTerminal IllnessChronic IllnessCommunication
- Interventions
- Other: Table Topics (general conversation game)Behavioral: Hello (serious game)Behavioral: The Conversation Project (CP) Starter Kit
- Registration Number
- NCT04612738
- Lead Sponsor
- Milton S. Hershey Medical Center
- Brief Summary
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.
- Detailed 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.
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 1500
Not provided
Not provided
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- PARALLEL
- Arm && Interventions
Group Intervention Description Group 3: Control Arm (Placebo control game, 'Table Topics') Table Topics (general conversation game) A placebo/attention control l conversation game called 'Table Topics' will be used. Table Topics is a general conversation starter game that is unrelated to advance care planning. It involves answering open-ended questions in a group setting about a variety of topics. Group 1:Advance care planning conversation game, 'Hello' Hello (serious game) The 'Hello' game is a commercially available serious game that consists of 32 questions prompting players to share their values, goals, and beliefs about end-of-life issues. The game is played with 4 - 5 players, with each receiving a game booklet and chips. A play reads the first question in the book. Then each player writes down their answers individually and takes turns sharing their answers with the group. Players control what they share, how long they share and when to move to the next questions. During the conversation, plays can acknowledge others for a thoughtful, poignant or even funny comments by giving them a chip. A pre-game coin flip determines whether the player with the most chips wins the game (heads) or player with the least chips win (tails) the game. Other names; previously name "My Gift of Grace" Group 2: The Conversation Project (CP) Starter Kit The Conversation Project (CP) Starter Kit The 'CP Starter Kit' (available for free online) is an 11-page workbook with open- ended prompts to consider one's values and preferences for end-of-life care, who to talk with about one's wishes, and suggestions on how to do so.
- Primary Outcome Measures
Name Time Method Rates of Completion of a Visually Verified Advance Directive 6 months post-intervention Study team confirms completion of a signed advance directive
- Secondary Outcome Measures
Name Time Method Advance Care Planning Engagement Survey Baseline (Day 0); 6 months post-intervention This short-version survey measures readiness to perform ACP
Rates of Other Advance Care Planning (ACP) behaviors 6 months post-intervention Performance of other ACP behaviors such as self-reported ACP completion, discussions with loved ones, financial preparations
Trial Locations
- Locations (71)
Hospice & Home Care of Reno
🇺🇸Hutchinson, Kansas, United States
Holy Cross Health
🇺🇸Silver Spring, Maryland, United States
Center for Practical Bioethics
🇺🇸Lawrence, Kansas, United States
Pincham-Lincoln Community Center
🇺🇸Athens, Alabama, United States
Kingman Regional Medical Center
🇺🇸Kingman, Arizona, United States
Accord Health Group
🇺🇸Show Low, Arizona, United States
El Rio Neighborhood Center
🇺🇸Tucson, Arizona, United States
Promotores y Promotoras
🇺🇸Santa Paula, California, United States
Our Lady of Solitude
🇺🇸Soledad, California, United States
Vitas
🇺🇸Walnut Creek, California, United States
University of Colorado Hospital
🇺🇸Aurora, Colorado, United States
HopeWest Montrose
🇺🇸Montrose, Colorado, United States
MedStar Washington Hospital Center
🇺🇸Washington, District of Columbia, United States
High Point Neighborhood Family Center
🇺🇸Clearwater, Florida, United States
St. Phillip AME Church
