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BACKGROUND: Goals of care conversations explore seriously ill patients values to guide medical decision making and often inform decisions about life sustaining treatments. Ideally, conversations occur before a health crisis between patients and clinicians in the outpatient setting. In the United States Veterans Affairs (VA) healthcare system, most conversations still occur in the inpatient setting. Strategies are needed to improve implementation of outpatient, primary care goals of care conversations. METHODS: We plan a cluster randomized (clinician-level) sequential, multiple assignment randomized trial to evaluate the effectiveness of patient implementation strategies on the outcome of goals of care conversation documentation when delivered in combination with clinician implementation strategies. Across three VA healthcare system sites, we will enroll primary care clinicians with low rates of goals of care conversations and their patients with serious medical illness in the top 10th percentile of risk of hospitalization or death. We will compare the effectiveness of sequences of implementation strategies and explore how patient and site factors modify implementation strategy effects. Finally, we will conduct a mixed-methods evaluation to understand implementation strategy success or failure. The design includes two key innovations: (1) strategies that target both clinicians and patients and (2) sequential strategies with increased intensity for non-responders. CONCLUSION: This study aims to determine the effect of different sequences and combinations of implementation strategies on primary care documentation of goals of care conversations. Study partners, including the VA National Center for Ethics in Health Care and Office of Primary Care, can consider policies based on study findings.

Advance care planning (ACP) has evolved from a narrow focus on end-of-life preference, such as resuscitation, to a continuum of care planning across the life course. Older adults with kidney disease have high morbidity and mortality, and easy-to-use tools can make ACP easier for patients and clinicians.

BackgroundEnd-of-life (EOL) care patterns may differ by physician age given differences in how physicians are trained or changes associated with aging. We sought to compare patterns of EOL care delivered to older Americans according to physician age.MethodsWe conducted a cross-sectional study of a 20% sample of Medicare fee-for-service beneficiaries aged ≥66 years who died in 2016-2019 (n = 487,293). We attributed beneficiaries to the physician who had >50% of primary care visits during the last 6 months of life. We compared beneficiary-level outcomes by physician age (

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

Advance care planning (ACP) has been recognized as crucial by patients, families, and clinicians; however, different definitions and measurements have led to inconsistencies in practice and mixed evidence in the literature. This narrative review explores ACPs evolution, innovations, and outcomes using thematic analysis to synthesize data from randomized controlled trials, reviews, and editorials. Key findings include (1) ACP has evolved over the past several decades from a sole focus on code status and advance directive (AD) forms to a continuum of care planning over the life course focused on tailored preparation for patients and surrogate decision-makers and (2) ACP measurement has evolved from traditional outcome metrics, such as AD completion, to a comprehensive outcomes framework that includes behavior change theory, systems, implementation science, and a focus on surrogate outcomes. Since the recent development of an ACP consensus definition and outcomes framework, high-quality trials have reported mainly positive outcomes for interventions, especially for surrogates, which aligns with the patient desire to relieve decision-making burden for loved ones. Additionally, measurement of clinically meaningful ACP information, including documented goals of care discussions, is increasingly being integrated into electronic health records (EHR), and emerging, real-time assessments and natural language processing are enhancing ACP evaluation. To make things easier for patients, families, and care teams, clinicians and researchers can use and disseminate these evolved definitions; provide patients validated, easy-to-use tools that prime patients for conversations and decrease health disparities; use easy-to-access clinician training and simple scripts for interdisciplinary team members; and document patients values and preferences in the medical record to capture clinically meaningful ACP so this information is available at the point of care. Future efforts should focus on efficient implementation, expanded reimbursement options, and seamless integration of EHR documentation to ensure ACPs continued evolution to better serve patients and their care partners.

A key challenge of implementing advance care planning lies in the fact that decisions made in advance require patients and their family members to imagine what their clinical picture will look like rather than knowing or experiencing the clinical circumstances as they unfold. Even more important is the acknowledgment of the unpredictability of a given clinical course. This type of situation requires adaptiveness and flexibility in decision-making that frequently occurs in the moment(s) triggered by changes in health state(s). We describe an alternative frameshifting approach called Adaptive Care Planning (AdaptCP), which features an evolving communication between physicians and patients/families with ongoing incorporation of the patients/familys perspective. This process continues iteratively until each decision can be reached in a way that is both harmonious with the patients/familys perspective and is consistent with medical treatment options that are actionable for the healthcare team. We include a table of tools drawn from the literature that can help clinicians when implementing AdaptCP.

INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the persons capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.

PURPOSE: 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. METHODS: 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. RESULTS: 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

COVID-19 may cause sudden serious illness, and relatives having to act on patients behalf, emphasizing the relevance of advance care planning (ACP). We explored how ACP was portrayed in newspapers during year one of the pandemic. In LexisNexis Uni, we identified English-language newspaper articles about ACP and COVID-19, published January-November 2020. We applied content analysis; unitizing, sampling, recording or coding, reducing, inferring, and narrating the data. We identified 131 articles, published in UK (n = 59), Canada (n = 32), US (n = 15), Australia (n = 14), Ireland (n = 6), and one each from Israel, Uganda, India, New-Zealand, and France. Forty articles (31%) included definitions of ACP. Most mentioned exploring (93%), discussing (71%), and recording (72%) treatment preferences; 28% described exploration of values/goals, 66% encouraged engaging in ACP. No false or sensationalist information about ACP was provided. ACP was often not fully described. Public campaigns about ACP might improve the full picture of ACP to the public.

Objectives: To explore whether training on the SICG-Peds© (Serious Illness Guide for Pediatrics) impacts a pediatric clinician's confidence and knowledge in participating and initiating/leading difficult conversations with families of children living with a serious illness. Methods: Over 2 years, clinicians from BC and Ontario who care for children with serious illnesses attended training workshops on the SICG-Peds©. These workshops were evaluated using pre- and post-workshop questionnaires. Participants reported confidence scores on a scale of 1 to 10. Results: In total, 134 and 140 clinicians attended the workshops in BC and Ontario, respectively. The majority of clinicians who completed the immediate post-workshop survey (N = 223, 94.5%), responded that the content enhanced their knowledge about pediatric serious illness conversations (SIC). Confidence scores in initiating/leading a SIC significantly increased from median 5 (interquartile range [IQR] 3-7) pre-workshop to 7 (IQR 7-9) immediately post-workshop (P <.0001). Confidence scores in participating as a non-leader in a SIC also significantly increased from median 7 (IQR 6-9) pre-workshop to median 8 (IQR 7-9) immediately post-workshop (P <.0001). Conclusions: Overall, these workshops significantly improved participants' confidence. Effectiveness and knowledge enhancement were other areas where the majority of participants reported positive improvements. Areas for continued support were identified as more mentoring, and training for supporting the guide's use in a clinical setting. [ABSTRACT FROM AUTHOR]

ABSTRACT Background Aims Design Methods Results Conclusion Implications for the Profession and Patient Care Impact Reporting Methods Patient or Public Contribution Advance care planning (ACP) enables individuals with life‐limiting illnesses to make decisions regarding future healthcare. It involves patients, families and healthcare providers in discussions on treatment preferences and end‐of‐life care. Understanding their experiences is key to improving ACP practice.To systematically review and analyse the experiences of patients, families and healthcare providers with ACP for life‐limiting illnesses.This study employed a mixed‐methods systematic review (MMSR) with a convergent integrated approach.Literature searches were conducted using CINAHL, Cochrane Library, ERIC, MEDLINE, Scopus and Web of Science, as well as hand searches and reference list checking, for articles published between 2010 and August 2024. Two independent reviewers extracted and analysed the data using the JBI guidelines for MMSR.Of the 1405 citations, 26 studies involving 1599 participants (1076 patients, 398 healthcare providers and 125 family members) were included. The main findings highlight the importance of patient empowerment, family involvement and the integration of ACP into routine care. Eliminating barriers, such as lack of training, resource limitations and challenges with timing discussions, are essential for effective ACP implementation.The MMSR emphasises the need for patient‐centred ACP that actively involves families and addresses systemic barriers. Early initiation, tailored emotional support and equitable care across conditions are crucial for an effective ACP.The MMSR highlights the importance of family involvement and enhanced training for healthcare providers in ACP, emphasising the need for emotional support and systemic changes to improve patient care. These improvements should include better educational programs and policies to ensure early, effective and equitable ACP discussions among various patient groups.The MMSR underscores the need for structured ACP practices that are currently limited by insufficient training and vague guidelines. Early initiation of ACP discussions and inclusion of patient and family preferences are essential for improving care for individuals with life‐limiting conditions. These findings are vital for healthcare providers, policymakers and educators to implement more effective patient‐centred ACP approaches. Family involvement remains a key aspect, with the review advocating for a support system that empowers families to play an active role in ACP.Preferred Reporting Items for Systematic Review and Meta‐Analyses (PRISMA).No Patient or Public Contribution. [ABSTRACT FROM AUTHOR]

