November 2017 Article of the Month
This month's article selection is highlighted by John Ehman,
University of Pennsylvania Medical Center-Penn Presbyterian, Philadelphia PA.
Van Scoy, L. J., Watson-Martin, E., Bohr, T. A., Levi, B. H. and Green, M. J. "End-of-life conversation game increases confidence for having end-of-life conversations for chaplains-in-training." American Journal of Hospice & Palliative Medicine (2017): published by the journal online, August 7, 2017, ahead of print.
[Editor's Note: Because this article is available ahead of print, no final page numbers can be cited. Quotations noted below are referenced by manuscript [MS] page numbers.]
SUMMARY and COMMENT: This "mixed methods study is the first to explore and demonstrate the efficacy of using an end-of-life conversation game as an educational tool for chaplains who provide in-hospital services to patients regarding end-of-life discussions" [MS p. 6]. The research was carried out with the CPE program at the Penn State Hershey Medical Center and was supported by a grant from the ACPE Foundation [--see Items of Related Interest, §I, below]. ACPE Certified Educator Elizabeth Watson-Martin is a co-author and offers some personal thoughts on the project, below. In a notice from ACPE Executive Director Trace Haythorn, "The findings…might help to tailor the CPE curriculum with other interactive strategies for helping chaplains and spiritual care practitioners address this topic" [Monday Briefing, 11/6/17].
This research builds upon previous work by Lauren Jodi Van Scoy, MD, and colleagues [--see Items of Related Interest, §III, below], examining the use of the "My Gift of Grace" game (recently renamed "Hello"), which "consists of 47 question cards that prompt players (in groups of 4-6) to discuss issues related to quality of life, end-of-life planning, values and preferences about medical care, spirituality, and related topics" [MS p. 2].
Despite growing evidence of My Gift of Grace's efficacy and broad acceptance, this has not yet been studied for use in educational settings such as clinical pastoral educational programs. The study described here was designed to determine whether an end-of-life conversation game can increase chaplain-in-trainings' confidence discussing end-of-life issues with patients. [MS p. 2]
A representative sample of questions from the game cards:
- If your doctors believed you had 6 months to live, who would you want them to tell?
- When was the last time you needed help from someone else? What made accepting help easier for you? What made it more difficult?
- If you had 3 months to live, what would you give yourself permission to do? Choose one thing per month.
- What music do you want to be listening to on your last day alive?
- In order to provide you with the best care possible, what 3 nonmedical facts should your doctor know about you?
- Imagine you were lost at sea and your family had to pay for the search to find you. Who should make the decision about how long to search for you?
- What do you fear more: experiencing the worst pain of your life or not getting a chance to say goodbye to your family?
Twenty-three CPE students at the Penn State Hershey Medical Center, Hershey, PA, participated as part of their program curriculum and completed measures pertaining to prior experience with end-of-life conversations, negative affect, and confidence. They provided additional information immediately after playing curated versions of the game twice and in light of having had a relevant patient conversation between the games. A qualitative component followed 2-3 weeks later with one-on-one, semi-structured interviews with the students. Tables offer detailed information on game card questions [MS p. 3], demographics [MS p. 5], and findings [MS pp. 5-7].
Among the results:
ACPE educators should also be especially interested in findings from the interviews, illustrated with students' quotes [Table 5, MS p. 6]. Participants' expressed themes are summarized regarding how the game was "empowering and confidence-building," how it "provided useful suggestions for conversations starters," and "reinforced relationships with peers." [MS p. 6] Moreover, "playing the game twice was beneficial and not redundant" [MS p. 5]: it "reinforced and deepened positive group dynamics" and "allowed deeper reflection, reinforcement, and exploration of the issues." [MS p. 6]
- "...[T]he conversation game resulted in increased confidence and decreased anxiety about having end-of-life conversations with patients." [MS p. 6]
- There were "desirable changes in emotion from the conversation game (ie, reduced fear, reduced shyness, increased self-assurance, increased positive affect, and reduced negative affect), especially in game 1." These changes, quantitatively measured, were "modest but significant." [MS p. 6]
- "...[I]n both their quantitative and qualitative assessments, trainees found the conversation game to be a useful educational tool. Postgame conversation satisfaction and realism scores were high for both conversation games....[And] 95% of trainees said they would recommend the conversation game to others." [MS p. 6]
The authors note limitations for such a small study [--see MS p. 6]. This reader would also make two observations: First, this is not a study of the "My Gift of Grace" game out-of-the-box, but rather a test of a curated application of the game by careful selection of the game's cards. That selective use of the game does indeed seem to have been successful, but educators might best be encouraged to consider the value of specific card/question selections conveniently noted in Table 1 [MS p. 3]. Second, while the one-on-one interviews conducted 2-3 weeks after the game did give students "opportunities" to reflect on their experience, the study does not appear to have controlled for how the students may have been moved in the interim to process the experience with peers or a supervisor. How much did the experience generate a drive for reflection beyond the formal interviews, and might such additional reflection have shaped students' sense of the game over and above their own private experience? Such questions could of course be foci for further research, but they might be kept in mind practically by educators running CPE groups.
