Background: Given the many challenges of conducting research that addresses the palliative and end-of-life care needs of patients with serious illnesses, stakeholder engagement starting from the moment of study conceptualization and design is critical to ensure successful participant recruitment, data collection, intervention delivery, data analysis, and dissemination.

Methods: Guided by a conceptual model published by the Patient-Centered Outcomes Research Institute (PCORI) entitled, "Measuring What Matters for Advancing the Science and Practice of Engagement"14 and with the support of a PCORI Engagement Officer, representatives from 9 PCORI-funded study teams formed a working group to survey team members and review, outline, and describe key lessons learned and best practices for promoting stakeholder engagement in palliative care research.

Results: Almost all study teams engaged with patients/caregivers, clinicians, researchers, and health care system experts as stakeholder partners. About half the teams also included payers and training institutions as part of their stakeholder advisors as well as a range of content experts. Study teams relied on a variety of support structures and resources, and they employed 10 distinct methods for maintaining engagement. All engagement methods were generally considered to be effective by teams who used the method, though there was some variability in team-rated engagement quality of each method. Nine barriers to stakeholder engagement were identified across the 9 studies as well as 9 strategies (or facilitators) to overcome these barriers. We share examples of how stakeholder engagement impacted studies in all phases, including the preparatory phase, study initiation phase, execution phase, and data analysis/dissemination phase.

Conclusions: Teams utilized a variety of resources and support structures as well as capitalized on multiple engagement methods for fostering stakeholder engagement, resulting in a high level of collaboration and integration.

Over the past decade, the Patient-Centered Outcomes Research Institute (PCORI) funded multiple large-scale, comparative effectiveness clinical trials evaluating palliative care and advance care planning interventions. These are complex multicomponent interventions that need robust but flexible fidelity monitoring. Fidelity is necessary to maintain both internal and external validity within palliative care intervention research and to ultimately evaluate the real-world impact of high-quality interventions. Different trials not only took varying approaches to fidelity monitoring but also uncovered both unique and common challenges and facilitators. This article summarizes 8 of these trials and highlights approaches, adaptations, barriers, and facilitators for intervention fidelity monitoring. Identifying and delivering core elements while simultaneously allowing adaptations of noncore elements is a vital part of fidelity monitoring. Dissemination of such experiences can inform both future palliative care research as well as ongoing implementation of palliative care and advance care planning interventions across diverse clinical practices. Adoption of rigorous intervention fidelity methods is critical to advancing the science and reproducibility of palliative care interventions.

The Patient-Centered Outcomes Research Institute (PCORI) funded multiple large-scale comparative effectiveness clinical trials evaluating palliative care (PC) and advance care planning (ACP) healthcare delivery models. This article provides an overview of the most common barriers our investigative teams encountered while implementing these trials and the strategies we utilized to overcome these challenges, with particular attention to identifying research partners for multisite trials; addressing contracting and regulatory issues; creating a team governance structure; training and engaging study staff across sites; recruiting, consenting, and enrolling study participants; collecting PC and ACP data and study outcomes; and managing multisite collaborations. The goal of this article is to provide guidance on how to best plan for and conduct rigorous trials evaluating PC and ACP healthcare delivery interventions moving forward.

Aims: This study aims to explore the practice of advance care planning (ACP) among Chinese oncology nurses and identify challenges influencing care provision.

Design: A sequential explanatory mixed-method design was employed, comprising a quantitative phase to assess communication practices, followed by a qualitative phase to explore the challenges faced in ACP.

Methods: The study employed convenience sampling, including 532 oncology nurses from seven hospitals in northern China. Quantitative data were collected through a cross-sectional survey and the ACP communication index from December 2021 to January 2022. The qualitative phase consisted of 19 interviews conducted between May and July 2022, which were thematically analysed to elucidate the challenges in ACP practices.

Results: Quantitative findings revealed a low frequency of ACP communication among Chinese oncology nurses. Qualitative analysis identified four themes: lack of optimal timing, passive engagement of patients or families, reluctance of healthcare professionals and unsupported policies.

Conclusion: The study concluded that identified challenges compromise the effectiveness of ACP practices among Chinese oncology nurses. Inadequate communication, limited interdisciplinary collaboration and policy gaps contribute to nonstandardised ACP processes.

Implications for the profession and/or patient care: The findings underscore the need for targeted interventions to enhance nurses' communication skills, foster interdisciplinary collaboration and provide policy support. Such interventions are pivotal to optimising end-of-life care in oncology settings and facilitating the integration of ACP into routine nursing practices.

Reporting methods: This study adhered to the Mixed Methods Article Reporting Standards.