Background: Demographic changes are leading to a rise in the demand for care services, with nursing homes (NHs) playing an increasingly important role in end-of-life care. Evidence suggests that NH residents at the end of life significantly benefit from hospice and palliative care and the implementation of advance care planning (ACP). In 2018, Germany passed a law to promote the implementation of ACP in NHs and to enable the refinancing of ACP services by the statutory health insurance funds. The present study aimed at assessing current hospice and palliative care structures, examining the implementation of ACP and identifying barriers to obtain approval for billing for ACP services under this specific legislative (§ 132 g SGB V). Methods: As a part of the "Gut-Leben" project, the present study administered a cross-sectional quantitative survey in 2023 to evaluate hospice and palliative care structures, the implementation of ACP, and barriers to ACP approval in German NHs. A questionnaire was distributed to a random sample of N = 1,369 NH managers. Responses were analyzed using descriptive statistical methods. Results: N = 330 NH managers responded to the questionnaire (24.1% response). The majority described the end-of-life care structures in their region as rather good (77.7; n = 256), and very strong collaboration was reported with general practitioners (54.7%), physiotherapists (42.9%), and palliative care physicians (38.6%). Awareness of the legislative for ACP was reported by n = 201 NHs (64.4%), and 100 (50.3%) of these NHs had already obtained approval. The primary barriers to approval identified by 68 NHs included a lack of available staff (48.5%; n = 33) and a small facility size (27.9%; n = 19). Conclusions: Although half of the NHs have implemented ACP, there is still a need to enhance awareness of the ACP legislative. These efforts should aim to reduce the existing barriers to approval, which could be achieved, for instance, by fostering collaboration between NHs or by cooperating with external ACP service providers. [ABSTRACT FROM AUTHOR]

Background: Early palliative care interventions in oncology, as recommended by international oncology societies, promote patient understanding and support decision-making. At the same time, shared decision-making models are being developed to enhance patient participation as part of a new model of patient-physician relationship. For patients with palliative needs, this participation is essential and helps to avoid futile and aggressive treatments at the end of life. The aim of this study is to observe decision making during meetings between oncology and palliative care professionals, focusing particularly on the components of shared decision-making models, but also on the role played by palliative care professionals. Methods: We conducted a non-participant observation of multidisciplinary meetings and outpatient clinic activities in two Comprehensive Cancer Centres in France. Field notes were then coded using thematic content analysis. Deductive analysis was conducted using the observation grid developed from Elwyn's three-talk model. Results: Only a few elements of the different models of shared decision-making are apparent in the multidisciplinary meetings. Palliative care professionals emphasise the importance of involving patients and providing them with information about the advantages and disadvantages of different treatment options. However, patient involvement in decision-making remains difficult in daily practice. Decisions to discontinue oncological treatment are often driven by clinical and biological signs of terminal evolution rather than shared decision-making. Conclusions: There are still cultural and organisational barriers to actual implementation of early integrated onco-palliative care. Promotion of shared decision making can be a strong lever of change which is frequently mobilised by palliative care teams. [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) in palliative care is essential for patient autonomy and quality of dying. This review explores ACP practices in South Korea, Japan, and Taiwan, highlighting how legislation and cultural values shape those practices. In these three sectors, which are influenced by Confucian values, family involvement plays a significant role in decision-making. In South Korea, the Life-Sustaining Treatment Decisions Act made ACP processes mandatory at all healthcare institutions and rapidly created advance directive registration agencies nationwide, with a national web-based system for legal documentation. The Act's narrow focus on terminal illness and dying phase may inadvertently delay end-of-life discussions. A broader social consensus is needed to allocate end-of-life care resources in a way that reflects patients' and families' wishes. Japan's family-based approach highlights relational autonomy, with ACP timing varying and no formal legal frameworks for advance directives. Expanded palliative care, ACP guidelines, systemic support, and public awareness drive progress in Japan. Taiwan's two relevant legislative frameworks-the Hospice Palliative Care Act and Patient Right to Autonomy Act-expand palliative care services for terminal illnesses and non-cancer diseases such as severe dementia, irreversible coma, and a persistent vegetative state. Misunderstandings of ACP and family-led decision-making may hinder ACP uptake. ACP referral based on patient care needs rather than terminal diagnoses is suggested. Overcoming common barriers in Asia necessitates open dialogues about death and public education. A standardized legal framework and comprehensive training for healthcare providers are equally important. Further international collaboration will suggest culturally sensitive ACP conversations across Asia. [ABSTRACT FROM AUTHOR]

Background: Elderly population is increasing in high‐income countries. For instance, by 2050, 21.4% of the United States population is expected to be 65+, thus making advance care planning (ACP) increasingly important. We aim to identify predictors of ACP completion in 11 high‐income countries and explore relationships between ACP and utilization factors. Method: Using the 2021 International Health Policy (IHP) survey data, we assessed the relationship between sociodemographic factors, healthcare utilization, and ACP. The primary outcome variable was a composite of three ACP activities. A generalized linear mixed model (GLMM) was used to identify predictors of ACP completion. Results: Analyses included 18,677 older adults who answered at least one ACP question. Only 5126 (27.4%) reported completion of three ACP activities. Germany (64.7%) showed the highest completion rates, while Sweden (5.0%) and France (5.0%) showed the lowest completion rates. Predictors of ACP completion identified in the GLMM were: increasing age (incidence rate ratio [IRR] range between 1.2 and 1.5), completion of high school education or more (IRR: 1.1, 95% CI: 1.1–1.1), higher income (IRR: 1.1, 95% CI: 1.1–1.2), presence of two or more health conditions (IRR: 1.1, 95% CI: 1.0–1.1), hospital stay in the past 2 years (IRR: 1.1, 95% CI: 1.1–1.1), and access to quality primary care (IRR: 1.0, 95% CI: 1.0–1.1). Male gender (IRR: 0.9, 95% CI: 0.8–0.9) had a negative association with ACP activity completion. Conclusion: Several patient‐specific and health system utilization factors were identified as predictors of ACP activity completion, which clinicians and policymakers could use to enhance ACP completion. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) has been reconceptualized as a health behavior. Action plans (APs), or patient‐directed mini contracts, improve behavior change. However, no prior studies have assessed whether APs can increase ACP documentation and engagement. Methods: We included English and Spanish‐speaking primary care patients from San Francisco, ≥55 years of age, with ≥2 serious or chronic illnesses. Participants were in the intervention arm of the PREPAREforYOURcare.org trial and asked at baseline to choose 1 of 5 actions (e.g., choose a surrogate). At 6 months, we assessed whether participants completed their AP and if completion was associated with demographics, electronic health record (EHR) ACP documentation, and five‐point ACP Engagement Survey scores. We used t‐tests, chi‐squared, multivariate analysis adjusted for baseline ACP and clustering by physician, and qualitative thematic analysis to explore reasons for non‐completion. Results: The mean age of 586 participants was 65 ± 10 years; 44.0% women, 45.9% Spanish‐speaking, 31.4% had limited health literacy, and 43% completed an AP at 6 months; surrogate‐related (47.4%), tell others about medical wishes (33.7%), ask clinicians questions (13.7%), and decide what matters most in life (5.2%). Participants with limited versus adequate health literacy were less likely to complete an AP (25.4% vs 35.9%, p = 0.01). Completing an AP was associated with greater ACP EMR documentation 49.8% vs 35.6%, p < 0.001 (adjusted odds ratio: 2.06; 95% CI [1.43–2.97]) and engagement (adjusted five‐point scores [3.69; 95% CI 3.57–3.81 vs 3.10; 95% CI: 2.98–3.21], p < 0.001). Themes for non‐completion included not being ready and logistical issues (e.g., surrogate deceased). Conclusions: Among English and Spanish‐speaking older adults, creating an ACP AP resulted in greater documentation and engagement. APs may help facilitate ACP behavior change as part of effective ACP interventions. Additional support may be needed for patients with limited health literacy and those facing logistical barriers. [ABSTRACT FROM AUTHOR]