The authors describe end-of-life situations as "high stakes," "where communication is especially critical" [MS p. 1]. Their study suggests that "My Gift of Grace" provides a useful structure to help CPE students venture into critical conversations and that it has promise for application to CPE curricula. It clearly also has promise for further research involving chaplains.
[Editor's note: The author of this Article-of-the-Month feature was consulted by the creators of "My Gift of Grace" during the game's development and arranged a group feedback session as part of that development but received no remuneration for this involvement and has had no financial or other stake in the game or in Common Practice. Coverage of the article by the ACPE Research Network speaks solely to its research significance and does not constitute an endorsement of any product. --JE]
Special Comment to the Network by Rev. Elizabeth Watson-Martin, MDiv, BCC, ACPE-Certified Educator, Director of Pastoral Services & Education, Penn State Health -- Milton S. Hershey Medical Center, Hershey, PA:
I learned about the My Gift of Grace card game (now called Hello) from a Penn State Health physician colleague who shared pastoral services' commitment to facilitation of advance-care planning conversations between patients, their loved ones, and their healthcare providers. I joined the institution's effort to utilize the game in our community to educate and prepare for end-of-life medical decision making. It was during this time that I saw the game's potential as an added CPE curriculum component. In addition to readings and didactic presentations about advance care planning, the game provided a personal, non-intimidating way to enter into the arena. The study showed that game play significantly allayed beginning chaplains' anxiety about engaging these important spiritual/existential conversations. I enjoyed supplementing our CPE advance-care planning curriculum with this research project, generously funded by the ACPE Foundation's "Innovative CPE Programs" grant. I was blessed to collaborate with the above-mentioned physician, Dr. Lauren Jodi Van Scoy, and am grateful for the ACPE's funding which allowed for us to secure a data collection/interpretive analyst.
Suggestions for Use of the Article for Student Discussion:
Using this month's article poses a strategic problem CPE programs that might incorporate the "My Gift of Grace" game, as reading it ahead of time could complicate student experience of play. For such programs, a delay in assigning the article until after the game (perhaps for weeks or months) would seem prudent and might create an opening for the group to revisit what they had learned. For programs not incorporating the game, this study could spur good discussion in a stand-alone session by raising questions of how comfortable students feel about end-of-life care conversations and whether they simply have much practice with them. Having the group respond to a few select questions from Table 1 [MS p. 3] could be a most engaging exercise in and of itself. Also, what does the group make of the finding that the study's participants felt the game "reinforced and deepened positive group dynamics" [MS p. 6]? Finally, students might discuss whether they think the question-based format of the game risks confounding their pastoral practice of following the lead of a patient by encouraging them to use questions as "conversation starters or prompts" [MS p. 5] (since questions per se tend to be a strong form of leading). If so, how might they utilize poignant questions about death and dying for their own educational benefit while checking against the risk of merely importing such questions into pastoral visitation?
Related Items of Interest:
I. A brief YouTube video, ACPE Foundation: My Gift of Grace, features Elizabeth Watson-Martin and students at the Hershey Medical Center who participated in the study. Also, the ACPE's Your Gifts at Work web page notes:
In 2016, your gifts helped CPE students become more comfortable in advance-care planning conversations with patients and their families. Led by Elizabeth Watson-Martin at Penn State Hershey Medical Center, students participated in a research project to study how the My Gift of Grace game might allay anxiety of new spiritual caregivers when the opportunity presents itself to engage in advance care-planning conversations with patients and families. The findings of this research will be published in various outlets, and might help to tailor the CPE curriculum with other interactive strategies for helping chaplains and spiritual care practitioners address this topic.
