Advance Care Planning Intervention Research Articles

Conditions Associated with the Pragmatic Implementation of an Advance Care Planning Intervention in Nursing Homes (RP125)

Conditions Associated with the Pragmatic Implementation of an Advance Care Planning Intervention in Nursing Homes (RP125)

Culturally Sensitive Advance Care Planning for African American Advanced Cancer Patients: A Pilot Randomized Controlled Trial

ContextRacial disparities in advance care planning (ACP) have been consistently identified in the literature. Few interventions have been designed to address the disparities identified. ObjectivesTo assess the feasibility, acceptability, and preliminary efficacy of a culturally sensitive, pilot ACP intervention for African American patients diagnosed with cancer in a safety net healthcare system. MethodsEligible patients with stage II, III, or IV breast, lung, colorectal, or prostate cancer were identified from the electronic health record, recruited, and randomized to the intervention group or usual care control group. Intervention participants met with an African American lay health advisor who assisted them in watching a video that addressed completion of ACP and facilitated ACP discussion. Descriptive analyses were conducted to examine baseline sociodemographic and clinical characteristics, cancer health literacy, and religious coping among participants. Logistic regression analyses were conducted to evaluate predictors of positive change in stage of intent to discuss ACP at 1, 3, and 6-months post intervention. ResultsSeventy-six participants were recruited and randomized (38 intervention, 38 controls). The mean age for participants was 58.8 years (SD 10.8), 62.5% were female, and 90.2% had stage III or IV disease. The intervention proved feasible with 89.5% completion. Intervention participants were more likely to have a positive change in stage of intent to discuss a living will or advance directive than usual care controls at one-month (AOR: 4.57, 95%CI: 1.11, 18.82) and 3-months (AOR: 5.38, 95%CI: 1.05, 27.68) post-intervention. The majority (94.1%) of intervention participants would recommend the intervention to a friend or family member. ConclusionThis culturally sensitive ACP program proved to be feasible, acceptable to participants, and showed some promise in promoting discussion about ACP among participants and members of their healthcare team.

Measuring patients’ medical treatment preferences in advance care planning: development and validation of the Treat-Me-ACP instrument – a secondary analysis of a cluster-randomized controlled trial

BackgroundAdvance Care Planning interventions should be evaluated as broadly as possible to gain a holistic understanding of the Advance Care Planning process. However, validated early stage outcome instruments are lacking. Therefore, the Treatment-Preference-Measure-Advance Care Planning (Treat-Me-ACP) instrument was developed and validated as part of the cluster-randomized controlled trial STADPLAN (Study on Advance Care Planning in care-dependent community-dwelling older persons) to assess the effects of Advance Care Planning interventions on patients’ medical treatment preferences.MethodsThe design of Treat-Me-ACP is based on the Emanuel Medical Directive and the Life Support Preferences Questionnaires. Using a multi-stage team approach a preliminary version of the Treat-Me-ACP was developed and pre-tested. The pre-tested instrument consists of one global medical care goal-item, five hypothetical scenarios with five hypothetical treatments, and one how would you feel-item within each scenario. A total of five scenario preference scores and five treatment preference scores can be formed. This version was subsequently applied to a subsample of the STADPLAN project (n = 80) to assess patient’s preferences at baseline (T0) and at 12-month follow-up (T2). The further validation steps were based on this subsample and included: (1) acceptance by using completion rate and frequencies of missing data, (2) internal consistency by using Cronbach’s α to test whether it was possible to create preference scores by scenario and treatment, (3) concurrent validation examining the association between the global medical care goal-item and the preference scores and the association between the how would you feel-items and the scenario preference scores, and (4) responsiveness of the instrument to changes in preferences for life-sustaining treatments by comparing preference scores from T0 to T2 between study groups.ResultsAcceptance of the instrument was high. Results of concurrent validation indicate that the five scenarios represent the global medical care goal well. The preference scores showed an average tendency for decreasing preferences for life-sustaining treatments across all scales for the intervention group during study follow-up.ConclusionsThe Treat-Me-ACP can be used to evaluate the dynamics of patients’ medical treatment preferences in Advance Care Planning. It has been validated for care-dependent community-dwelling older persons and can be used as an additional outcome measure in evaluating the effectiveness of ACP interventions.Trial registrationGerman Clinical Trials Register: DRKS00016886 on 04/06/2019.