We aimed to measure the sustainability of health professionals' intention to have serious illness conversations with patients using the Serious Illness Conversation Guide (SICG) after individual-focused training versus team-based training. In a cluster randomised trial, we trained healthcare professionals in 40 primary care clinics and measured their intention to hold serious illness conversations immediately (T1), after 1 year (T2) and after 2 years (T3). Primary care clinics (n = 40) were randomly assigned to individual-focused training (comparator) or team-based training (intervention). Average age of the 373 participants was 35–44 years, 79% were women. On a scale of 1 to 7, at T1, the mean intention was 5.33 (SD 0.20) in the individual-focused group and 5.36 (SD 0.18) in the team-based group; at T2, these scores were 4.94 (SD 0.23) and 4.87 (SD 0.21) and at T3, 5.14 (SD 0.24) and 4.59 (SD 0.21), respectively. At T3, the difference in mean intention between study groups had a significant p-value of 0.01. Intention to have serious illness conversations was lower at T2 and T3 after team-based training than after individual-focused training, with a significant difference at 2 years in favour of individual-focused training. Health professionals reported not enough time during consultations for serious illness conversations as a major barrier. Registration number: ClinicalTrials.gov (ID NCT03577002) for the parent clinical trial. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities have traditionally been excluded from Advance Care (AC) planning. This study aimed to improve access to and the quality of AC planning for this community. Method: A Participatory Action Research study was led, and participated in, by co-researchers with intellectual disabilities and disability service managers. A new approach to AC planning was trialled and evaluated. Results: The new approach aided the initiation and development of comprehensive AC plans with people with intellectual disabilities. The completed plans were approved by health professionals. Contributing factors related to getting started, the materials, and the process. Conclusion: The emergent framework, developed in response to the findings, provides a potential pathway for implementation and further exploration of AC planning. [ABSTRACT FROM AUTHOR]

Background: Access to timely, age-appropriate palliative care services and end-of-life communication are two standards of care for adolescents and young adults (AYAs) living with cancer where cure is uncertain or unlikely. Health professionals' capacity to facilitate these standards is critical. This study aimed to understand AYA oncology health professionals' experienced practices in, and barriers to, delivering these standards of care across palliative care and end-of-life communication in Australia, New Zealand, and the United Kingdom (UK). Procedure: We invited health professionals to complete a survey examining access, barriers to, and practices around these standards of care. Tailored to local settings, our survey assessed current delivery of palliative care and end-of-life communication services (including advance care planning [ACP]) and barriers to implementation of these. Results: In total, 148 interdisciplinary health professionals participated (89% female overall; 83% female in Australia, 88% female in New Zealand, and 98% female in the UK). Across countries, participants reported that most institutions had an AYA cancer program (74% overall). Introduction to palliative care services was most often prognosis dependent or "not at any uniform time." ACP was less frequently introduced than palliative care. The most endorsed barrier to palliative care team introduction, as well as ACP, was "some team members not knowing how to introduce the topic." Conclusions: Our results indicate that there are common barriers to AYAs receiving palliative care, end-of-life communication, and ACP. Given that health professionals' confidence in this area can enable facilitation of early, age-appropriate communication, resources and training are urgently needed to bridge these practice gaps. [ABSTRACT FROM AUTHOR]

Background: Digital advance care planning systems are used internationally to document and share patients' wishes and preferences to inform care delivery. However, their use is impeded by a limited understanding of factors influencing implementation and evaluation. Aim: To develop mid-range programme theory to account for technological, infrastructure and human factor influences on digital advance care planning systems. Design: Exploratory qualitative research design incorporating Theory of Change workshops that explored contextual assumptions affecting digital advance care planning in practice. A mid-range programme theory was developed through thematic framework analysis using the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework, generating a conceptual model depicting contextual assumptions, interventions and outcomes influencing implementation. Participants: A total of 38 participants (16 from London, 14 from West Yorkshire and 8 online) including patients, carers and health and care professionals (including those with commissioning responsibilities). Results: A conceptual model was generated depicting five distinct components relating to digital advance care planning system use: (sociocultural, technical and structural prerequisites; recognition of the clinical need for conversation; having conversations and documenting decisions; accessing, actioning and amending; and using data to support evaluation, use and implementation). There were differences and uncertainty relating to what digital advance care planning systems are, who they are for and how they should be evaluated. Conclusions: Digital advance care planning lacks shared beliefs and practices, despite these being essential for complex technology implementation. Our mid-range programme theory can guide their further development and application by considering technological, infrastructure and human factor influences to optimise their implementation. [ABSTRACT FROM AUTHOR]

Background: Advance care planning initiatives are becoming more widespread, increasing expectations for providers to engage in goals of care conversations. However, less is known about how providers communicate advance care planning within and throughout a health care system. Aim: To explore perspectives of communication processes in the rollout of an advance care planning initiative. Design: Theoretically informed secondary analysis of 31 semi-structured interviews. Setting/Participants: Key partners in a Veterans Health Administration goals of care initiative. Results: Using the constant comparative approach followed by qualitative mapping of themes to the layers of the Socio-Ecological Model, four themes and corresponding Socio-Ecological layers were identified: Goals of Care Communication Training (Policy, Community, and Institutional) requires more resources across sites and better messaging to reduce provider misconceptions and promote an institutional culture invested in advance care planning; Interprofessional Communication (Interpersonal) suggests care team coordination is needed to facilitate continuity in goals of care messaging; Communication in Documentation (Institutional, Interpersonal, and Intrapersonal) highlights the need for capturing the context for goals of care preferences; and Patient/Family Communication (Interpersonal and Intrapersonal) encourages offering materials and informational resources early to facilitate rapport building and readiness to determine goals of care. Conclusions: Findings support the need for initiatives to incorporate an evaluation of how goals of care are discussed beyond the interpersonal exchange between patient and provider and signal opportunities for applying the Socio-Ecological Model to better understand goals of care communication processes, including opportunities to improve initiation and documentation of goals of care. [ABSTRACT FROM AUTHOR]

Prognostication challenges contribute to delays in advance care planning (ACP) for patients with cancer near the end of life (EOL). Examine a quality improvement mortality prediction algorithm intervention's impact on ACP documentation and EOL care. 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 involved chi-square/Fisher's exact tests and Wilcoxon rank sum tests; comparisons stratified by physician specialty employ Cochran-Mantel-Haenszel tests. Preintervention and postintervention cohorts comprised 88 and 77 patients, respectively. Most were White, non-Hispanic/Latino, and married. ACP conversations were documented for 2.3% of hospitalizations preintervention vs. 80.5% postintervention (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. 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. [ABSTRACT FROM AUTHOR]