II. The "My Gift of Grace" game, now called "Hello," is produced by Common Practice (https://commonpractice.com). Their site sections on Research and White Papers may be of special interest to chaplains. The currently available version of the game differs from the original in that individual question cards have been replaced with question booklets. Regarding the original "My Gift of Grace," see the guide, "From Conversation to Action," which names seven major themes in the game's questions:
- Naming Your Healthcare Proxy
- Guiding Your Healthcare Proxy
- Filling Out Your Advance Directive
- Prompting Goals of Care conversations
- Getting to Know a Caregiver
- Planning a Memorial Service
- Developing a New Tradition
III. Previous research using the "My Gift of Grace" game:
Radhakrishnan, K., Van Scoy, L. J., Jillapalli, R., Saxena, S. and Kim, M. T. "Community-based game intervention to improve South Asian Indian Americans' engagement with advanced care planning." Ethnicity & Health (2017), published online by the journal, July 27, 2017, ahead of print. [(Abstract:) OBJECTIVE: Advance care planning (ACP) allows individuals to express their preferences for medical treatment in the event that they become incapable of making their own decisions. This study assessed the efficacy of a conversation game intervention for increasing South Asian Indian Americans' (SAIAs') engagement in ACP behaviors as well as the game's acceptability and cultural appropriateness among SAIAs. DESIGN: Eligible community-dwelling SAIAs were recruited at SAIA cultural events held in central Texas during the summer of 2016. Pregame questionnaires included demographics and the 55-item ACP Engagement Survey. Played in groups of 3-5, the game consists of 17 open-ended questions that prompt discussions of end-of-life issues. After each game session, focus groups and questionnaires were used to examine the game's cultural appropriateness and self-rated conversation quality. Postintervention responses on the ACP Engagement Survey and rates of participation in ACP behaviors were collected after 3 months through phone interviews or online surveys. Data were analyzed using descriptive statistics, frequencies, and paired t-tests comparing pre/post averages at a .05 significance level. RESULTS: Of the 47 participants, 64% were female, 62% had graduate degrees, 92% had lived in the U.S. for >10 years, 87% were first-generation immigrants, and 74% had no advance directive prior to the game. At the 3-month follow-up, 58% of participants had completed at least one ACP behavior, 42% had discussed end-of-life issues with loved ones, 15% did so with their healthcare providers, and 18% had created an advanced directive. ACP Engagement Survey scores increased significantly on all four of the process subscales by 3 months postgame. CONCLUSION: SAIA individuals who played a conversation game had a relatively high rate of performing ACP behaviors 3 months after the intervention. These findings suggest that conversation games may be useful tools for motivating people from minority communities to engage in ACP behaviors.]
Van Scoy, L. J., Green, M. J., Reading, J. M., Scott, A. M., Chuang, C. H. and Levi, B. H. "Can playing an end-of-life conversation game motivate people to engage in advance care planning?" American Journal of Hospice & Palliative Medicine 34, no. 8 (September 2017): 754-761. [(Abstract:) Background: Advance care planning (ACP) involves several behaviors that individuals undertake to prepare for future medical care should they lose decision-making capacity. The goal of this study was to assess whether playing a conversation game could motivate participants to engage in ACP. Methods: Sixty-eight English-speaking, adult volunteers (n = 17 games) from communities around Hershey, Pennsylvania, and Lexington, Kentucky, played a conversation card game about end-of-life issues. Readiness to engage in 4 ACP behaviors was measured by a validated questionnaire (based on the transtheoretical model) immediately before and 3 months postgame and a semistructured phone interview. These behaviors were (1) completing a living will; (2) completing a health-care proxy; (3) discussing end-of-life wishes with loved ones; and (4) discussing quality versus quantity of life with loved ones. Results: Participants' (n = 68) mean age was 51.3 years (standard deviation = 0.7, range: 22-88); 94% of the participants were caucasian and 67% were female. Seventy-eight percent of the participants engaged in ACP behaviors within 3 months of playing the game (eg, updating documents, discussing end-of-life issues). Furthermore, 73% of the participants progressed in stage of change (ie, readiness) to perform at least 1 of the 4 behaviors. Scores on measures of decisional balance and processes of change increased significantly by 3 months postintervention. Conclusion: This pilot study found that individuals who played a conversation game had high rates of performing ACP behaviors within 3 months. These findings suggest that using a game format may be a useful way to motivate people to perform important ACP behaviors.]