A Mixed-Methods Comparison of Interventions to Increase Advance Care Planning.

Although interventions can increase advance care planning (ACP) engagement, it remains unclear which interventions to choose in primary care settings. This study compares a passive intervention (mailed materials) to an interactive intervention (group visits) on participant ACP engagement and experiences. We used mixed methods to examine ACP engagement at baseline and six months following two ACP interventions. Eligible patients were randomized to receive mailed materials or participate in two ACP group visits. We administered the 4-item ACP Engagement survey (n = 110) and conducted interviews (n = 23). We compared mean scores and percent change in ACP engagement, analyzed interviews with directed content analysis to understand participants' ACP experiences, and integrated the findings based on mailed materials or group visits intervention. All participants demonstrated increased ACP engagement scores. At six months, group visit participants reported higher percent change in mean overall score compared with mailed materials participants (+8% vs +3%, P < .0001). Group visits participants reported that being prompted to think about end-of-life preferences, gaining knowledge about ACP, and understanding the value of completing ACP documentation influenced their ACP readiness. While both interventions encouraged patients to start considering and refining their end-of-life preferences, group visits made patients feel more knowledgeable about ACP, highlighted the importance of completing ACP documentation early, and sparked further ACP discussions with others. While primary care patients may benefit from mailed ACP materials, patients reported increased readiness after ACP group visits. Group visits emphasized the value of upstream preparation, ongoing conversations, and increased knowledge about ACP.

Finding the balance between person-centred and treatment-centred discussions in advance care planning-a qualitative analysis of conversations within the MUTUAL (Multidisciplinary Timely Undertaken Advance Care Planning conversations) intervention using a narrative analysis.

Advance care planning (ACP) aims to create conditions for more person-centred care. We aimed to explore variations in person-centred care discussions and treatment-centred care discussions within ACP conversations in the Multidisciplinary Timely Undertaken Advance Care Planning (MUTUAL) intervention and how person-centred care discussions could be encouraged. The MUTUAL intervention consists of the following: (i) timely patient selection, (ii) the patient and healthcare professionals preparing for the conversation, (iii) a scripted ACP conversation in a multidisciplinary setting and (iv) documentation. We conducted a narrative analysis of ACP conversations. A narrative summary template was created and used to analyse 18 audio-recordings. We noticed variations in person-centred and treatment-centred focus within the ACP conversations. We identified three important strategies that facilitated person-centred care discussions within ACP conversations. First, healthcare professionals' acceptance that ACP is an individual process. We believe it is important that healthcare professionals recognise and accept where the patient is in his or her individual ACP process; not making decisions right away can also be part of a decisional process. Secondly, exploring the underlying motivation for treatment wishes can give insights into patient's wishes, values and needs. Lastly, healthcare professionals who demonstrated an adaptive, curious and engaged attitude throughout the ACP process achieved more person-centred ACP conversations. This coincided with elaborating on the patient's emotions, fears and worries. Person-centred and treatment-centred focus varied within the ACP conversations in the MUTUAL intervention. Certain strategies by healthcare professionals facilitated a more person-centred focus.