Cultural adaptation is essential for optimizing programs centered around autonomy, such as the Serious Illness Care Program (SICP), especially for populations valuing family-involved decision-making. We aimed to evaluate the feasibility and efficacy of a culturally adapted SICP-based nurse-physician collaborative Advance Care Planning (ACP) intervention tailored for patients with advanced cancer who prefer family-involved decision-making. Oncology nurses, extensively trained and closely collaborating with physicians, conducted structured discussions with patients in the intervention group. The culturally adapted SICP-based ACP intervention was supplemented with trust-building, family involvement, and understanding of patient values. Primary inclusion criteria included patients within six weeks of initiating first-line palliative chemotherapy. Primary endpoints were achieving a 70% completion rate and assessing spiritual well-being (FACIT-Sp) at six months. Secondary endpoints included anxiety (GAD-7), depression (PHQ-9), quality of life (QOL) (CoQoLo), and ACP progress (ACP Engagement Scale) at the same interval. Forty-one patients (67.2%) completed the six-month follow-up, falling short of the targeted completion rate. The least-squares mean change from baseline in spiritual well-being at six months was 3.00 in the intervention group and -2.22 in the standard care group (difference, 5.22 points; 95% confidence interval, 1.38-9.06; P = 0.009). Similar superiority of the intervention was observed in QOL and ACP progress. Despite not meeting the targeted completion rate, the intervention group demonstrated enhanced spiritual well-being, QOL, and ACP progress. Our findings suggest revisions to the intervention manual to improve feasibility and to progress to an efficacy-focused randomized controlled trial. [ABSTRACT FROM AUTHOR]

Background: Patients with dementia (PwD) nearing end of life (nEOL) do not always receive optimal end-of-life care, including timely specialist palliative care input. In hospitalized PwD likely to be nEOL, we aimed to determine the prevalence of goals of care discussions; the incidence and timing of referral to palliative care; factors associated with palliative care referral and timely (within 2 days) palliative care referral; and the prevalence of polypharmacy (>5 medications) and in-hospital deprescribing (cessation). Methods: A retrospective chart review of a cohort of PwD admitted under geriatric medicine 1 July 2021–30 June 2022 was conducted, screening to identify nEOL status. Results: A total of 298 patients (mean age of 83.5 [SD 7.4] and 51.3% females) were included in the final analysis. Eleven percent of eligible patients (33/298) died during admission. Overall, 80.9% had discussed an advance care plan (ACP). The mean time from admission to the discussion of an ACP was 1 day (SD = 5.02). One in twenty (5.4%) had their goals of care revised during admission, with 15 transitioning to palliation. Only 7.1% were referred to palliative care during admission. The mean time to referral was 9.8 days (SD 7.3; range 0–26). One in fourteen (7.4%) were discharged from hospital on an end-of-life pathway. In multivariable analysis, both the clinical frailty score (CFS) (aOR per unit increase 3.66; 95%CI 1.65–8.09, p = 0.001) and meeting ≥ 2 deterioration criteria (per CriSTAL tool) (OR 3.68; 95% CI 1.07–12.70, p = 0.039) were independently associated with referral to palliative care. Polypharmacy was common at admission (76.2%), with a mean number of medications of 8.4 (SD = 4). The median number of medications ceased during admission was two (IQR 0–4). Conclusions: Contrary to our hypothesis, we found a high quality of care of PwD likely nEOL, reflected by frequent ACPs in hospital, but it fell short of palliative care specialist input. Polypharmacy on admission and discharge may be further improved by aligning medication use with goals of care among PwD approaching the end of life, and considering the hospital nurse-driven identification of practice gaps is encouraged. [ABSTRACT FROM AUTHOR]

Caring for unrepresented patients encompasses legal, ethical, and moral challenges regarding decision-making, consent, the patient's values, wishes, best interest, and the healthcare team's professional integrity and autonomy. In this article, I consider the impact of the aging population and the effects of the social determinants of health and suggest that without preventive intervention, the number of unrepresented patients will continue to increase. The health, social, and legal risk factors for becoming unrepresented require a multidisciplinary response. Medical-Legal Partnerships (MLPs) bring healthcare and legal professionals together to address risk factors and health-harming legal needs. The article discusses the role of MLPs in identifying at-risk individuals, providing preventive interventions, and providing support. I make recommendations and conclude that proactive MLPs offer a sustainable approach to the ethical challenges in caring for unrepresented patients by providing interventions to prevent individuals from becoming unrepresented. [ABSTRACT FROM AUTHOR]

Especially older adults are increasingly stimulated to think about, talk about and record their preferences with regard to future (health)care decisions, preferably in a pro-active manner. In this paper, I analyse these anticipatory choice processes. My goal is twofold: Firstly, to provide a deeper understanding of what it actually means to decide in advance about end-of-life treatments or options. Secondly, to make a theoretical contribution to bioethics and ACP-theories by rethinking the concept of end-of-life choices from a phenomenological viewpoint. To achieve this, I start by presenting a case narrative that elucidates how these anticipatory choices are lived. Secondly, I map out a theoretical framework about choice based on the phenomenology of the will of Paul Ricoeur. Finally, guided by this Ricoeurian framework, I investigate the potential meaning of choice in the context of contemporary advance care planning trajectories. The analysis demonstrates that choice and agency always imply notions of passivity and uncontrollability. It also indicates the significant value of hesitation and ambivalence. Moreover, it highlights the importance of the notion of co-responsibility in the context of anticipated end-of-life choices, and the relevant distinction between a (willed) choice and a wish. To improve care and support regarding end-of-life trajectories and to promote meaningful conversations, it is imperative to integrate these underrated elements more substantially in our theories, language and practical approaches. I conclude by suggesting that, in order to do justice to the real-life complexities, we might even need to revise the notion of advance 'directives'. [ABSTRACT FROM AUTHOR]

IntroductionMethodsResultsDiscussionAdvance care planning (ACP) aims at empowering patients with chronic progressive disease to express and communicate their preferences for future care, but is not yet consistently applied in general practice. We explored GP residents’ experiences with practicing ACP conversations through virtual simulation and its educational value.Our study with Dutch GP residents in their first year of training used a hermeneutic phenomenological approach. Eleven participants were observed while engaging in virtual simulation, followed by an in-depth interview. Data was analysed in an iterative manner, starting from the first interview.Although the virtual simulation was mostly experienced as not realistic because it lacked the possibility of nuanced wording and personal adjustments, the GP residents did find it valuable to learn what topics can be addressed and how. The learning experience was primarily shaped by GP residents’ prior real-life ACP experiences.Virtual simulation is a valuable part of a blended curriculum, facilitating residents to get started with or refresh the basic knowledge and skills of ACP. It is crucial that virtual simulation is followed by critical reflection with peers and supervising GPs and practice with actors or real patients to ensure GP residents can further develop their skills regarding ACP conversations. [ABSTRACT FROM AUTHOR]

Background: In paediatric palliative care, children with life-threatening and life-limiting conditions, their families, and their health care professionals often face difficult decisions about treatment, goals of care, and delivery of care. Advance care planning and shared decision-making are strategies that can improve quality of care by discussing goals and preferences on future care. In this paper, we provide recommendations that aim to optimise advance care planning and shared decision-making in paediatric palliative care in the Netherlands. Methods: A multidisciplinary guideline panel of 20 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on advance care planning and shared decision-making. We performed systematic literature searches to identify quantitative and qualitative evidence and used the GRADE (CERQual) methodology for appraisal of evidence. Recommendations were formulated based on quantitative and qualitative evidence, clinical expertise, and patient and family experiences. Results: We identified 4 RCTs that reported on the effect of advance care planning interventions in paediatric palliative care and 33 qualitative studies on barriers and facilitators to advance care planning and shared decision-making. We formulated 28 strong recommendations in close collaboration with a multidisciplinary guideline panel that provide guidance to offer advance care planning and shared decision-making, involve children and their family, and communicate information about care and treatment. Conclusion: The identified evidence and recommendations support the use of advance care planning and shared decision-making in paediatric palliative care. However, we found several knowledge gaps that should be addressed. As advance care planning and shared decision-making require specific skills and can be time-consuming, we emphasise the importance of education, adequate staffing and sufficient funding to improve integration in clinical practice. We do believe that our recommendations can be used as a starting point to develop recommendations in other countries. However, country-specific factors should be very carefully considered before applying any recommendations in other countries. [ABSTRACT FROM AUTHOR]