Van Scoy, L. J., Reading, J. M., Hopkins, M., Smith, B., Dillon, J., Green, M. J. and Levi, B. H. "Community game day: using an end-of-life conversation game to encourage advance care planning." Journal of Pain & Symptom Management (2017), published online by the journal, July 23, 2017, ahead of print. [(Abstract:) CONTEXT: Advance care planning (ACP) is an important process that involves discussing and documenting one's values and preferences for medical care, particularly end-of-life treatments. OBJECTIVES: This convergent, mixed-methods study assessed whether an end-of-life conversation card game is an acceptable and effective means for performing ACP for patients with chronic illness and/or their caregivers when deployed in a community setting. METHODS: Twenty-two games (n = 93 participants) were held in community settings surrounding Hershey, PA in 2016. Participants were recruited using random sampling from patient databases and also convenience sampling (i.e., flyers). Quantitative questionnaires and qualitative focus group interviews were administered to assess the game experience and subsequent performance of ACP behaviors. RESULTS: Both quantitative and qualitative data found that Community Game Day was a well-received, positive experience for participants and 75% of participants performed ACP within three months post-intervention. CONCLUSIONS: These findings suggest that using a conversation game during community outreach is a useful approach for engaging patients and caregivers in ACP. The convergence of quantitative and qualitative data strongly supports the continued investigation of the game in randomized controlled trials.]
Van Scoy, L. J., Reading, J. M., Scott, A. M., Chuang, C., Levi, B. H. and Green, M J. "Exploring the topics discussed during a conversation card game about death and dying: a content analysis." Journal of Pain & Symptom Management 52, no. 5 (November 2016): 655-662. [(Abstract:) CONTEXT: Substantive discussions between loved ones are necessary for effective advance care planning. Although multiple tools are currently in use for promoting conversations, the content and clinical relevance of the conversations they stimulate is unknown. OBJECTIVE: To describe the content and clinical relevance of conversations that occur during a nonfacilitated end-of-life conversation game. METHODS: Using convenience sampling, we scheduled adult volunteers to participate in an end-of-life conversation game (2-6 individuals per game; n = 68). Participants discussed 20 questions about death, dying, or end-of-life issues. Games lasted up to two hours and were audio-recorded, transcribed, and analyzed using a conventional qualitative content analysis approach to identify emerging themes. RESULTS: Participants (n = 68) were primarily Caucasian (94%), females (68%), with mean age of 51.3 years (SD 0.7). Seventeen games were analyzed. Four primary themes emerged during game conversations: 1) the importance of people, relationships, and the roles played during end-of-life decision making, 2) values, beliefs, and preferences related to end-of-life care and the dying period, 3) considerations about preparing for the aftermath of one's death, and 4) the relevance of stories or experiences for informing one's own end-of-life preferences. CONCLUSIONS: Topics discussed during a nonfacilitated end-of-life conversation game are substantive and address important issues for advance care planning.]
Van Scoy, L. J., Reading, J. M., Scott, A. M., Green, M. J. and Levi, B. H. "Conversation game effectively engages groups of individuals in discussions about death and dying." Journal of Palliative Medicine 19, no. 6 (June 2016): 661-667. [(Abstract:) BACKGROUND: Discussions about end-of-life (EOL) values, wishes, and beliefs are critical for effective advance care planning (ACP). New strategies are needed to engage individuals in EOL conversations. OBJECTIVE: The study objective was to test the feasibility of using a conversation game to engage individuals in EOL discussions. METHODS: This study used a mixed-methods approach. Participants played a conversation game that prompts players to answer and discuss 20 questions about death, dying, and EOL care. Participants completed pre- and postgame questionnaires and participated in postgame focus groups. Subjects were 70 healthy volunteers (18 groups of families, friends, or strangers). Demographics, emotional state, and perceived relational closeness were measured using preintervention questionnaires. Postintervention questionnaires measured conversation satisfaction, realism, self-rated quality, and emotional state. Postgame focus groups evaluated players' experiences playing the game. RESULTS: Using a seven-point Likert scale (1=low score, 7=high score), players rated game conversations as satisfying (mean [M]=6.1, SD=0.9), realistic (M=5.6, SD=0.8), and of high quality (M=5.7, SD=0.9). There were no negative effects on emotional state immediately postgame (M=1.3, SD=0.5). A thematic analysis of participants' experiences (n=55) revealed that (1) playing the game was an enjoyable, positive experience; (2) a game is a good framing for EOL discussions; and (3) there were mixed opinions about ideal game group composition. CONCLUSIONS: This study established that healthy volunteers enjoyed engaging in a two-hour discussion about EOL issues when framed as a game. The game experience was a positive, satisfying, and enjoyable activity for participants. Further studies are needed to determine if health games can promote effective ACP.]