Implementation of advance care planning in the routine care for acutely admitted patients in geriatric units: protocol for a cluster randomized controlled trial

BackgroundAcutely ill and frail older adults and their next of kin are often poorly involved in treatment and care decisions. This may lead to either over- or undertreatment and unnecessary burdens. The aim of this project is to improve user involvement and health services for frail older adults living at home, and their relatives, by implementing advance care planning (ACP) in selected hospital wards, and to evaluate the clinical and the implementation interventions.MethodsThis is a cluster randomized trial with 12 hospital units. The intervention arm receives implementation support for 18 months; control units receive the same support afterwards. The ACP intervention consists of 1. Clinical intervention: ACP; 2. Implementation interventions: Implementation team, ACP coordinator, network meetings, training and supervision for health care personnel, documentation tools and other resources, and fidelity measurements with tailored feedback; 3. Implementation strategies: leadership commitment, whole ward approach and responsive evaluation. Fidelity will be measured three times in the intervention arm and twice in the control arm. Here, the primary outcome is the difference in fidelity changes between the arms. We will also include 420 geriatric patients with one close relative and an attending clinician in a triadic sub-study. Here, the primary outcomes are quality of communication and decision-making when approaching the end of life as perceived by patients and next of kin, and congruence between the patient’s preferences for information and involvement and the clinician’s perceptions of the same. For patients we will also collect clinical data and health register data. Additionally, all clinical staff in both arms will be invited to answer a questionnaire before and during the implementation period. To explore barriers and facilitators and further explore the significance of ACP, qualitative interviews will be performed in the intervention units with patients, next of kin, health care personnel and implementation teams, and with other stakeholders up to national level. Lastly, we will evaluate resource utilization, costs and health outcomes in a cost-effectiveness analysis.DiscussionThe project may contribute to improved implementation of ACP as well as valuable knowledge and methodological developments in the scientific fields of ACP, health service research and implementation science.Trial registrationClinicalTrials.gov Identifier NCT05681585. Registered 03.01.23.

Implementation of an Advance Care Planning Intervention in Nursing Homes: An International Multiple Case Study.

The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention. A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom. Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.

Measures of Patient and Surrogate Preparedness for End-of-Life Decision-Making

ContextReliable and valid measures are critical in accurately assessing outcomes of advance care planning interventions (ACP) for end-of-life (EOL) decision-making. ObjectivesTo develop measures of preparedness for EOL decision-making for patients with end-stage renal disease and their surrogates (an exemplar population). MethodsIn this 3-phase study, Phases 1 and 2 included a cross-discipline concept analysis of the preparedness construct, item generation for patient and surrogate scales (82 items), evaluation of content validity and readability, cognitive interviewing, and item reduction. In phase 3, the retained 26 patient and 25 surrogate items were administered to 426 patients and 426 surrogates during a multisite trial of an ACP intervention versus care-as-usual and evaluated internal consistency, 2-week test-retest reliability, and construct validity. ResultsScales were reduced to 20 patient and 19 surrogate items during phase 3. Cronbach's alphas were 0.86 (patient) and 0.90 (surrogate). There was a strong correlation between preparedness at baseline and two weeks for both scales (r = 0.66–0.69, P < 0.001). Confirmatory factor analysis and item-response analyses suggested unidimensionality. A significant correlation was shown between patient preparedness and patient decisional conflict (r = -0.53, P < 0.001), and surrogate preparedness and surrogate decision-making confidence (r = 0.44, P < 0.001). Among those who received the ACP intervention, the effect size of change was medium: Cohen's d = 0.54, P < 0.001 for patients and d = 0.57, P < 0.001 for surrogates. ConclusionsThe preparedness scales demonstrated strong psychometric properties. Future studies should examine scale performance in other populations.

Effectiveness of an Advance Care Planning Intervention in Adults Receiving Dialysis and Their Families

