End-of-Life Conversation Tools for Advance Care Planning

Recruiting at 24 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

Trial Summary

What is the purpose of this trial?

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.

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 data supports the effectiveness of the treatment Hello (serious game) and related tools for end-of-life conversation and advance care planning?

Research shows that tools like the Go Wish card game can help patients think about and communicate their end-of-life care preferences in a non-stressful way. These tools have been found to be feasible and effective in helping patients and healthcare providers have focused conversations about end-of-life care, even in busy hospital settings. ^{1 2 3 4 5}

Is it safe to use end-of-life conversation tools like card games for advance care planning?

The use of end-of-life conversation tools, such as card games, is generally considered safe. These tools are designed to facilitate discussions about end-of-life care in a non-threatening way and have been used successfully in various settings, including with seriously ill patients, without reported safety concerns. ^{1 2 4 5 6}

How does the Go Wish card game differ from other treatments for end-of-life planning?

The Go Wish card game is unique because it uses a simple, interactive card game format to help patients and their families discuss and prioritize their end-of-life care preferences. Unlike traditional methods that may require lengthy discussions with healthcare professionals, this tool allows individuals to privately consider their values and then have a focused conversation, making it accessible and less intimidating. ^{1 2 4 5 7}

Research Team

Lauren J. Van Scoy, MD

Principal Investigator

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

Eligibility Criteria

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

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

Treatment Details

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.

Participant Groups

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+

Findings from Research

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 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]

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]

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]

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 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]

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]

References

1. United States 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. [2010]

2. United States pubmed.ncbi.nlm.nih.gov

Identifying End-of-Life Preferences Among Chinese Patients With Cancer Using the Heart to Heart Card Game. [2022]

3. Germany pubmed.ncbi.nlm.nih.gov

Advanced cancer patients' reported wishes at the end of life: a randomized controlled trial. [2020]

4. United States pubmed.ncbi.nlm.nih.gov

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

5. United States pubmed.ncbi.nlm.nih.gov

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

6. Switzerland pubmed.ncbi.nlm.nih.gov

Developing a Card Game for Assessment and Intervention in the Person and the Family in Palliative Care: "Pallium Game". [2023]

7. United States pubmed.ncbi.nlm.nih.gov

End-of-life conversations: evolving practice and theory. [2022]