Van Scoy, L. J., Scott, A. M., Reading, J. M., Chuang, C. H., Chinchilli, V. M., Levi, B. H. and Green, M. J. "From theory to practice: measuring end-of-life communication quality using multiple goals theory." Patient Education & Counseling 100, no. 5 (May 2017): 909-918. [(Abstract:) OBJECTIVES: To describe how multiple goals theory can be used as a reliable and valid measure (i.e., coding scheme) of the quality of conversations about end-of-life issues. METHODS: We analyzed conversations from 17 conversations in which 68 participants (mean age=51years) played a game that prompted discussion in response to open-ended questions about end-of-life issues. Conversations (mean duration=91min) were audio-recorded and transcribed. Communication quality was assessed by three coders who assigned numeric scores rating how well individuals accomplished task, relational, and identity goals in the conversation. RESULTS: The coding measure, which results in a quantifiable outcome, yielded strong reliability (intra-class correlation range=0.73-0.89 and Cronbach's alpha range=0.69-0.89 for each of the coded domains) and validity (using multilevel nonlinear modeling, we detected significant variability in scores between games for each of the coded domains, all p-values <0.02). CONCLUSIONS: Our coding scheme provides a theory-based measure of end-of-life conversation quality that is superior to other methods of measuring communication quality. PRACTICE IMPLICATIONS: Our description of the coding method enables researches to adapt and apply this measure to communication interventions in other clinical contexts.]
IV. While this month's article explores how to prepare chaplains for end-of-life care conversations, it proceeds from the authors' research into how the game in question is successful in inviting people into difficult conversations. To that point of practically inviting patients into dialogue, some of our past Articles-of-the-Month suggest various strategies. See especially our December 2014 article about the use of images from paintings to stimulate patient reflection. The particular study by Florence Gelo, et al., was not aimed at end-of-life situations, but Dr. Gelo mentions in her comments to the Network the possible application for patients facing the end of their lives. Also, our June 2017 feature, regarding the creation of Spiritual Legacy Documents for patients with brain cancer, shows the value of such a means of engaging patients. The very idea of a Spiritual Legacy Document is congruent with some of the individual questions in the "My Gift of Grace" game.
Note that our March 2017 article, profiling the work of palliative care chaplains in the US, found that chaplains often serve to address patient's goals of care and facilitate communication between patients, family, and the healthcare team -- activities that put chaplains at the heart of conversations about wishes for end-of-life care -- though there were differences in incidence between those who work solely in palliative care and those who occasionally are called into palliative situations.
Chaplains who always serve PC [i.e., Palliative Care] are far more likely to address goals of care (70%) than chaplains who occasionally serve PC (43%). They are also twice as likely to facilitate communication between patients, family, and the healthcare team (65%) than occasionally involved counterparts (34%). [See p. 507 of Jeuland, J., et al., "Chaplains working in palliative care: who they are and what they do," Journal of Palliative Medicine 20, no. 5 (May 2017): 502-508.]
V. A few recent articles of possible interest, pertaining to end-of-life care discussions:
Grewe, F. "The Soul's Legacy: a program designed to help prepare senior adults cope with end-of-life existential distress." Journal of Health Care Chaplaincy 23, no. 1 (January-March 2017): 1-14. [(Abstract:) Current innovative psychological therapies have made great progress in addressing existential suffering in dying patients but are often begun too late in the end-of-life process and often ignore religion, which for many is a major component in the meaning-making process. Therefore, this article explores how chaplains (who are familiar with various religious traditions without promoting them) can help prepare senior adults effectively cope with inevitable end-of-life existential issues. The project described in this article provides tools for chaplains to address the real issues that terrify us all, but particularly the elderly: death, isolation, and meaninglessness. It is proposed that the addition of a spiritual will or legacy of the soul added to end-of-life planning can help ameliorate existential suffering at life's end.]