Evidence of effectiveness of advance care planning (ACP) strategies for patients receiving dialysis and their families is needed. To test the effectiveness of an ACP intervention to prepare patients and their surrogates for end-of-life (EOL) decision-making and to improve surrogate bereavement outcomes. This cluster randomized clinical trial, An Effectiveness-Implementation Trial of SPIRIT (Sharing Patients' Illness Representations to Increase Trust) in ESRD, was conducted from December 2017 to March 2023 and included 42 dialysis clinics in 5 US states (Georgia, New Mexico, North Carolina, Pennsylvania, and Virginia) randomized to provide intervention or usual care. Recruitment was from February 15, 2018, to January 31, 2022, and patient-surrogate dyads were followed up for 21 months (until January 17, 2023) or until patient death. Each clinic selected 1 or 2 health care workers (eg, nurse practitioner, registered nurse, or social worker) to conduct 45- to 60-minute ACP discussions with dyads in the clinic or remotely. After March 13, 2020 (commencement of the COVID-19 emergency declaration), all discussions were conducted remotely. An ACP summary was placed in patients' medical records. The primary, 2-week preparedness outcomes were dyad congruence on EOL goals of care, patient decisional conflict, surrogate decision-making confidence, and a composite of dyad congruence and surrogate decision-making confidence. Secondary bereavement outcomes were anxiety, depression, and posttraumatic distress 3 months after patient death. To adjust for COVID-19 pandemic effects on bereavement outcomes, a variable to indicate the timing of baseline and 3-month assessment relative to the COVID-19 emergency declaration was created. Of the 426 dyads enrolled, 231 were in the intervention clinics, and 195 were in the control clinics. Among all dyads, the mean (SD) patient age was 61.9 (12.7) years, and the mean (SD) surrogate age was 53.7 (15.4) years. At 2 weeks, after adjusting for baseline values, dyad congruence (odds ratio [OR], 1.61; 95% CI, 1.12-2.31; P = .001), decisional conflict scores (β, -0.10; 95% CI, -0.13 to -0.07; P < .001), and the composite (OR, 1.57; 95% CI, 1.06-2.34; P = .03) were higher in the intervention group than in the control group. Surrogate decision-making confidence was similar between groups (β, 0.06; 95% CI, -0.01 to 0.13; P = .12). Among 77 bereaved surrogates, after adjusting for baseline values and assessment timing, intervention group anxiety was lower than control group anxiety (β, -1.55; 95% CI, -3.08 to -0.01; P = .05); however, depression (β, -0.18; 95% CI, -2.09 to 1.73; P = .84) and posttraumatic distress (β, -0.96; 95% CI, -7.39 to 5.46; P = .75) were similar. In this randomized clinical trial, the ACP intervention implemented by health care workers at dialysis centers improved preparation for EOL decision-making but showed mixed effectiveness on bereavement outcomes. The ACP intervention implemented in dialysis centers may be an effective strategy to the dyad preparation for end-of-life care as opposed to the current focus on advance directives. ClinicalTrials.gov Identifier: NCT03138564.

Feasibility and acceptability of facilitated advance care planning in outpatient clinics: A qualitative study of health-care professionals experience.

This study sought to determine the feasibility and acceptability of a facilitated advance care planning (ACP) intervention implemented in outpatient clinics, as perceived by health-care professionals (HCPs). Data from seven focus groups (n = 27) and nine semi-structured interviews with HCPs recruited as part of a pragmatic, randomised controlled trial (RCT) were analysed using qualitative descriptive methodology. Components of the intervention included HCP education and training, tools to assist HCPs with patient selection, hardcopy information, and ACP documentation, and specialised nurse-facilitators to support HCPs to complete ACP conversations and documentation with patients and caregivers. Health-care professionals working in tertiary outpatient clinics perceived the facilitated ACP intervention as feasible and acceptable. Health-care professionals reported a high level of satisfaction with key elements of the intervention, including the specialised education and training, screening and assessment procedures and ongoing support from the nurse-facilitators. Health-care professionals reported this training and support increased their confidence and ACP knowledge, leading to more frequent ACP discussions with patients and their families. Health-care professionals noted their ability to conduct ACP screening and assessment in clinic was impeded by large clinical caseloads and patient-related factors (e.g., dementia diagnoses, and emotional distress). Additional barriers to ACP implementation identified by HCPs included poor collaboration, constrained time and clinical space, undefined roles and standardised recording procedures for HCPs. Facilitated ACP intervention in outpatient clinics is perceived by HCPs as feasible and acceptable. Addressing barriers and tailoring implementation strategies may improve the delivery of ACP as part of tertiary outpatient care.