Patient or public contribution: No contributions from patients or the public were involved in this study.

Context: Prognostication challenges contribute to delays in advance care planning (ACP) for patients with cancer near the end of life (EOL).

Objectives: Examine a quality improvement mortality prediction algorithm intervention's impact on ACP documentation and EOL care.

Methods: We implemented a validated mortality risk prediction machine learning model for solid malignancy patients admitted from the emergency department (ED) to a dedicated solid malignancy unit at Duke University Hospital. Clinicians received an email when a patient was identified as high-risk. We compared ACP documentation and EOL care outcomes before and after the notification intervention. We excluded patients with intensive care unit (ICU) admission in the first 24 hours. Comparisons involve chi-square/Fisher's exact tests and Wilcoxon rank sum tests; comparisons stratified by physician specialty employ Cochran-Mantel-Haenszel tests.

Results: Pre-intervention and post-intervention cohorts comprised 88 and 77 patients, respectively. Most were White, non-Hispanic/Latino, and married. ACP conversations were documented for 2.3% of hospitalizations pre-intervention vs. 80.5% post-intervention (p<0.001), and if the attending physician notified was a palliative care specialist (4.1% vs. 84.6%) or oncologist (0% vs. 76.3%) (p<0.001). There were no differences between groups in length of stay (LOS), hospice referral, code status change, ICU admissions or LOS, 30-day readmissions, 30-day ED visits, and inpatient and 30-day deaths.

Conclusion: Identifying patients with cancer and high mortality risk via machine learning elicited a substantial increase in documented ACP conversations but did not impact EOL care. Our intervention showed promise in changing clinician behavior. Further integration of this model in clinical practice is ongoing.

Background: With the ageing of the population intensifying, the implementation of advance care planning (ACP) in nursing facilities is especially crucial.

Objective: This study aimed to search and synthesise qualitative studies exploring the perspectives of older people in nursing facilities about ACP discussions.

Methods: The researchers conducted searches of PubMed, Web of Science, Cochrane Library, CNKI, Wanfang, VIP and CBM between the time of inception and October 2023. The PICo model was used to build the inclusion and exclusion criteria. Following the inclusion and exclusion criteria, two researchers screened the literature, extracted data and then integrated the literature using the integrative synthesis.

Results: A total of 12 articles were included, 47 themes were extracted, and three research integrations were summarised: (1) understanding of ACP; (2) attitude towards ACP; and (3) influencing factors of participation in ACP.

Conclusion: This study offers guidance for the future development of ACP on the participation of older people in nursing facilities.

Implications for practice: It is necessary to strengthen the education of ACP-related knowledge in conjunction with the cultural characteristics of different countries, to provide interdisciplinary support for older people through professional teamwork and to promote the development and improvement of ACP-related practices.

This exploratory interview study investigated nursing staff members' perspectives on the fundamentals of end-of-life communication with older people as part of advance care planning in home care, nursing home, and hospital settings. Separate semi-structured interviews were conducted with 17 nursing staff members about their experiences, opinions, and preferences before, during, and after end-of-life conversations. Overall themes clustering the fundamentals include preconditions such as feeling comfortable talking about the end of life and creating space for open communication. Fundamentals related to the actual conversation-such as using senses and applying associative communication techniques (e.g., using understandable language), following conversation phases, and being aware of interprofessional collaboration-were also considered important. This study emphasizes the importance of moving along with the older person as well as connecting, adapting, and letting go of control over the conversation's outcome. Many fundamentals can be traced back to the basics of nursing and the humanity of conversation.

Introduction: Many veterans with serious illnesses, such as end-stage kidney disease requiring dialysis and advanced cancer requiring treatment infusions, must make complex decisions about their current and future medical care. Advance care planning (ACP) is a process where individuals identify, express, and communicate their personal values, life goals, and preferences for care. ACP may be feasible in chemotherapy infusion centers or chronic dialysis centers during patient treatment.

Materials and methods: We assessed the feasibility of a licensed vocational nurse (LVN) facilitator to help veterans review the PREPARE for Your Care program (www.prepareforyourcare.org) and complete an advance directive (AD) in an outpatient hemodialysis unit or a chemotherapy infusion center. PREPARE For Your Care is an evidence-based online program with written pamphlets and ADs that prepares patients to participate with clinicians in making medical decisions. We measured the time to complete a session and the level of assistance required from LVNs via LVN self-report. Self-reported ease-of-use, comfort, and helpfulness were assessed on a 10-point Likert scale from 1 (not at all) to 10 (very).