Background: Black/African American women with breast cancer have a disproportionately higher risk of mortality compared to other race groups, although their overall incidence of disease is lower. Despite this, advance care planning (ACP) and consequent code status documentation remain low in this vulnerable patient population. Code status orders (i.e., Full code, Do Not Attempt Resuscitation [DNAR], Do Not Intubate [DNI]) allow consideration of patient preferences regarding the use of aggressive treatments, such as cardiopulmonary resuscitation and intubation. The aim of this study is to characterize presence of code status orders and determine whether race affects code status documentation after the first encounter for breast cancer. Methods: Data were derived from 7524 women with breast cancer from the University of Chicago Medical Center (UCMC) between 2016 and 2021. Cox regression was used to estimate the effects of race and adjusted for age, ethnicity, inpatient stays, metastatic breast cancer, marital status, and body mass index. Results: The sample included 60.5% White, 3.6% Asian/Mideast Indian, 28.9% Black/African American, and 7.0% other or unknown race. Results indicate that code status orders after the first breast cancer encounter were uncommon (7.2%). Black/African American race (HR = 2.74; 95% CI: 1.75, 4.28) emerged as a significant factor associated with any code status orders compared to other race groups even when adjusting for covariates. Conclusions: Code status documentation in this sample of women with breast cancer was low overall, yet rates were higher among Black/African American patients compared to other race groups. In fact, race remains a significant predictor of code status documentation even when accounting for indirect measures of cancer severity. This could be denoting the racial disparities (e.g., higher cancer malignancy such as triple negative breast cancer) in breast cancer mortality risk. Future research is needed to identify factors unique to Black/African American women that would increase code status documentation so that goal concordant care can be prioritized among patients with breast cancer. [ABSTRACT FROM AUTHOR]

Background: Palliative care must be tailored for patients with extended disease trajectories, such as those with hormone receptor-positive, Human Epidermal Growth Factor Receptor 2 (HER2)-negative advanced breast cancer (ABC), including the appropriate timing of discontinuing treatment. This study aimed to assess the interval between the last oncologist visit and death and the application of systemic treatment near the end of life in this patient population. Methods: This retrospective study included patients with luminal ABC who received at least two lines of palliative systemic treatment at the National Research Institute of Oncology in Poland, and died between November 2020 and March 2024. Results: Seventy-six women, with a median age 62.8 years (range: 35.3–91.5), were included. The median number of prior palliative systemic treatment lines was three (range: 2–6). At their last recorded oncologist visit, 75% of the patients were receiving active treatment (53% with hormonal therapy and 22% with chemotherapy). Only 25% were under continuous palliative care at this visit. Treatment was administered within the last month of life to 53% of the patients. The median duration from the last oncologist visit to death was 23 days (range: 0–408). The duration of this time interval was only associated with the performance status at the last visit (p < 0.05). Conclusions: Oncologists frequently delay the recognition of the need to discontinue systemic therapy. Patients with luminal HER2-negative ABC may be offered numerous effective lines of systemic treatment, complicating this decision further. Implementing clearer guidelines for end-of-life care for this group and providing proper training for healthcare providers is essential. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is a well-recognized quality indicator for palliative care. Despite two decades of effort, previous studies showed that ACP-related documentation and end-of-life discussion rates remain low for palliative care patients. Although ACP is about self-determination and autonomy, studies consistently show the importance of family involvement in adult patient's medical decision-making. Yet, research on ACP interventions with structured components targeting family member remained limited. The current study aims to evaluate the effectiveness of a structured, family-supported, patient-centred ACP programme for adult palliative care patients and their families. Methods: This is a 2-arm parallel group randomized controlled trial with follow-ups at 6 and 12 months. One hundred and seventy eligible palliative care patients and their families are planned to be recruited from three hospitals, and randomized to either a structured, family-supported, patient-centred ACP programme (ACP-Family) or usual ACP care (ACP-UC) arm. The ACP-Family intervention consists of 2 sessions. The primary outcome is family's prediction accuracy of patient's treatment preferences at 6 months. Secondary outcomes include proportions of new ACP documentations and family-reported perception of whether the patient's end-of-life (EOL) care preference was respected; patient's decisional conflict; quality of communication; family's decision-making confidence; family's anxiety and depression; and patients' and family members' satisfaction of the intervention. Outcomes of the two groups will be compared using regressions and linear mixed-effects models. Discussion: This study will provide rigorous scientific evidence on the effectiveness of a structured and well-design family-supported, patient-centred ACP programme for adult palliative care patients and their family members in the hospital setting. If the ACP-Family proves to be effective, it will provide a structured and systematic approach to facilitate ACP discussions involving family members. This will respond to local needs and inform international ACP practice. Trial registration: ClinicalTrials.gov Identifier: NCT05935540. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is pivotal in mitigating end-of-life suffering and ensuring healthcare congruence with the values of older adults and dignity in death. Despite its paramount importance, the current readiness for ACP among community-dwelling older adults and the intricate influencing factors have yet to be explored. Objective: To review the literature focusing on ACP readiness among community-dwelling older adults and the influencing factors. Methods: A scoping review conducted using the Arksey and O'Malley (2005) framework. Electronic databases (PubMed, CINAHL, Cochrane, Web of Science, PsycINFO), as well as grey literature databases (OpenGrey and GreyLit.org) were searched to identify studies published in English between January 2012 and March 2023. Results: 19 studies were selected, comprising 3 qualitative, 13 quantitative, 2 mixed-methods, and 1 review article. The study evaluated the readiness of older adults for ACP by examining their knowledge and attitudes. It categorizes influencing factors into intrinsic and extrinsic levels. This review revealed that the knowledge about ACP among older adults across all settings was limited. However, they had positive attitudes toward it. In addition, intrinsic factors including sociodemographic characteristics, psychological factors, and family relationships, along with extrinsic factors including health care professionals' attitudes and experience, as well as policies and laws, influenced the ACP readiness among older adults. Conclusions: This study established the groundwork for future ACP intervention trials, providing a theoretical framework to guide their design and implementation. operationalization. [ABSTRACT FROM AUTHOR]

Introduction: Advance care planning (ACP) ensures that patients receive medical care aligned with their values, goals, and preferences, especially regarding end-of-life decisions in serious chronic illnesses. Objective: This project aimed to introduce and promote evidence-based ACP in oncology and palliative care at a midsized hospital near Berlin, Germany, during the COVID-19 pandemic. Methods: This project was guided by the JBI Evidence Implementation Framework and used a mixed methods audit cycle. A baseline audit was conducted using qualitative interviews and workshops with representatives from all the health care disciplines involved in oncology and palliative care at the hospital. The findings were compared with eight best practice recommendations. Targeted strategies aimed at the key stakeholders involved in ACP practice were then implemented. Finally, a semi-quantitative questionnaire was used in a follow-up audit with the same participants as in the baseline audit. Results: The baseline audit revealed a high level of familiarity with the concept of ACP. However, there was a lack of a uniformly accepted definition and understanding of ACP among the health care professionals, leading to a lack of coordination in task distribution. The follow-up audit revealed improvements with regard to education and training in ACP (Criterion 1: 50% to 100%) and organizational support to facilitate ACP conversations (Criterion 3: 87.5% to 100%). Other audit criteria compliance rates remained unchanged. Conclusion: Clinical education and team-based process analysis can facilitate ACP implementation across disciplines in oncology and palliative care facilities. However, the project did not succeed in implementing lasting changes in clinical processes and best practice ACP due to the COVID-19 pandemic. Such an endeavor would demand considerable resources and time, both of which were constrained during the pandemic. [ABSTRACT FROM AUTHOR]