Testing a Culturally Tailored Advance Care Planning Intervention (MY WAY) for an American Indian Tribe: Protocol for a Quasi-Experimental Waitlist Control Design.

American Indian and Alaska Native peoples experience poor end-of-life care, including more hospitalizations and lower use of hospice and do-not-resuscitate orders. Although advance care planning (ACP) can improve end-of-life care, ACP rates are disproportionately low in American Indians and Alaska Natives. We culturally tailored and delivered an existing evidence-based ACP program for an American Indian tribal community. Here, we present the protocol for assessing the intervention's feasibility and efficacy. We measured feasibility via participant recruitment, participants' evaluation (acceptability, appropriateness, comprehension, and satisfaction), and intervention fidelity. Recruitment was measured with participant screening, eligibility, enrollment, and retention. Participant's evaluation of the intervention was measured with surveys. Fidelity was measured with direct observation and the Make Your Wishes About You (MY WAY) Fidelity Checklist Tool. To assess the intervention's efficacy, we used a quasi-experimental waitlist control design with 2 cohorts who were surveyed each on three separate occasions. The intervention's efficacy was assessed by the following: ACP barriers and facilitators as well as ACP self-efficacy, readiness, and completion. A total of 166 participants were screened for eligibility; 11 were deemed ineligible, and 155 participants were enrolled in the study. Of those enrolled, 113 completed the intervention and will be included in subsequent analyses. We finalized data collection in January 2023, and analyses are underway. Study enrollment was successful, and we expect that participants will report high levels of acceptability, appropriateness, comprehension, and satisfaction with the intervention. We expect that the intervention was implemented with fidelity and will demonstrate decreases in ACP barriers and increases in ACP facilitators, self-efficacy, readiness, and completion. Enrolling over twice as many participants as we had hoped suggests that members of this tribal community are willing to engage in end-of-life ACP. We were able to implement a waitlist study design to show that a culturally tailored ACP program for a tribal community is feasible. ClinicalTrials.gov NCT05304117; https://clinicaltrials.gov/study/NCT05304117. DERR1-10.2196/50654.

Feasibility and Efficacy of the LEAD Dementia Advance Care Planning Intervention

AbstractBackgroundUsing our dementia‐focused advance care planning tool (ACP), known as the LEAD Guide (Life‐Planning in Early Alzheimer’s and Other Dementias),1‐3 we implemented a 9‐month NIH Stage‐14 behavioral intervention to promote ACP concordance in community‐based ADRD dyads. Dyads consisted of care recipients (persons concerned about dementia or those with a diagnosis of preclinical or early‐stage dementia) and their care partner. The goal of this study was to assess the feasibility and initial efficacy of the intervention.MethodFeasibility was assessed by examining the percent of enrollment of eligible participants, retention rate, and completion of data collection across study timepoints through the post intervention assessment. To explore the initial efficacy of the LEAD Intervention on study outcomes (ACP completion and dissemination, relationship quality, decision‐making self‐efficacy), we utilized longitudinal survey‐based measures to assess dyadic constructs that illustrate how the dyad functioned over time. Baseline to post changes were examined utilizing mixed effects models.ResultsWe screened 73 dyads, 58 dyads were eligible and 51 dyads participated in the study (see Figure 1 and Table 1). There were 34 dyads (67.7% retention) that completed baseline through the post‐intervention assessments. Table 2 shows results of changes in self‐report measures between baseline and post. Scores on the Decision‐Making Self‐Efficacy Scale5 revealed improved efficacy in both the care recipient and care partner at post intervention compared to baseline. Analysis showed no significant improvement in the positive domain of the Dyadic Relationship Scale6 in either care recipient or care partner, however, relationship strain domain significantly declined following the intervention in both the care recipient and care partner. Of the 51 starting dyads, 27 care recipients had already completed an advanced directive. By post, an addition 7 had completed an advanced directive, 9 were planning on completing, and 33 had shared ACP documents with others.ConclusionThe web‐based, self‐administered LEAD Intervention is a feasible and effective platform to promote ACP planning in community‐based ADRD dyads. Participation in ACP conversations and documentation can help reduce relationship strain and improve decision‐making self‐efficacy, thus promoting future care decisions that align with the care recipient’s values and preferences.