Results: Twenty-eight patients were enrolled (mean age ± SD: 67 ± 11 years); all (100%) completed PREPARE and the AD within 1 session. The mean completion time was 100 (±40) minutes. Most of the patients required considerable assistance from the LVN. The mean scores were 8.0 of 10 for ease-of-use (±2.3), 7.7 of 10 (±2.8) for comfort, and 8.2 of 10 (±2.3) for helpfulness.

Conclusions: This pilot study demonstrates that using PREPARE as an ACP tool for veterans may be feasible for patients during hemodialysis and chemotherapy infusion. Patients required considerable assistance from the LVN to complete PREPARE. Hemodialysis and chemotherapy infusion are opportunities when patients have time and space to consider ACP.

Cardiopulmonary resuscitation (CPR) outcomes vary for patients with cancer. Here, we characterized cancer patients who underwent CPR in the emergency department (ED), their outcomes, and the effects of advanced care planning (ACP). The hospital databases and electronic medical records of cancer patients at a comprehensive cancer center who underwent CPR in the ED from 6 March 2016 to 31 December 2022 were reviewed for patient characteristics, return of spontaneous circulation (ROSC), conversion to do-not-resuscitate (DNR) status afterward, hospital and intensive care unit (ICU) length of stay, mortality, cost of hospitalization, and prior GOC discussions. CPR occurred in 0.05% of all ED visits. Of the 100 included patients, 67 patients achieved ROSC, with 15% surviving to hospital discharge. The median survival was 26 h, and the 30-day mortality rate was 89%. Patients with and without prior ACP had no significant differences in demographics, metastatic involvement, achievement of ROSC, or in-hospital mortality, but patients with ACP were more likely to change their code status to DNR and had shorter stays in the ICU or hospital. In conclusion, few cancer patients undergo CPR in the ED. Whether this results from an increase in terminally ill patients choosing DNR status requires further study. ACP was associated with increased conversion to DNR after resuscitation and decreased hospital or ICU stays without an increase in overall mortality.

Importance: Concordance between physician orders for life-sustaining treatment (POLST) preferences and treatment at end-of-life is an important outcome measure of providing patient-centered care. Objectives: We determine whether the COVID pandemic affected clinician ability to provide goal concordant care and replicate our previous report on care concordance and change in patient preferences over time with a larger sample size. We also investigate the quality of POLST completion to determine the number of documents completed with an advance care planning (ACP) conversation or a decision maker present. Methods: Chart abstraction via structured questionnaire of 796 randomly selected patients who died in 2020 with a POLST on file. Results: We found 99% concordance in the last setting of death between a patient's POLST preferences and the care they received. We confirm our previous finding that patients' wishes shift towards a preference for lower treatment intensity at end-of-life. We found that 82% of POLSTs were created in the context of an ACP conversation, 77% with a decision maker present. Conclusion: High levels of goal concordant care were maintained during the pandemic. Because patient wishes evolve over time, clinicians should be trained and supported to revisit care preferences across the illness trajectory.

Background: Advance care planning has been advocated as a way for people to have their wishes recorded and respected in relation to types of treatment and place of care. However, uptake in England remains low.

Aims: To examine the views of older, well, adults towards Advance Care Plans (ACPs) and planning for end-of-life care, in order to inform national policy decisions.

Methods: A mixed methods approach was adopted, involving individual and mini-group qualitative interviews (n = 76, ages 45-85), followed by a quantitative survey (n = 2294, age 55+). The quantitative sample was based on quotas in age, gender, region, socio-economic grade, and ethnicity, combined with light weighting to ensure the findings were representative of England.

Results: Knowledge and understanding of advance care planning was low, with only 1% of survey respondents reporting they had completed an ACP for themselves. Common reasons for not putting wishes into writing were not wanting/needing to think about it now, the unpredictability of the future, trusting family/friends to make decisions, and financial resources limiting real choice.

Conclusion: Whilst advance care planning is seen as a good idea in theory by older, well, adults living in the community, there is considerable reticence in practice. This raises questions over the current, national policy position in England, on the importance of written ACPs. We propose that policy should instead focus on encouraging ongoing conversations between individuals and all those (potentially) involved in their care, about what is important to them, and on ensuring there are adequate resources in community networks and health and social care systems, to be responsive to changing needs.

Background: Older cancer patients are vulnerable to poorer health outcomes during cancer treatment. Although the Thai elderly had their own preferences towards future medical care and advance care planning (ACP) could help cancer patients make informed decisions, Thai physicians report a low ACP engagement rate. Thus, this study aimed to explore the perceptions of older cancer patients and their families towards ACP engagement.