Background: Primary care can be an important setting for communication and advance care planning (ACP), including for those with dementia and their families. The study objective was to explore experiences with a pragmatic trial of a communication and ACP intervention, SHARING Choices, in primary care for older adults with and without dementia. Method s : We conducted qualitative interviews using tailored semi‐structured guides with three groups: ACP facilitators who conducted the intervention; clinicians, managers, and administrators from sites randomized to the intervention; and patients and families who met with ACP facilitators. We used thematic analysis to identify and synthesize emergent themes based on key Consolidated Framework for Implementation Research concepts and Proctor's Implementation Outcomes, triangulating the three groups' perspectives. Results: We identified five key themes. For acceptability, perceptions of the intervention were mostly positive, although some components were not generally implemented. For adoption, respondents perceived that ACP facilitators mainly focused on conducting ACP, although facilitators often did not implement the ADRD and family engagement aspects with the ACP. For relational connections, ACP facilitator—practice and clinician communication and engagement were key to how the intervention was implemented. For adaptability, ACP facilitators and health systems adapted how the ACP facilitation component was implemented to local preferences and over time, given the pragmatic nature of the trial. And, for sustainability, ACP facilitators and clinicians/managers/facilitators were positive that the intervention should be continued but noted barriers to its sustainability. Patients and families generally did not recall the intervention. Conclusions: ACP facilitators and clinicians, managers, and administrators had positive perceptions of the ACP facilitator component of the intervention in this pragmatic trial with adaptation to local preferences. However, engaging those with dementia and families was more challenging in the implementation of this intervention. [ABSTRACT FROM AUTHOR]

Background: Advance care planning empowers people by allowing them some control over certain healthcare decisions in the event they are unable. Yet, advance care planning rates in the American Indian and Alaska Native populations are low. Thus, we culturally tailored the Make Your Wishes About You (MY WAY), an intervention to improve advance care planning access and completion for American Indian peoples. Methods: In partnership with an American Indian Tribe, the project took a community-based participatory orientation and relied on a Community Advisory Board and a Professional Advisory Board. The culturally tailoring was a 15-step process. These steps allowed us to ensure that the tailoring reflects community-specific norms and preferences, greater reliance on visual images and local idioms of expression, more appropriate attention to family roles, and inclusion of spiritual elements. Results: A four-phase cultural tailoring framework emerged with each phase centering around listening, learning, and analyzing with tailoring occurring between each phase. A culturally tailored MY WAY was created, which was delivered in a manner that reflected Tribal citizenss' preferences. Materials included Tribal language, local idioms of expression, attention to family roles, and appropriate inclusion of spiritual elements. The materials were rated high on a content validity index by the advisory board members. Conclusion: There is a growing interest in tailoring existing evidence-based programs with relatively little in the literature offering guidance. By sharing our efforts and experiences in culturally tailoring an advance care planning program for an American Indian Tribe, we hope that it will serve useful for future efforts in ensuring that evidence-based programming reaches those in greatest need. While this project was rooted in the core Indigenous values of community, ceremony or spirituality, language, and place it also lends itself to broader translation across different populations. [ABSTRACT FROM AUTHOR]

• The use of advance care planning in home care services is limited. • Systematic and planned conversations would be beneficial to enhance collaboration with elderly chronically ill home-dwelling patients. • It could be difficult to decide when and for whom advance care planning should be conducted. • The importance of spontaneous conversations must not be forgotten in addition to using structured tools. This study explores nurses' experience and reflections on the use of advance care planning (ACP) for older adult patients in home care services. The study employs an explorative qualitative design. Five focus groups with 21 nurses in home care services were conducted and analyzed using content analysis. Three main categories were identified; 1) limited experience with the use of ACP, 2) reflections on systematic use of ACP and 3) prerequisites for successful ACP conversations. The participants revealed limited experience with ACP but recognized that such conversations could provide important clarifications for patient and family caregiver support. The use of ACP needs to be individually tailored, involving family caregivers, and being conducted in collaboration with a physician. The need for open conversations initiated by the patient or family caregivers should be addressed. For successful implementation, competence building, a planned process, and support from management are essential. ACP could be beneficial in the follow-up of older, chronically ill patients living at home, but should not substitute the need for individualized spontaneous conversations. [ABSTRACT FROM AUTHOR]

• Determining the factors that influence dementia patients' participation in advance care planning can inform the development of planned interventions for dementia patients, reduce over-treatment of dementia patients at the end of life, and improve patients' adherence to end-of-life care. • Combining the results of the test of heterogeneity of the analyzed influences with the results of the subgroup analysis from the multidimensional perspective. • The findings found that gender, age, race, education, dementia severity, restrictions on activities of daily living, religious affiliation, and the patient's financial status were associated with participation in advance care planning. • Identifying relevant influencing factors will help advance care planning to be applied to dementia patients faster and better, provide differentiated health services for dementia patients, and design specific interventions. A meta-analysis was conducted based on the available evidence to determine the influencing factors associated with the participation of people with dementia in advance care planning. A keyword search was performed in seven databases, Web of Science, PubMed, Embase, Cochrane Library, CINAHL, Scopus, and Void, to search for eligible studies published from the time of library construction up to February 1, 2024, to examine the factors influencing the participation of dementia patients in advance care planning and its effects. The quality of the included studies was evaluated using the Newcastle-Ottawa Scale (NOS) and the assessment criteria of the Agency for Healthcare Research and Quality (AHRQ). After literature search, data extraction and quality assessment were completed independently by two researchers, meta-analysis was performed using Stata software 15.0 to pool the odds ratios (OR) and 95% confidence intervals (CI). Heterogeneity between studies was assessed using the Cochran chi-square test (Cochran 's Q) and I2 values. A total of 19 studies were included in this study, and Meta-analysis showed that 8 of the 16 influencing factors were statistically significant: Patients' gender (OR=1.17; 95%: 1.13–1.2), age (OR=1.07; 95%: 1.03–1.1), education (OR=1.98; 95%: 1.65–2.38), race (OR=2.61; 95%: 1.67–4.08), the severity of the dementia (OR=1.46; 95%: 1.34- 1.58), ability to perform activities of daily living (OR=0.99; 95%: 0.97–1.0), religious affiliation (OR=2.24; 95%: 1.23–4.06), and patient income(OR=2.10; 95%: 1.47–2.98) were associated with participation in advance care planning. The participation of dementia patients in advance care planning is influenced by gender, age, education, race, dementia severity, ability to perform activities of daily living, religious affiliation and patient income. The results of the study can inform the development of targeted interventions for dementia patients, thereby reducing overtreatment of dementia patients at the end of life and improving patient adherence to hospice care. [ABSTRACT FROM AUTHOR]

• Many fundamentals can be traced back to a number of basics of nursing and being human. • Through using senses and intuition, nurses connect and adapt to needs and preferences. • End-of-life communication is a dance in which nurses move along with older people. 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. [ABSTRACT FROM AUTHOR]

Objective: Care partners of persons living with dementia perform significant financial planning in partnership with the person for whom they care. However, research is scarce on care partners' confidence and experiences with financial planning. The purpose of this study was, first, to quantify care partners' confidence across different financial planning topics. We sought to understand whether income, education, relationship type, and years of experience are related to care partners' level of confidence in financial planning. Second, we sought to better understand the reasons for these confidence ratings by examining care partners' experiences of financial planning. Methods: We conducted an online survey that asked a combination of quantitative and qualitative questions to understand care partners' confidence and experiences with financial planning. Participants were nationally recruited care partners of persons living with dementia. Multivariate linear regression was used to understand different subgroups' levels of confidence in each financial planning topic. Inductive thematic analysis was used to understand qualitative data. Results: The financial planning topics in which participants (N = 318) felt the least confident were: options when there is not enough money to provide care; tax deductions available to cut care costs; and sources of money from government programs for which the care recipient is eligible. Differences in confidence were observed among care partners with lower incomes, less experience, and caring for a parent. Qualitatively, participants described the challenges of care budgeting and protecting personal finances; confusion about long-term care insurance and accessing resources; and, among confident care partners, reasons for this sense of preparedness. Conclusions: These results underscore the need for tailored interventions and technologies that increase care partners' confidence in specific aspects of financial planning, including long-term care insurance, available financial support, and what to do when money runs out. [ABSTRACT FROM AUTHOR]