Factors influencing engagement in advance care planning in the community: A mixed-research synthesis

Abstract Background The development of innovative Advance Care Planning (ACP) health behaviour change interventions for adults (≥50 years old) in the community should be informed by a findings synthesis. The objectives of this review were to (a) identify stakeholders' perspectives on facilitators and barriers to ACP behaviours and (b) map these factors across the Capability, Opportunity, and Motivation dimensions of behaviour (COM-B model). Methods This hybrid mixed-research synthesis followed a published protocol. Content analysis was applied to the results sections of the included studies. Data transformation and triangulation processes underpinned findings integration (4,5). Results The review included 117 records and studies recruited patients (62%), service providers (29%), and trusted others (9%). ACP behaviours were ACP as a general concept, (41%), communication (28.7%), documentation (22%), decision-making (5.3%), or surrogate appointment (3%). Ten categories of influencing factors were identified, ranked according to frequency of reporting. They included Connectedness, Psychological Factors, Metapreferences, Service Provision, Temporality, Sociodemographic Characteristics, Literacy, Resources, Experience, and Macro-Level Factors. Their sub-categories (52 in total) were mapped across the COM-B model. The most frequently reported Motivation sub-categories were Comfort and Readiness (n = 78), Actors and Roles Requirements (n = 56), and Perceptions and Beliefs (n = 45). The Opportunity dimension included Communication and Understanding (n = 43), Effect of the Other (n = 42), and Involvement and Collaboration (n = 41). The top Capability sub-category was ACP literacy (n = 43). Discussion The triangulation of stakeholders' perspectives facilitated identification a complex array of factors influencing ACP behaviours. Their mapping across the COM-B model informed future research, policy, and ACP intervention development. Key messages • Stakeholders’ engagement in ACP behaviours is influenced by a complex array of factors, with the majority of them falling into the categories of motivation and opportunity. • Future ACP interventions design need to build on this learning and develop strategies and policies that support meaningful stakeholders’ engagement in ACP activities, including their collaboration.

I kua na'u "Let me carry out your last wishes" Clinical trial protocol to promote advance care planning among native Hawaiian populations

Advance Care Planning (ACP) is a communication process about serious illness decision making designed to inform patients of possible medical options. Native Hawaiians consistently have low rates of ACP and low use of palliative and hospice care services. Our multidisciplinary community and research group partnered to create I kua na'u “Let Me Carry Out Your Last Wishes,” an ACP intervention featuring culturally tailored videos and are now testing its efficacy. Focus groups and informant interviews were conducted with Native Hawaiian community members to ensure the curriculum honored the history, opinions, and culture of Native Hawaiians. Native Hawaiian culture has traditionally been an oral culture; the spoken word transmitted the moʻolelo, stories, traditions, histories and genealogies, which merges seamlessly with video media. The I kua na'u intervention included multiple educational sessions enhanced with videos (informational and personal). The specific aims are to compare ACP knowledge (primary outcome) and readiness for ACP engagement, ACP preferences, decisional conflict, and ACP completion rates via electronic medical record review (secondary outcomes) in 220 Native Hawaiians over age 55 in: (a) a randomized controlled trial of 110 people recruited from ambulatory clinics, and (b) a pre-post study design among 110 people living on Hawaiian Homestead communities located on lands set aside for Native Hawaiians or assisted living.Our protocol aims to evaluate the efficacy of our video-based educational intervention for Native Hawaiians to support decision making in this community and decrease disparities in serious illness care.Clinical Trial Registration Number: NCT04771208

Using the Kipling method to explore the contextual factors of decision-making during advance care planning for older cancer patients, their family, and health-care professionals: A qualitative secondary analysis.

