End-of-Life Conversation Tools for Advance Care Planning

Recruiting at 19 trial locations

Overseen By Elizabeth Keene

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Milton S. Hershey Medical Center

Disqualifiers: Under 18, Hearing or speaking difficulties, others

Compensation: Varies

Number of Visits: 3

1500 Participants Needed

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial explores ways to help people from underserved communities discuss and plan for end-of-life care. It tests two conversation tools: a game called "Hello," which encourages sharing personal values and beliefs, and the "Conversation Project Starter Kit," a workbook guiding discussions about end-of-life wishes. The goal is to improve the quality of care these communities receive and reduce unnecessary suffering. Suitable candidates for this trial are adults from underserved communities who haven't completed an advance directive (a document outlining end-of-life wishes) in the last five years and can speak and read English or Spanish. As an unphased trial, this study offers a unique opportunity to contribute to meaningful improvements in end-of-life care for underserved communities.

Do I have to stop taking my current medications for this trial?

The trial information does not specify whether you need to stop taking your current medications. It seems focused on conversations about end-of-life care rather than medical treatments.

What prior data suggests that these conversation tools are safe for advance care planning?

Research has shown that both the Hello game and The Conversation Project Starter Kit are safe and easy-to-use tools for discussing end-of-life preferences. The Hello game, a conversation game, helps people talk about what matters most to them. It has been used in community settings and is considered friendly and easy to participate in, with no negative effects reported in various studies.

The Conversation Project Starter Kit, an 11-page workbook, encourages discussions about end-of-life care. It is widely available and helps many express their care wishes. Like the Hello game, it is a conversation tool with no reported safety issues.

Both tools are designed to facilitate meaningful discussions without any known risks. Participants can comfortably use these resources to explore and document their end-of-life care preferences. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about these tools for end-of-life conversations because they offer new ways to approach advance care planning. The "Hello" game uses an interactive and social format that encourages players to discuss their values and beliefs in a group setting, making these tough conversations more engaging and less intimidating. The Conversation Project (CP) Starter Kit provides a structured yet flexible workbook to reflect on personal preferences and facilitate discussions with loved ones. Both tools aim to make planning for end-of-life care more accessible and personalized, potentially leading to better alignment between a person's wishes and the care they receive.

What evidence suggests that these conversation tools are effective for advance care planning?

In this trial, participants will use various tools to facilitate end-of-life care conversations. Research has shown that the "Hello" game, used by participants in one arm of this trial, can help people discuss end-of-life care. Studies have found it effective in encouraging players to discuss and document their wishes for end-of-life care, particularly in resource-limited communities. Another group in this trial will use the Conversation Project (CP) Starter Kit, which has been shown to help people share their preferences for end-of-life care. Evidence from advance care planning activities suggests that using the CP Starter Kit helps people communicate their wishes, increasing the likelihood that these wishes will be honored. Both tools aim to improve the quality of end-of-life care by encouraging important conversations. ^{1 2 3 4 5}

Who Is on the Research Team?

Lauren J. Van Scoy, MD

Principal Investigator

Penn State Milton S. Hershey Medical Center; Penn State University College of Medicine

Are You a Good Fit for This Trial?

This trial is for adults over 18 from underserved communities who can speak and read English or Spanish. They should not have completed an advance directive in the past 5 years. Community hosts must be able to gather 20 individuals, have experience with events and working with these populations, plus complete mandatory training.

Inclusion Criteria

Research Participants

Participation in a series of mandatory live study-related web-based trainings

Completes a research site agreement

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention

Participants engage in advance care planning interventions using either the 'Hello' game, 'CP Starter Kit', or 'Table Topics' as a control.

Immediate post-intervention

1 visit (in-person or virtual)

Follow-up

Participants are monitored for completion of advance directives and other ACP behaviors.

6 months

Telephone interviews at 2 weeks and 6 months post-intervention

Qualitative Follow-up

Qualitative interviews to explore experiences and perceptions of the intervention.

2 weeks post-intervention

What Are the Treatments Tested in This Trial?

Interventions

• Hello (serious game)
• Table Topics (general conversation game)
• The Conversation Project (CP) Starter Kit

Trial Overview The study tests two tools: 'Hello', a serious game, and The Conversation Project Starter Kit against a general conversation game to engage people in end-of-life discussions and motivate them to plan their care preferences ahead of time.

How Is the Trial Designed?

Group I: Group 1:Advance care planning conversation game, 'Hello' Active Control 1 Intervention

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 II: Group 2: The Conversation Project (CP) Starter Kit Active Control 1 Intervention

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.