Background Given the typical trajectory of glioblastoma, many patients lose decision-making capacity over time, which can lead to inadequate advance care planning (ACP) and end-of-life (EOL) care. We aimed to evaluate patients' current ACP and EOL care status. Patients and Methods We conducted a cohort study on 205 patients referred to oncologists at a Korean tertiary hospital between 2017 and 2022. We collected information on sociodemographic factors, cancer treatment, palliative care consultation, ACP, legal documents on life-sustaining treatment (LST) decisions, and aggressiveness of EOL care. Results With a median follow-up time of 18.3 months: 159 patients died; median overall survival: 20.3 months. Of the 159 patients, 11 (6.9%) and 63 (39.6%) had advance directive (AD) and LST plans, respectively, whereas 85 (53.5%) had neither. Among the 63 with LST plans, 10 (15.9%) and 53 (84.1%) completed their forms through self-determination and family determination, respectively. Of the 159 patients who died, 102 (64.2%) received palliative care consultation (median time: 44 days from the first consultation to death) and 78 (49.1%) received aggressive EOL care. Those receiving palliative care consultations were less likely to receive aggressive EOL care (83.3% vs 32.4%, P  < .001), and more likely to use more than 3 days of hospice care at EOL (19.6% vs 68.0%, P  < .001). Conclusions The right to self-determination remains poorly protected among patients with glioblastoma, with nearly 90% not self-completing AD or LST plan. As palliative care consultation is associated with less aggressive EOL care and longer use of hospice care, physicians should promptly introduce patients to ACP conversations and palliative care consultations. [ABSTRACT FROM AUTHOR]

Background and Objectives Oral health of older adults in nursing homes is poor, which can negatively affect general health and well-being. Most oral health problems are preventable with good oral hygiene and regular dental check-ups. Caregivers can help improve residents' oral health through regular oral health assessments. The interRAI instrument used in Long-Term Care Facilities to evaluate older adults' health and well-being, has the potential to integrate oral care into general care planning. The recently optimized Oral Health Section for inclusion in the interRAI instruments (OHS-interRAI) enables nondental caregivers to identify residents requiring help with oral hygiene and/or a dental referral. This study reports the first data obtained using the OHS-interRAI, describing the oral health situation of older adults in Flemish and Dutch nursing homes. Research Design and Methods In this cross-sectional study, interRAI Long-Term Care Facilities data, including OHS-interRAI data, were collected from October 2020 to January 2023 and analyzed from 417 and 795 persons aged 65 years or older in Flemish and Dutch nursing homes, respectively. Results Most common oral health problems were poor oral hygiene and compromised teeth. Differences in oral health were found between Flemish and Dutch residents. Flemish residents had significantly more problems with chewing, dry mouth, oral and denture hygiene, and tongue condition than their Dutch counterparts. They also had a higher need for help with oral hygiene (19.4% vs 14.0%), and a dental referral (36.8% vs 20.9%). Older adults in Flemish nursing homes (20.3%) had significantly fewer dental check-ups than those in Dutch nursing homes (73.5%). Discussion and Implications The use of the OHS-interRAI by nondental caregivers identified at least one-third of the residents requiring help with oral hygiene and/or a dental referral. By means of trigger algorithms (Collaborative Action Points), the OHS-interRAI enables the integration of oral care into general care planning. [ABSTRACT FROM AUTHOR]

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Objective: Given the importance of advance care planning (ACP) in the context of a pandemic, we aimed to assess current adherence to local policy recommending ACP in all hospitalised adult patients with suspected or proven COVID-19 at Liverpool Hospital, Sydney, Australia. Design: A retrospective cohort study. Setting: A tertiary referral and teaching hospital. Participants: A select sample of adult patients admitted to Liverpool Hospital in 2019-2021 with suspected or proven COVID-19. Main outcome measures: Proportion of patients with documented ACP and format of ACP. Results: Amongst 209 patients with proven or suspected COVID-19 hospitalised between March 2019 through to September 2021, median frailty score was 3, the median Charlson Comorbidity Score was 4, median age of the patients was 71 years, and median length of hospital stay was 5 days (range 0-98 days). Almost all patients were tested for COVID-19 (n = 207, 99%) of which 15% (31) were positive. Fewer than a quarter of the patients had documented ACPs (50, 24%) and 17 patients had existing formal advance care directives. Patients who had ACP were older, more likely to be frail and more likely to have higher rates of comorbidity compared to those without ACP. ACP was more commonly discussed with family members (41/50) than patients (25/50) and others (5/50). Conclusion: Adherence to the local ACP policy mandating such discussions was low. This reinforces the need for prioritising ACP discussions, especially for unwell patients such as those with COVID, likely involving further input to improve awareness and rates of formal documentation. [ABSTRACT FROM AUTHOR]

Background: There are missed opportunities to discuss goals and preferences for care with seriously ill patients in the acute care setting. It is unknown which factors most influence clinician decision-making about communication at the point of care. Objective: This study utilized a cognitive-interviewing technique to better understand what leads clinicians to decide to have a goals of care (GOC) discussion in the acute care setting. Methods: A convenience sample of 15 oncologists, intensivists and hospitalists were recruited from a single academic medical center in a large urban area. Participants completed a cognitive interview describing their thought process when deciding whether to engage in GOC discussions in clinical vignettes. Results: 6 interconnected factors emerged as important in determining how likely the physician was to consider engaging in GOC at that time; (1) the participants' mental model of GOC, (2) timing of GOC related to stability, acuity and reversibility of the patient's condition, (3) clinical factors such as uncertainty, prognosis and recency of diagnosis, (4) patient factors including age and emotional state, (5) participants' role on the care team, and (6) clinician factors such as emotion and communication skill level. Conclusion: Participants were hesitant to commit to the present moment as the right time for GOC discussions based on variations in clinical presentation. Clinical decision support systems that include more targeted information about risk of clinical deterioration and likelihood of reversal of the acute condition may prompt physicians to discuss GOC, but more support for managing discomfort with uncertainty is also needed. [ABSTRACT FROM AUTHOR]

Background: Advance Care Planning via Group Visits (ACP-GV) is a patient-centered intervention facilitated by a clinician using a group modality to promote healthcare decision-making among veterans. Participants in the group document a "Next Step" to use in planning for their future care needs. The next step may include documentation of preferences in an advance directive, discussing plans with family, or anything else to fulfill their ACP needs. This evaluation seeks to determine whether there are identifiable subgroups of group participants with differing needs prior to delivery of the ACP-GV program and, if so, to use information about the subgroups to enhance the program offered to veterans in United States Department of Veterans Affairs (VA) healthcare settings. Methods: We conducted a secondary analysis of national data from a quality improvement evaluation. Patient- and provider-level data from administrative healthcare records for VA users in all 50 states, territories, and the District of Columbia provides data on veterans attending ACP-GV during federal fiscal years 2018–2022 (N = 26,857). Latent class analysis seeks to identify the various subgroups of veterans based on their level of ACP self-efficacy before attending ACP-GV and any demographic differences across the resulting subgroups of veterans attending ACP-GV. ACP self-efficacy is derived from seven items obtained from a participant worksheet used during the group. Results: Analysis revealed two distinct groups of veterans, distinguishable by their pre-ACP-GV levels of one aspect of ACP self-efficacy: prior knowledge of ACP. Veterans with higher prior knowledge of ACP are associated with an identified next step focused on checking their current AD status and updating it, and veterans with lower ACP prior knowledge are associated with identifying a next step to discuss ACP more fully with family. Differences in age, sex, race, ethnicity, and marital status exist across subgroups of veterans. Conclusion: Greater attention must be paid to ACP and veterans' prior knowledge of ACP to consistently encourage annual review and status updates. [ABSTRACT FROM AUTHOR]