Advance care planning (ACP) interventions are supposed to affect patients' autonomy and family health-care outcomes positively. However, the clinical benefits of ACP actualization and associated contextual factors merit questioning. Therefore, this study explores the critical contextual and procedural factors related to ACP decision-making based on the actual situation of older patients with cancer encountering end-of-life care in Taiwan. This retrospective qualitative secondary analysis used the Kipling method (5W1H) to explore further the critical contextual and procedural factors related to ACP decision-making processes. We applied thematic analysis and dual coding for 35 narratives, including 10 patients with cancer, 10 family caregivers, and 15 health-care staff, derived from a preliminary qualitative study regarding palliative care decision-making among patients with advanced cancer, their families, and health-care staff. We identified 6 domains detailing the contextual factors for ACP decision-making: (1) WHO (decision makers); (2) WHAT (discussion content); (3) WHEN (care plan for which disease stage); (4) WHERE (patient's situational location); (5) WHY (reasons underpinning the decisions); and (6) HOW (the way to form the decisions). Using the Kipling method to elaborate the contextual factors for ACP decision-making among older patients with cancer strengthens the understanding of complicated end-of-life care decision-making procedure. This study also demonstrates the dynamic and cultural complexity and the various factors considered during end-of-life care and future ACP discussion.

Dyadic advance care planning: systematic review of patient–caregiver interventions and effects

IntroductionFamily caregiver’s involvement in advance care planning (ACP) is essential to provide high-quality end-of-life (EOL) care and to ease the surrogate decision-making burden. However, no systematic review has focused on...

Examining the Cultural Appropriateness of Advance Care Planning Tools for Adolescents and Young Adults With Cancer: An Example of Cross-Cultural Adaptation of the Voicing My CHOiCES Tool

Advance care planning (ACP) is crucial in supporting optimal, patient-centered care for adolescents and young adults (AYAs) with life-limiting illnesses and can reduce unwanted outcomes at end-of-life. While several ACP tools and interventions have been designed for AYAs, most of these were developed in the United States of America (USA). This paper describes a study designed to adapt the AYA ACP tool, Voicing My CHOiCES (VMC), for the Australian population. A 2-stage mixed methods approach was used. Stage 1 involved a multiperspective interview to determine changes for the new Australian VMC. Participants were AYAs between the ages of 15 to 25, healthcare professionals, and parents. For each section, participants responded to questions targeting the helpfulness and usefulness of the items as well as open-ended questions about any suggested content or formatting changes. Stage 2 used think-aloud interviews asking AYA cancer patients and survivors aged between 15 and 39 years to respond to proposed changes for the Australian VMC. Stage 1 participants suggested changes to all pages of VMC, with proposed changes being based around language, content, and format. Stage 2 participants qualitatively confirmed the acceptability of these changes. Our data suggests that even between similar Western cultures, significant adaptations can be made to make ACP tools more culturally appropriate. More research is needed to further adapt ACP tools like VMC for culturally and linguistically diverse groups and to ensure these tools can be accessed by all AYAs with life-limiting illness.

Community-led, peer-facilitated Advance Care Planning workshops prompt increased Advance Care Planning behaviors among public attendees

ObjectiveDespite recognized benefits, engagement in Advance Care Planning (ACP) remains low. Research into peer-facilitated, group ACP interventions is limited. This study investigated the acceptability of community-led peer-facilitated ACP workshops for the public and whether these workshops are associated with increased knowledge, motivation and engagement in ACP behaviors. MethodsPeer-facilitators from 9 community organizations were recruited and trained to deliver free ACP workshops to members of the public with an emphasis on conversation. Using a cohort design, workshop acceptability and engagement in ACP behaviors was assessed by surveying public participants at the end of the workshop and 4–6 weeks later. Results217 participants returned post-workshop questionnaires, and 69 returned follow-up questionnaires. Over 90% of participants felt they gained knowledge across all 6 learning goals. Every ACP behavior saw a statistically significant increase in participant completion after 4–6 weeks. Almost all participants were glad they attended (94%) and would recommend the workshop to others (95%). ConclusionThis study revealed an association of peer-facilitated ACP workshops and completion of ACP behaviors in public participants. InnovationThis innovative approach supports investment in the spread of community-based, peer-facilitated ACP workshops for the public as important ACP promotion strategies.