Group III: Group 3: Control Arm (Placebo control game, 'Table Topics') Placebo Group 1 Intervention

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.

Who Is Running the Clinical Trial?

Milton S. Hershey Medical Center

Lead Sponsor

Trials

515

Recruited

2,873,000+

Hospice Foundation of America

Collaborator

Trials

2

Recruited

2,600+

University of Kentucky

Collaborator

Trials

198

Recruited

224,000+

Published Research Related to This Trial

The Heart to Heart Card Game (HHCG) effectively facilitates end-of-life (EOL) discussions among Chinese cancer patients, with over 70% of participants valuing the tool highly.

Patients prioritized social and spiritual needs over physical and financial concerns, highlighting the importance of family relationships and dignity in their EOL preferences.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Identifying End-of-Life Preferences Among Chinese Patients With Cancer Using the Heart to Heart Card Game. Li, T., Pei, X., Chen, X., et al.[2022]

The Conversation Project aims to educate individuals about their end-of-life care options and encourage discussions about personal wishes regarding this sensitive topic.

The article provides practical tips for initiating conversations about end-of-life care, drawing from the author's personal experiences in caring for four aging parents and understanding their desires.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The Conversation Project: A Reminder for Critical Care Nurses. Miracle, VA.[2018]

End-of-life conversations are crucial for improving the quality of life for terminally ill patients, but various barriers exist that hinder these discussions among patients, families, and healthcare professionals.

To enhance these conversations, strategies should focus on improving physicians' communication skills, adopting a patient-centered care model, prioritizing quality of life, and implementing innovative clinical approaches earlier in the care process.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

End-of-life conversations: evolving practice and theory. Larson, DG., Tobin, DR.[2022]

The Go Wish card game is an effective and accessible tool for facilitating conversations about end-of-life care, particularly for low-functioning assisted-living residents and their families, requiring minimal instruction for use.

This tool not only helps articulate patients' needs and concerns but has also proven to be widely applicable across various settings, making it a cost-effective option for advance care planning.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Go Wish: a tool for end-of-life care conversations. Menkin, ES.[2007]

The Go Wish card game is a feasible tool for helping seriously ill patients in hospitals articulate their end-of-life care preferences, with 25% of approached patients successfully completing the game.

The most important value identified by patients was 'to be free from pain,' highlighting key concerns such as spirituality and symptom management, and the process took an average of 21.8 minutes, making it a time-efficient method for goal-setting discussions.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Feasibility of discussing end-of-life care goals with inpatients using a structured, conversational approach: the go wish card game. Lankarani-Fard, A., Knapp, H., Lorenz, KA., et al.[2010]

The development of the 'Pallium game' involved multiple phases, including exploratory, Delphi, and case studies, demonstrating a structured approach to creating a tool for palliative care communication.

The game was found to be effective in facilitating discussions about sensitive topics, helping patients and families express their feelings and needs, thus enhancing the therapeutic relationship and overall care experience.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Developing a Card Game for Assessment and Intervention in the Person and the Family in Palliative Care: "Pallium Game". Fernandes, CS., Vale, MB., Magalhães, B., et al.[2023]

Patients with advanced cancer expressed high importance on spiritual wishes and family presence, with consistent preferences noted across two assessments using the Go Wish card game (GWG).

The GWG was found to be user-friendly and did not increase anxiety levels among patients, with 62% of participants preferring the GWG for discussing end-of-life wishes.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Advanced cancer patients' reported wishes at the end of life: a randomized controlled trial. Delgado-Guay, MO., Rodriguez-Nunez, A., De la Cruz, V., et al.[2020]

Citations

1. hospicefoundation.org hospicefoundation.org/projects/hello-project/

"Hello" Project A 16-month research grant project on the importance of talking about end-of-life wishes and documenting those wishes using the conversation game, Hello.

2. sciencedirect.com sciencedirect.com/science/article/pii/S0885392417302981

Community Game Day: Using an End-of-Life Conversation ... This convergent, mixed-methods study assessed whether an end-of-life conversation card game is an acceptable and effective means for performing ACP for ...

3. jamanetwork.com jamanetwork.com/journals/jamanetworkopen/fullarticle/2765685

End-of-Life Conversation Game, Advance Care Planning ... The end-of-life conversation game may be a useful tool for engaging underserved African American communities in advance care planning.

4. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC7210487/

Association of Participation in an End-of-Life Conversation ... The end-of-life conversation game may be a useful tool for engaging underserved African American communities in advance care planning.

5. commonpractice.com commonpractice.com/products/hello-game

Hello Game (Home Edition) - Common Practice Hello is a conversation game. It's the easy, non-threatening way to start a conversation with your family and friends about what matters most to you.