Method: We used a qualitative approach to explore the perceptions of non-haematological cancer patients aged ≥ 60 years old and their primary caregivers. The study was conducted at the Oncology Radiotherapy Referral Center, Songklagarind Hospital in Southern Thailand. Semi-structured in-depth interviews were conducted with the patients and their caregivers. Thematic analysis was used to identify and analyze recurring patterns and themes of perceptions regarding ACP engagement within the interview transcripts.

Results: Among the 138 families approached, 32 interviews were conducted. Three themes were found: (1) Advantageous opportunity: the patients believed ACP would help them realize their life values, and ensure that their preference would be respected; (2) contemplation and barriers to ACP: ACP is unfamiliar and unnecessary, might have low utility, worry patients and family members, take away optimism, would not be a proper activity for the patient at the current health situation; and (3) Cues for ACP initiation: perceived conformity with one's religion, awareness of the current cancer state, having multiple comorbidity or experience suffering related with medical care, wishing not to burden family, having close family members, and trust in physicians.

Conclusion: ACP engagement could be hindered or promoted by perceptions of older patients and/ or their family members, as well as the communication skills of the care providers. Care professionals who aim to initiate ACP should minimize the potential barriers, make the ACP benefits salient, and watch for cues indicating a propitious time to start the ACP conversation.

Background: The viability of advance care planning (ACP) in cultures where discussing future desires is taboo is unclear, it is essential to examine the challenges faced by Chinese nurses lacking legal protection for ACP.

Aims: To comprehend Chinese oncology nurses' perceptions of serious illness conversation and ACP, and identify barriers to engagement.

Methods: A qualitative descriptive exploratory study involving semi-structured interviews with 13 experienced oncology nurses, analyzed using thematic analysis and critical incident technique, following the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines.

Findings: Four themes emerged: Inadequate Competence Causes Patient Harm, Cultural Influences to Patient Autonomy, Psychological Tolerance Neglects Best Interests, and Systemic and Legal Uncertainties Impact Patient Rights.

Conclusion: Policy changes supporting nurses in ACP implementation, a 'whole-system strategic approach' involving legislative changes, organizational support, and public awareness are crucial for optimizing ACP and meeting diverse patient needs.

Background: Palliative care aims to improve the quality of life for people with life-limiting illnesses. Advance care planning conversations that establish a patient's wishes and preferences for care are part of a person-centered approach. Internationally, electronic health record systems are digital interventions used to record and share patients' advance care plans across health care services and settings. They aim to provide tools that support electronic information sharing and care coordination. Within the United Kingdom, Electronic Palliative Care Coordination Systems (EPaCCS) are an example of this. Despite over a decade of policy promoting EPaCCS nationally, there has been limited implementation and consistently low levels of use by health professionals.

Objective: The aim of this study is to explore the factors that influence the implementation of EPaCCS into routine clinical practice across different care services and settings in 2 major regions of England.

Methods: A qualitative interview study design was used, guided by Normalization Process Theory (NPT). NPT explores factors affecting the implementation of complex interventions and consists of 4 primary components (coherence, cognitive participation, collective action, and reflexive monitoring). Health care and social care practitioners were purposively sampled based on their professional role and work setting. Individual web-based semistructured interviews were conducted. Data were analyzed using thematic framework analysis to explore issues which affected the implementation of EPaCCS across different settings at individual, team, organizational, and technical levels.

Results: Participants (N=52) representing a range of professional roles were recruited across 6 care settings (hospice, primary care, care home, hospital, ambulatory, and community). In total, 6 themes were developed which mapped onto the 4 primary components of NPT and represented the multilevel influences affecting implementation. At an individual level, these included (1) EPaCCS providing a clear and distinct way of working and (2) collective contributions and buy-in. At a team and organizational level, these included (3) embedding EPaCCS into everyday practice and (4) championing driving implementation. At a technical level, these included (5) electronic functionality, interoperability, and access. Breakdowns in implementation at different levels led to variations in (6) confidence and trust in EPaCCS in terms of record accuracy and availability of access.

Conclusions: EPaCCS implementation is influenced by individual, organizational, and technical factors. Key challenges include problems with access alongside inconsistent use and engagement across care settings. EPaCCS, in their current format as digital advance care planning systems are not consistently facilitating electronic information sharing and care coordination. A redesign of EPaCCS is likely to be necessary to determine configurations for their optimal implementation across different settings and locations. This includes supporting health care practitioners to document, access, use, and share information across multiple care settings. Lessons learned are relevant to other forms of digital advance care planning approaches being developed internationally.

