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Purpose: Advance directives (AD) have been heralded as vehicles to promote patient autonomy and have been decried as ineffective. Efforts to improve advance care planning (ACP) and AD documents are wide ranging but have not been prospectively studied., Materials and Methods: In an institutional review board-approved, single-blind, randomized, controlled trial, we compared an interactive, educational ACP decision aid to standard ACP among patients with advanced cancer. We hypothesized that use of the decision aid would increase physician awareness of patients' health care wishes and increase physician adherence to patients' end-of-life wishes compared with standard ACP., Results: A total of 200 patients were randomly assigned to two study arms. We analyzed data from medical records and interviews with physicians and family members for 121 patients who died by August 2016. No differences in physician awareness or adherence were found between the ACP decision aid and standard ACP groups. End-of-life treatment wishes and discussion of wishes were documented for 70% and 64% of the patients, respectively, but only 35% had an actual AD in the medical record. According to family members, end-of-life care was consistent with the patients' stated wishes 94% of the time. Similarly, according to physicians, it was consistent for 98%. However, according to AD documents, delivered care was consistent with desired care in only 65%. Considerably fewer patients than predicted died, and data from physicians were difficult to obtain., Conclusion: ACP type did not influence documentation of patient wishes or end-of-life care received. Future prospective studies must account for challenges in prognostication and point-of-care data collection at the end of life.

Background:: Optimizing recruitment efficiency is an important strategy to address the resource limitations that typically constrain clinical research. Surprisingly, little empiric data exist to guide research teams attempting to recruit a difficult population into similar studies. Our objective was to investigate factors associated with enrollment into an advance care planning interventional trial., Methods:: This study used secondary data of patients with advanced cancer receiving treatment at an academic medical center in central Pennsylvania who were referred to a randomized controlled trial of an advance care planning intervention. Enrolled participants were compared to nonparticipants with regard to age, gender, race, season of recruitment, elapsed time between recruitment stage, distance to study site, and number of recruitment calls., Results:: Of the 1988 patients referred, 200 participants were enrolled yielding a recruitment efficiency of 10%. Two-thirds of all enrolled participants were recruited with 1 or less phone calls, whereas only 5% were enrolled after 3 calls. There were no statistically significant differences in enrollment based on gender ( P = .88) or elapsed time between recruitment contacts ( P = .22). However, nonparticipants were slightly older ( P = .02)., Conclusions:: Our finding that individuals were more likely to enroll within the first 3 phone calls suggests that recruitment efforts should be focused on making initial contacts with potential participants, rather than continuing attempts to those who are unable to be contacted easily. Researchers could optimize their recruitment strategy by periodically performing similar analyses, comparing differences between participants and nonparticipants.

Background: Advance care planning (ACP) has been shown to benefit patients and families, yet little is known about how an ACP event impacts communication and conversation about end-of-life treatment wishes and the content of such conversations between patients and family caregivers., Objective: To characterize post-ACP conversations regarding medical wishes between seriously ill patients and their family caregivers., Participants: Patients with advanced illness and family caregivers., Outcome Measured: Post-ACP conversations., Design: As part of a larger randomized controlled trial, dyads consisting of seriously ill patients and their identified family caregiver engaged in ACP and created an advance directive for the patient. Approximately 4 to 6 weeks later, semistructured interviews were conducted with the family caregivers to elucidate the subsequent communications regarding medical wishes. If the dyad did not have any conversations post-ACP, reasons and barriers were explored., Results: The majority of dyads (131/188, 69.7%) had 2 to 3 conversations lasting 3 to 5 minutes each in the weeks immediately following ACP. These conversations most commonly addressed general patient wishes about quality of life and specific medical treatments. The most common reasons for not having conversations were a general discomfort with the topic (13/57, 22.8%) and previously having discussed medical wishes (16/57, 28.1%)., Conclusion: The ACP events promote conversation regarding quality of life, general wishes at the end of life, and specific medical wishes. Barriers to conversation following ACP were similar to barriers to ACP in general, suggesting that a more intentional focus on addressing these barriers pre- and post-ACP may be necessary to improve communication.

Context: Discussing end-of-life issues with patients is an essential role for chaplains. Few tools are available to help chaplains-in-training develop end-of-life communication skills., Objective: This study aimed to determine whether playing an end-of-life conversation game increases the confidence for chaplain-in-trainings to discuss end-of-life issues with patients., Methods: We used a convergent mixed methods design. Chaplains-in-training played the end-of-life conversation game twice over 2 weeks. For each game, pre- and postgame questionnaires measured confidence discussing end-of-life issues with patients and emotional affect. Between games, chaplains-in-training discussed end-of-life issues with an inpatient. One week after game 2, chaplains-in-training were individually interviewed. Quantitative data were analyzed using descriptive statistics and Wilcoxon rank-sum t tests. Content analysis identified interview themes. Quantitative and qualitative data sets were then integrated using a joint display., Results: Twenty-three chaplains-in-training (52% female; 87% Caucasian; 70% were in year 1 of training) completed the study. Confidence scores (scale: 15-75; 75 = very confident) increased significantly after each game, increasing by 10.0 points from pregame 1 to postgame 2 ( P < .001). Positive affect subscale scores also increased significantly after each game, and shyness subscale scores decreased significantly after each game. Content analysis found that chaplains-in-training found the game to be a positive, useful experience and reported that playing twice was beneficial (not redundant)., Conclusion: Mixed methods analysis suggest that an end-of-life conversation game is a useful tool that can increase chaplain-in-trainings' confidence for initiating end-of-life discussions with patients. A larger sample size is needed to confirm these findings.