Lambert South, A. and Elton, J. "Contradictions and promise for end-of-life communication among family and friends: death over dinner conversations." Behavioral sciences 7 (2017): 24 [electronic journal article designation]. [(Abstract:) The free, open-access website called "Let's Get Together and Talk about Death," or Death over Dinner (DoD), provides resources for initiating end-of-life conversations with family and friends by taking the frightening-talking about death-and transforming it into the familiar-a conversation over dinner. This qualitative, descriptive study uses grounded theory and thematic analysis to answer the following research question: How do friend and family groups communicate about death and dying in DoD conversations? To answer this question, 52 dinner groups were recruited and conversations were conducted, which consisted of a facilitator and volunteers. The facilitators were the researchers or research assistants who allowed dinner participants to control the conversation and identify topics of interest, and participants were free to share as much or as little as they wanted. Our analysis revealed that family and friend groups communicated similarly in that they talked about similar topics and used similar communication strategies to discuss those topics. Three major themes emerged: Desire for a good death, which juxtaposed people's perceptions of a "dreaded" death with those of a "desirable" death; tactics for coping, which consisted of the subthemes of humour to diffuse tension or deflect discomfort, spiritual reassurance, and topic avoidance; and topics that elicit fear or uncertainty, which consisted of the subthemes of organ and whole-body donation, hospice and palliative care, wills and advance directives. Ultimately, however, participants felt their experiences were positive and DoD shows promise as a tool for families to engage in end-of-life conversations. ]
Nedjat-Haiem, F. R., Carrion, I. V., Gonzalez, K., Ell, K., Thompson, B. and Mishra, S. I. "Exploring health care providers' views about initiating end-of-life care communication." American Journal of Hospice & Palliative Medicine 34, no. 4 (May 2017): 308-317 . [(Abstract:) Numerous factors impede effective and timely end-of-life (EOL) care communication. These factors include delays in communication until patients are seriously ill and/or close to death. Gaps in patient-provider communication negatively affect advance care planning and limit referrals to palliative and hospice care. Confusion about the roles of various health care providers also limits communication, especially when providers do not coordinate care with other health care providers in various disciplines. Although providers receive education regarding EOL communication and care coordination, little is known about the roles of all health care providers, including nonphysician support staff working with physicians to discuss the possibility of dying and help patients prepare for death. This study explores the perspectives of physicians, nurses, social workers, and chaplains on engaging seriously ill patients and families in EOL care communication. Qualitative data were from 79 (medical and nonmedical) providers practicing at 2 medical centers in Central Los Angeles. Three themes that describe providers' perceptions of their roles and responsibility in talking with seriously ill patients emerged: (1) providers' roles for engaging in EOL discussions, (2) responsibility of physicians for initiating and leading discussions, and (3) need for team co-management patient care. Providers highlighted the importance of beginning discussions early by having physicians lead them, specifically due to their medical training and need to clarify medical information regarding patients' prognosis. Although physicians are a vital part of leading EOL communication, and are at the center of communication of medical information, an interdisciplinary approach that involves nurses, social workers, and chaplains could significantly improve patient care.]
VI. The Conversation Project is a private initiative to encourage individuals' discussions of end-of-life care wishes. It is a collaboration with the non-profit Institute for Healthcare Improvement, and has been supported by a number of hospitals and health systems (--see "Pioneering Health Care Organizations Pledge to Become 'Conversation Ready'") and as such has involved chaplains in institutions' action plans. Project tools have been incorporated into research (e.g., a "Starter Kit" conversation guide was used in Lum, H. D., Jones, J., Matlock, D. D., Glasgow, R. E., Lobo, I., Levy, C. R., Schwartz, R. S., Sudore, R. L. and Kutner, J. S., "Advance care planning meets group medical visits: the feasibility of promoting conversations," Annals of Family Medicine 14, no. 2 (March 2016): 125-132); but overall there has been little investigation up to this point.