Implementation Challenges for a Multisite Advance Care Planning Pragmatic Trial: Lessons Learned.

Advance care planning (ACP) pragmatic trials are needed. We determined key system-level activities to implement ACP interventions for a cluster-randomized pragmatic trial. We identified patients with serious illness from 50 primary care clinics across three University of California health systems using a validated algorithm. If patients lacked documented ACP within the last 3 years, they were eligible for an intervention: (Arm 1) an advance directive (AD); (Arm 2) AD+PREPAREforYourCare.org; (Arm 3) AD+PREPARE+lay health navigator outreach. Triggered by an appointment, we mailed and sent interventions through automated electronic health record (EHR) messaging. We collaborated with patients/caregivers, clinicians, payors, and national/health system leader advisors. We are currently finalizing 24 months follow-up data. We used the Consolidated Framework for Implementation Research (CFIR) and Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) frameworks to track secular trends and implementation efforts. Required multisite, system-level activities: 1) obtaining leadership, legal/privacy, and EHR approvals; 2) standardizing ACP documentation; 3) providing clinician education; 3) validating an automated serious illness identification algorithm; 4) standardizing ACP messaging with input from over 100 key advisors; 5) monitoring secular trends (e.g., COVID); and 6) standardizing ACP workflows (e.g., scanned ADs). Of 8707 patients with serious illness, 6883 were eligible for an intervention. Across all arms, 99% received the mailed intervention, 78.3% had an active patient portal (64.2% opened intervention), and 90.5% of arm three patients (n=2243) received navigator outreach. Implementing a multisite health system-wide ACP program and pragmatic trial, with automated EHR-based cohort identification and intervention delivery, requires a high level of multidisciplinary key advisor engagement, standardization, and monitoring. These activities provide guidance for the implementation of other large-scale, population-based ACP efforts.

Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review.

Advance care planning (ACP) is a process that involves discussing a person's goals, values, and preferences; it is particularly important for persons living with dementia (PLWD) given that dementia is incurable and progressive. To ensure results that will impact real-world practices, ACP outcome measures must be psychometrically strong, meaningful to key partners, and pragmatic to collect. Therefore, we conducted a scoping review of outcome measures utilized in ACP randomized controlled clinical trials (RCTs) enrolling PLWD or their care partners and evaluated their pragmatic characteristics. We searched MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, and Web of Science for peer-reviewed ACP RCTs enrolling PLWD or their care partners from 2011 to 2021. We abstracted characteristics of primary and secondary outcome measures, including pragmatic characteristics using an adapted Psychometric and Pragmatic Evidence Rating Scale and ACP outcome domains using the standardized ACP Outcome Framework (i.e., process, action, healthcare, or quality of care). We included 21 ACP RCTs. Trials included 103 outcome measures (39 primary and 64 secondary), of which 11% measured process, 14% measured action, 49% measured healthcare, and 26% measured quality of care. Twenty-four (23%) outcome measures were highly pragmatic, the majority of which (67%) reflected healthcare outcome measures. Sixty-one (59%) outcomes were assessed as highly relevant to PLWD or their care partners. Only 20% (n = 21) of outcome measures were embedded into clinical practice. Most (62%) RCTs were conducted in nursing homes, and 33% were focused PLWD with advanced stage disease. In RCTs testing ACP interventions to support PLWD, only 23% of outcome measures were highly pragmatic, and most of these measured healthcare utilizations. Outcome assessments were rarely integrated into the EHR during routine clinical care. New outcome measures that address the lived experience of PLWD and their care partners plus have high pragmatic characteristics are needed for embedded pragmatic clinical trials.