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., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose: To determine whether an advance care planning (ACP) decision-aid could improve communication about end-of-life treatment wishes between patients with amyotrophic lateral sclerosis (ALS) and their clinicians., Methods: Forty-four patients with ALS (>21, English-speaking, without dementia) engaged in ACP using an interactive computer based decision-aid. Before participants completed the intervention, and again three months later, their clinicians reviewed three clinical vignettes, and made treatment decisions (n = 18) for patients. After patients indicated their agreement with the team's decisions, concordance was calculated., Results: The mean concordance between patient wishes and the clinical team decisions was significantly higher post-intervention (post = 91.9%, 95% CI = 87.8, 96.1, vs. pre = 52.4%, 95% CI = 41.9, 62.9; p <0.001). Clinical team members reported greater confidence that their decisions accurately represented each patient's wishes post-intervention (mean = 6.5) compared to pre-intervention (mean = 3.3, 1 = low, 10 = high, p <0.001). Patients reported high satisfaction (mean = 26.4, SD = 3.2; 6 = low, 30 = high) and low decisional conflict (mean = 28.8, SD = 8.2; 20 = low, 80 = high) with decisions about end-of-life care, and high satisfaction with the decision-aid (mean = 52.7, SD = 5.7, 20 = low, 60 = high). Patient knowledge regarding ACP increased post-intervention (pre = 47.8% correct responses vs. post = 66.3%; p <0.001) without adversely affecting patient anxiety or self-determination., Conclusion: A computer based ACP decision-aid can significantly improve clinicians' understanding of ALS patients' wishes with regard to end-of-life medical care.

Background: People with cancer face complex medical decisions, including whether to receive life-sustaining treatments at the end of life. It is not unusual for clinicians to make assumptions about patients' wishes based on whether they had previously chosen to pursue curative treatment., Objective: We hypothesized that cancer patients who initially underwent curative intent surgery (CIS) would prefer more aggressive end-of-life treatments compared to patients whose treatment was noncurative intent (non-CIT)., Methods: This study was a retrospective review of data from a large, randomized controlled trial examining the use of an online decision aid for advance care planning, "Making Your Wishes Known" (MYWK), with patients who had advanced cancer. We reviewed patients' medical records to determine which patients underwent CIS versus non-CIT. In the parent trial, conducted at an academic medical center (2007-2012), 200 patients were enrolled with stage IV malignancy or other poor prognosis cancer. Patients' preferences for aggressive treatment were measured in two ways: using patient-selected General Wishes statements generated by the decision aid and patient-selected wishes for specific treatments under various hypothetical clinical scenarios (Specific Wishes)., Results: We evaluated 79 patients. Of these, 48 had undergone initial CIS and 31 had non-CIT. Cancer patients who initially underwent CIS did not prefer more aggressive end-of-life treatments compared to patients whose treatment was non-CIT., Conclusions: Clinicians should avoid assumptions about patients' preferences for life-sustaining treatment based on their prior choices for aggressive treatment.

Objective: Few studies have evaluated the end-of-life preferences of elderly patients in rural communities and whether preferences are associated with level of health literacy., Design: Randomized controlled trial of a goals-of-care video decision aid of advanced dementia., Participants: Elderly subjects (65 years or older) at a primary care clinic in rural Louisiana., Methods: Half of subjects heard a verbal description of advanced dementia and the goals of care; the other half heard the same verbal description and then viewed the video decision aid. End points were the preferred goal of care in advanced dementia: life-prolonging care (cardiopulmonary resuscitation [CPR], etc.), limited care (hospitalization but not CPR), or comfort care (symptom relief). The principal category for analysis was the difference in proportions of subjects preferring comfort care for each characteristic including randomization group and health literacy level., Results: Seventy-six subjects were randomized to the verbal (n = 43) or video (n = 33) arms of the study. Among subjects receiving the verbal description of advanced dementia and the goals of care, 31 (72%) preferred comfort; 5 (12%) chose limited; and 7 (16%) desired life-prolonging. In the video group, 30 (91%) preferred comfort; 3 (9%) chose limited; and none desired life-prolonging (χ(2) = 6.3, df = 2, p = 0.047). Factors associated with greater likelihood of opting for comfort included greater health literacy (unadjusted odds ratio [OR] 12.1; 95% confidence interval [CI], 2.4-62.6) and randomization to the video (unadjusted OR 3.9; 95% CI, 1.0-15.1)., Conclusion: Rural subjects with higher health literacy were more likely to want comfort care compared to those with lower levels of health literacy. Furthermore, subjects who viewed a video decision aid were more likely to opt for comfort compared to those who solely listened to a verbal description. These findings suggest that video can help elicit preferences and that interventions to empower such patients need to be designed in a manner that is sensitive to health literacy.