During the disease trajectory, patients with advanced heart failure are often hospitalised with a high probability of admission to the intensive care setting. Using a case study, this article explores the care given to a patient with decompensated heart failure in an intensive care unit (ICU). It will discuss the significance of holistic assessment and effective symptom management, in particular the research related to breathlessness management. The importance of effective communication within the ICU multidisciplinary team, including with the patient/family will be explored, as the ICU environment can often lead to communication breakdown, patients being unable to voice their wishes and over-medicalisation. The effectiveness of early involvement of the palliative care team in ICU will be examined, including the use of tools such advance care planning and a treatment escalation plan and whether use of these can enable a better patient and family experience at the end of life. The role of palliative care champions will be discussed. [ABSTRACT FROM AUTHOR]

Background: Chronic kidney disease (CKD) prevalence is steadily increasing, in part due to increased multimorbidity in our aging global population. When progression to kidney failure cannot be avoided, people need unbiased information to inform decisions about whether to start dialysis, if or when indicated, or continue with holistic person-centred care without dialysis (conservative kidney management). Comparisons suggest that while there may be some survival benefit from dialysis over conservative kidney management, in people aged 80 years and over, or with multiple health problems or frailty, this may be at the expense of quality of life, hospitalisations, symptom burden and preferred place of death. Prepare for Kidney Care aims to compare preparation for a renal dialysis pathway with preparation for a conservative kidney management pathway, in relation to quantity and quality of life in multimorbid, frail, older people with advanced CKD. Methods: This is a two-arm, superiority, parallel group, non-blinded, individual-level, multi-centre, pragmatic trial, set in United Kingdom National Health Service (NHS) kidney units. Patients with advanced CKD (estimated glomerular filtration rate < 15 mL/min/1.73 m2, not due to acute kidney injury) who are (a) 80 years of age and over regardless of frailty or multimorbidity, or (b) 65–79 years of age if they are frail or multimorbid, are randomised 1:1 to 'prepare for responsive management', a protocolised form of conservative kidney management, or 'prepare for renal dialysis'. An integrated QuinteT Recruitment Intervention is included. The primary outcome is mean total number of quality-adjusted life years during an average follow-up of 3 years. The primary analysis is a modified intention-to-treat including all participants contributing at least one quality of life measurement. Secondary outcomes include survival, patient-reported outcomes, physical functioning, relative/carer reported outcomes and qualitative assessments of treatment arm acceptability. Cost-effectiveness is estimated from (i) NHS and personal social services and (ii) societal perspectives. Discussion: This randomised study is designed to provide high-quality evidence for frail, multimorbid, older patients with advanced CKD choosing between preparing for dialysis or conservative kidney management, and healthcare professionals and policy makers planning the related services. Trial registration: ISRCTN, ISRCTN17133653 (https://doi.org/10.1186/ISRCTN17133653). Registered 31 May 2017. [ABSTRACT FROM AUTHOR]

Background: Through advocacy initiatives such as roadshows during "National ACP Week", the Agency for Integrated Care (AIC) had increased advance care planning (ACP) engagement since 2011. Project Happy Apples (PHA), a community initiative project led by medical students from the National University of Singapore, also conducted a public exhibition to raise ACP awareness during this period. This study aimed to investigate and identify predictors of attitudes towards ACP documentation among 'ACP Week' respondents which may be used to formulate strategies to increase ACP documentation in Singapore. Methods: A cross-sectional study on ACP documentation attitudes of 262 respondents during local roadshows were conducted. Multiple logistic regression models were built to investigate the associations between demographic variables and attitudes toward ACP documentation. Results: The mean age was 43.5 years (SD = 17.4), 79 (30.15%) were males and 49 (18.7%) were healthcare professionals (HCP). 117 (44.66%) respondents had prior experience with serious illness and 116 (44.27%) had heard of ACP. Age was a significant predictor of readiness to sign official papers naming nominated healthcare spokesperson (NHS) (OR = 1.04, 95%CI: 1.02–1.07). Experience with serious illness was a significant predictor of readiness to discuss end-of-life (EOL) care with healthcare professionals (HCP) (OR = 3.65, 95%CI: 1.36–11.61). Being female was a significant predictor for readiness to speak to their nominated healthcare spokesperson about EOL care (OR = 7.33, 95%CI: 2.06–46.73). Subgroup analyses revealed that those aged 20–39 were less likely to speak to their healthcare professional about or sign official papers regarding EOL care. We also found that being a healthcare professional does not necessitate better or worse attitudes. Conclusion: Advocacy programs tailored to targeting respondents of different age groups and prior experience with serious illness may improve the efficacy of advocacy efforts. [ABSTRACT FROM AUTHOR]

Within the healthcare settings of the United States Department of Veterans Affairs (VA), one patient-centered intervention, Advance Care Planning via Group Visits (ACP-GV), engages veterans and those they trust in advance care planning (ACP) by facilitating a discussion that encourages participants to plan for future healthcare needs. ACP-GV is a one-hour, single session group intervention facilitated by a trained clinical professional (e.g., physician, nurse, social worker, psychologist, chaplain) and delivered in a healthcare or community-based setting. Using reporting guidelines for group-based and educational interventions, this paper aims to describe the ACP-GV Facilitator Training used to prepare clinical professionals to offer the ACP-GV intervention to participants. We provide health professional students and early career health professionals with an overview of the training and key tips for using group modalities in the clinical setting. Although the training is initially directed towards health professionals who are learning to offer ACP-GV for the first time, our tips for teaching also focus on and extend to facilitating ACP-GV directly with veterans, caregivers, and those they trust. The ACP-GV Facilitator Training is sequential in that it expects clinicians to first learn the required educational content and how to plan a group, then it engages clinicians in practicing group facilitation skills. At the conclusion of the training, clinicians are then instructed to use the training materials to transfer the information and skills they learned about ACP-GV to patients they encounter in their respective work settings. The culmination of the ACP-GV Facilitator Training is, therefore, when the clinician is able to facilitate their own group, guide discussions and activities, actively use training materials, and encourage veterans and those they trust to participate in a discussion regarding ACP in a group setting. Finally, we share key resources for publicly available and accessible online trainings to promote spread outside of VA. ACP-GV's Facilitator Training can assist healthcare professionals in implementing ACP-GV in a variety of care settings. [ABSTRACT FROM AUTHOR]

Background: Past studies have shown mixed results on how gender and living with a spouse or partner impact advance care planning (ACP). Few if any have tested for the interaction between these two variables. Objective: We examined how gender and couple status interact to impact the use of ACP practices including written instructions, designating a durable power of attorney for healthcare (DPOAHC), and discussing one's decisions with others. Design: We used cross-sectional data taken from the Health and Retirement Study, a longitudinal study of adults over the age of 50 in the United States. Methods: Data are from 632 respondents who died between the 2016 core survey and the 2018 exit survey. Participants had completed the 2016 survey and had a proxy informant complete the 2018 exit survey after their death. Generalized linear mixed models were used to test for main effects and interactions. Results: Women were more likely than men to designate a DPOAHC and to discuss their wishes with others. Women living without a partner were more likely than men living without a partner and coupled households to discuss their wishes with family or others. Conclusion: Both gender and couple status are important variables associated with ACP practices. Healthcare providers may want to reach out to women living within a coupled household and men living without a partner to ensure that they know the benefits of ACP. Plain language summary: Are men and women living with a partner less likely to make plans for the type of medical treatment they prefer at the end of life? Why was the study done? To see if men and women living alone or with a partner were more likely to make plans for the type of medical treatment they preferred at the end of life. We examined whether they had written plans, designated someone to make decisions for them, or discussed their wishes with other family members or healthcare providers before they died. What did the researchers do? The research team used survey data from the Health and Retirement Study in the United States on 632 people who had completed a survey in 2016 and died within two years. A family member or friend completed a survey after the person's death reporting on their preferences for end-of-life medical care. What did the researchers find? Women were more likely than men to designate another person to make medical decisions for them and to discuss their wishes with others. Single women were more likely than single men and people living with a partner to discuss their wishes with family or others. What do the findings mean? Women living alone may be more likely to see the benefits of making their end-of-life medical care wishes known to others. Men living alone were the least likely to make their wishes known. Healthcare providers may want to keep these differences in mind when reaching out to patients to explain the benefits of making plans for medical treatments in the future. [ABSTRACT FROM AUTHOR]