🇺🇸Tallahassee, Florida, United States
City of Temple Terrace, Omar K. Lightfoot Center
🇺🇸Temple Terrace, Florida, United States
47Million Reasons Healthcare Movement
🇺🇸West Palm Beach, Florida, United States
Phoebe Putney Memorial Hospital
🇺🇸Albany, Georgia, United States
Helene S. Mills
🇺🇸Atlanta, Georgia, United States
Seniors First of GA
🇺🇸Atlanta, Georgia, United States
Gilmer County Senior Center
🇺🇸Ellijay, Georgia, United States
Colquitt Regional Medical Center
🇺🇸Moultrie, Georgia, United States
University of Chicago Medical Ctr
🇺🇸Chicago, Illinois, United States
St. Thomas the Apostle Catholic Church
🇺🇸Crystal Lake, Illinois, United States
Lightways Hospice & Serious Illness Care
🇺🇸Joliet, Illinois, United States
Trinity Lutheran Church
🇺🇸Cherokee, Iowa, United States
Ohio County Senior Centers
🇺🇸Hartford, Kentucky, United States
Bluegrass Care Navigators
🇺🇸Lexington, Kentucky, United States
United Crescent Hill Ministries
🇺🇸Louisville, Kentucky, United States
Union County Senior Services
🇺🇸Morganfield, Kentucky, United States
Hospice of Lake Cumberland
🇺🇸Somerset, Kentucky, United States
Acadian Advocacy Network
🇺🇸Lafayette, Louisiana, United States
St. Mary's Health System
🇺🇸Lewiston, Maine, United States
Good Hope Union UMC
🇺🇸Silver Spring, Maryland, United States
Grove Hall Senior Center
🇺🇸Boston, Massachusetts, United States
Community Economic Development Center
🇺🇸New Bedford, Massachusetts, United States
Christ Temple Church
🇺🇸Muskegon Heights, Michigan, United States
Northeast Mississippi Coalition Against COVID-19
🇺🇸Belden, Mississippi, United States
Elder Law Project of North Mississippi Rural Legal Services
🇺🇸Oxford, Mississippi, United States
Patch Center
🇺🇸Saint Louis, Missouri, United States
Washoe Tribe Health Center
🇺🇸Gardnerville, Nevada, United States
Reformed Church of Freehold
🇺🇸Freehold, New Jersey, United States
Booker T. Washington CES
🇺🇸Las Cruces, New Mexico, United States
Corsi Senior Center
🇺🇸New York, New York, United States
Hospice of St. Lawrence Valley
🇺🇸Potsdam, New York, United States
University of Rochester Medical Center
🇺🇸Rochester, New York, United States
Greater Vision United Methodist Church
🇺🇸Huntersville, North Carolina, United States
Plaza on Princess
🇺🇸Wilmington, North Carolina, United States
Atrium Health Wake Forest Baptist
🇺🇸Winston-Salem, North Carolina, United States
Cleveland Clinic
🇺🇸Akron, Ohio, United States
Hospice of the Western Reserve
🇺🇸Cleveland, Ohio, United States
Hope Behavioral Health
🇺🇸Cleveland, Ohio, United States
Eastside Fellowship Ministries
🇺🇸Columbus, Ohio, United States
Hospice Care of Middletown
🇺🇸Middletown, Ohio, United States
Hospital Council of Northwest Ohio
🇺🇸Toledo, Ohio, United States
Harney County Home Health & Hospice
🇺🇸Burns, Oregon, United States
Stuart Community Center
🇺🇸Carlisle, Pennsylvania, United States
Villa Schiano
🇺🇸Elizabethville, Pennsylvania, United States
Latino Hispanic American Community Center
🇺🇸Harrisburg, Pennsylvania, United States
People's Community Baptist Church
🇺🇸Harrisburg, Pennsylvania, United States
Hospice and Community Care
🇺🇸Lancaster, Pennsylvania, United States
St. Mark Missionary Baptist Church
🇺🇸Bennettsville, South Carolina, United States
Welcome Home of Chattanooga
🇺🇸Chattanooga, Tennessee, United States
Turner Alumni Association
🇺🇸Carthage, Texas, United States
Dorothea Street Community Center
🇺🇸Crane, Texas, United States
Como Community Center
🇺🇸Fort Worth, Texas, United States
Choice Hospice
🇺🇸Sulphur Springs, Texas, United States
Sunshine Terrace Foundation
🇺🇸Logan, Utah, United States
Luray Fire Department
🇺🇸Luray, Virginia, United States
Carmel Baptist Church
🇺🇸Winchester, Virginia, United States
Ocean Beach Hospital
🇺🇸Ilwaco, Washington, United States