In the face of mounting criticism against advance directives, we describe how a novel, computer-based decision aid addresses some of these important concerns. This decision aid, Making Your Wishes Known: Planning Your Medical Future, translates an individual's values and goals into a meaningful advance directive that explicitly reflects their healthcare wishes and outlines a plan for how they wish to be treated. It does this by (1) educating users about advance care planning; (2) helping individuals identify, clarify, and prioritize factors that influence their decision-making about future medical conditions; (3) explaining common end-of-life medical conditions and life-sustaining treatment; (4) helping users articulate a coherent set of wishes with regard to advance care planning-in the form of an advance directive readily interpretable by physicians; and (5) helping individuals both choose a spokesperson, and prepare to engage family, friends, and health care providers in discussions about advance care planning.

Background: African Americans have low engagement in advance care planning (ACP). This has been attributed to healthcare distrust and skepticism about ACP. A better understanding of these attitudes is needed to address health disparities related to end-of-life care. Objective: To explore the ACP-related values and beliefs of diverse African American communities across the USA and then the perceived value of an inexpensive end-of-life conversational game. Design: Prospective, convergent, mixed methods cohort study involving fifteen underserved, African American communities across the USA. Participants: Of the 428 who attended events at purposively sampled sites, 90% consented to the research; 37% participated in one of 15 focus groups (n = 141). Intervention: An end-of-life conversation game, played in groups of 4–6. Main Measures: The validated, 7-item ACP values and beliefs questionnaire (scaled 7 = least skeptical, 49 = most skeptical) was administered pre-game. Post-game focus groups explored perceptions about ACP and the intervention. Key Results: Participants had positive attitudes (low skepticism) about ACP with a median score of 12.00 (7.00, 20.00). Values and beliefs did not significantly differ by geographical region; however, rural areas were observed to be slightly more skeptical than urban areas (median score 14.00 vs. 11.00, p = 0.002). Themes from focus groups converged with survey data showing participants valued the ACP process and consider further engagement in ACP to be worthwhile. Subthemes emphasized the need for and value of ACP. Conclusions: Skepticism about ACP may contribute to low rates of ACP engagement in underserved African American communities. The positive attitudes uncovered in our study either negate previous findings or suggest reduced skepticism. Trial Registration: This study has been registered at clinicaltrials.gov (NCT03456921) [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Purpose Advance directives have been criticized for failing to help physicians make decisions consistent with patients' wishes. This pilot study sought to determine if an interactive, computer-based decision aid that generates an advance directive can help physicians accurately translate patients' wishes into treatment decisions. Methods We recruited 19 patient-participants who had each previously created an advance directive using a computer-based decision aid, and 14 physicians who had no prior knowledge of thephysicians were randomly assigned to review the advance directive and make five to six treatment decisions for each of six (potentially) end-of-life clinical scenarios. From the three individual physicians' responses, a "consensus physician response" was generated for each treatment decision (total decisions = 32). This consensus response was shared with the patient whose advance directive had been reviewed, and she/he was then asked to indicate how well the physician translated his/her wishes into clinical decisions. Results Patient-participants agreed with the consensus physician responses 84 percent (508/608) of the time, including 82 percent agreement on whether to provide mechanical ventilation, and 75 percent on decisions about cardiopulmonary resuscitation (CPR). Across the six vignettes, patient-participants' rating of how well physicians translated their advance directive into medical decisions was 8.4 (range = 6.5-10, where 1 = extremely poorly, and 10 = extremely well). Physicians' overall rating of their confidence at accurately translating patients' wishes into clinical decisions was 7.8 (range = 6.1-9.3, 1 = not at all confident, 10 = extremely confident). Conclusion For simulated cases, a computer-based decision aid for advance care planning can help physicians more confidently make end-of-life decisions that patients will endorse. [ABSTRACT FROM AUTHOR]

Background: Underserved and minority populations are often reluctant to engage in advance care planning and/or research often due to distrust in healthcare and/or research institutions.Aim: To determine if use of a community-based delivery model can facilitate recruitment of individuals from underserved communities in research about advance care planning.Design: Recruitment data are presented from a prospective, mixed methods observational cohort study that examined the feasibility and preliminary efficacy of a community-based delivery model involving an end-of-life conversation game to motivate participants to complete advance care planning behaviors. Event attendance and research participation data are reported.Setting/participants: Game events were held in community venues in 27 states across the US in 2018-2019. The model involved leveraging existing social networks to recruit attendees and research participants to community game day events. Attendees were eligible for research if they were adults who read/spoke English.Results: A total of 1,122 individuals attended events at 53 sites. Participants generally reported low income (48% reported $30,000 annual income). At sites with research assistants, there was a 90% consent rate (92% were Black). At community outreach sites, 45% agreed to a follow-up research phone call (49% were Black).Conclusions: Use of the community-based delivery model successfully engaged undeserved communities in a research-based advance care planning related community outreach event. This model may be useful for overcoming underserved and minority populations' skepticism and distrust of healthcare and research that is a common barrier to progress in health agendas, especially advance care planning. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]