BACKGROUND: For people with a moderate stage of Parkinson disease (PD), dedicated care coordination combined with advance care planning (ACP) is highly needed. However, evidence is lacking. The objective of this study was to assess the feasibility and acceptability of the study processes to inform a larger randomized controlled trial, aiming the effectiveness of a combined intervention on ACP and care coordination for people with PD. METHODS: Two nurse practitioners with expertise in PD followed training on a combined intervention on ACP and care coordination. Patients were invited to participate in several sessions for a period of 12 months. Feasibility of the study was surveyed covering sample recruitment, attrition rate, eligibility, intervention delivery, number of ACP sessions, type of intervention administration, and satisfaction with the intervention. RESULTS: In total, 27 patients were invited to participate, and 20 (74%) enrolled into the study, together with 11 family caregivers; 7 patients (35%) dropped out. Most patients were men (n = 20), with a mean age of 73.4 (SD 8.2) years. In total, 71 ACP sessions were held (3.6 sessions per patient on average), of which 41% of the sessions were conducted face-to-face at home, 44% at the hospital, 11% over telephone, and 4% via a videoconference call. Patients perceived the intervention not only as supportive but also as confronting. CONCLUSION: The ACP aspect of the intervention was useful and feasible to stimulate patients to think about their current care situation as well as about future care. Care coordination was less profoundly provided and discussed.

Objective: To measure compliance with Advance Care Directives (ACDs) for decedents in a rural setting.

Design: Observational, cross-sectional medical records audit comparing requests in ACDs with actual outcomes.

Setting: Rural Australian coastal district.

Participants: People who had an ACD, died during the study period (30 May 2020 to 15 December 2021) and participated in a local research project.

Main outcome measure(s): Compliance was measured by comparing stated requests in the ACD with outcomes recorded in medical records. This included the place of death and a list of 'unacceptable interventions'.

Results: Sixty-eight people met the inclusion criteria (age range of 46-92 [mean 67 years; median 74 years]; 42 [62%] male). The main cause of death was cancer (n = 48; 71%). Preferred place of death was not stated in 16 ACDs. Compliance with documented preferred place of death was 63% (33/52): 48% (16/33) when the preferred place of death was home; 78% (7/9) when sub-acute was preferred; and 100% (10/10) when hospital was preferred. Compliance was 100% with 'unacceptable interventions'.

Conclusion: These results demonstrate strong compliance with rural patients' requests in ACDs, particularly 'unacceptable interventions'. Home was the most common preferred place of death, but the compliance measure (48%) was the lowest in this study. This requires further exploration.

Background: Advance care planning (ACP) can contribute to individuals making decisions about their healthcare preferences in advance of serious illness. Up to now, the acceptance level and associated factors of ACP among the public in China remain unclear. This study aims to investigate the acceptance level of ACP in China and identify factors associated with it based on the socioecological model.

Methods: A total of 19,738 participants were included in this survey. We employed a random forest regression analysis to select factors derived from the socioecological model. Multivariate generalized linear model analysis was then conducted to explore the factors that were associated with the acceptance level of ACP.

Results: On a scale ranging from 0 to 100, the median score for acceptance level of ACP was 64.00 (IQR: 48.00-83.00) points. The results of the multivariate generalized linear model analysis revealed that participants who scored higher on measures of openness and neuroticism personality traits, as well as those who had greater perceptions of social support, higher levels of health literacy, better neighborly relationships, family health, and family social status, were more likely to accept ACP. Conversely, participants who reported higher levels of subjective well-being and greater family communication levels demonstrated a lower likelihood of accepting ACP.

Conclusions: This study identified multiple factors associated with the acceptance level of ACP. The findings offer valuable insights that can inform the design and implementation of targeted interventions aimed at facilitating a good death and may have significant implications for the formulation of end-of-life care policies and practices in other countries facing similar challenges.

Advance care planning is a process in which capable adults communicate their preferences for medical care in case of incapacitation. Regardless of health status, most adults are interested in advance care planning conversations and prefer providers to initiate these discussions. Primary care nurse practitioners are ideally positioned to lead these conversations but lack knowledge, confidence, and communication skills to do so. This project aimed to develop, implement, and evaluate an educational program for primary care nurse practitioners regarding leading advance care planning conversations with healthy adults. This evidence-based practice project used the Advance Care Planning Self-Efficacy Scale to measure primary care nurse practitioners' self-efficacy after completing a complex educational program. The educational program was developed based on a nationally recognized program incorporating didactic, observational, and role-play learning. The findings of this project indicated that providing complex education was an effective intervention immediately and after 3 months ( P = .018 and P = .023, respectively). The results indicate that educating nurse practitioners is an effective intervention for increasing their self-efficacy in leading advance care planning conversations with healthy adults over 3 months, recommending additional intervention at least earlier than 6 months.