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Numerous neurosurgical (NSG) conditions entail high morbidity, mortality, and prolonged ICU stays. Palliative care (PC) serves to alleviate suffering, align treatment with patient preferences, and is linked to enhanced patient and family outcomes as well as reduced care costs. Notably, no studies have addressed demographic and clinical factors associated with PC receipt in NSG patients. Our aim is to identify characteristics and outcomes, particularly end of life outcomes, of hospitalized NSG patients associated with a PC consult compared with usual NSG care. A retrospective chart review was performed of patients admitted to the NSG service from January 1, 2017 to December 31, 2018 at the University of Iowa Hospitals & Clinics. Data regarding demographics, clinical outcomes, and GOC and ACP documentation were collected. The most common reasons for a PC consult were goals of care, end of life issues, and comfort care. Of 121 total decedent patients, 97 (80.2%) had PC referrals. Patients with a PC referral had longer hospital stays (10.3 days vs 4 days) and had the majority of care in the ICU (90.7% vs 83.3%). However, fewer PC patients died in the ICU (42.3% vs 75%) and more had PCA/NCA use (51.5% vs 8.3%), code status changes to DNR (90.7% vs 62.5%), GOC documented (78.4% vs 0%) and ACP documentation (35.1% vs 16.7%). In conclusion, in NSG patients, the integration of PC may contribute to improved end-of-life care., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Advance care planning (ACP) is potentially helpful for older adults, however, the rate of uptake in community aged care settings is low. Previous pilot studies suggest that holistic, person-centered ACP approaches may be effective for older adults who experience functional impairment but do not necessarily have life-limiting conditions with clear prognoses. This paper describes the protocol of a randomized trial to test the effectiveness of combined life story work and facilitated ACP in promoting ACP engagement among older adults receiving community aged care services., Methods: The Enhanced Advance care planning and life Review Longitudinal Intervention (EARLI) trial is an open-label, cross-over, cluster randomized controlled trial with 12 participating aged care organizations in New South Wales and Western Australia. Participants are aged 65 years or older, receiving home care services and capable of providing informed consent at initial recruitment. Recruitment occurs across a two-year period, with study sites randomized to receive the four-session intervention in the first or second year (or a single session 'active control' condition). Primary outcomes are participant-reported ACP engagement and ACP documentation in the aged care client record 12 weeks post-recruitment. Secondary outcomes include measures of decisional conflict, anxiety and depression, meaning-based coping and relationship quality. Analysis will take an intention-to-treat approach., Conclusion: This trial tests a novel method of reaching older adults using a holistic, person-centered approach to promoting ACP engagement. Enhancing ACP engagement may reduce decisional conflict, minimize hospital admissions and improve outcomes for people and their families. ANZCTR Trial Registration ID: ACTRN12622001399785., Competing Interests: Declaration of competing interest The authors have no competing interests to declare., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Disparities in advance care planning (ACP) among older Latinos necessitate targeted interventions to enhance engagement and knowledge in end-of-life care. This study aimed to evaluate the effectiveness of a resource-efficient, culturally tailored educational intervention in improving ACP readiness and knowledge among older Latino adults in the community., Methods: A quasi-experimental pretest-posttest design was used to assess the impact of the intervention. The study involved community-dwelling older Latinos (aged 61-94) in the U.S. attending community wellness centers. Measures included participants' knowledge of ACP, care options, familiarity with hospice and palliative care, and attitudes toward hospice, assessed using pre- and post-intervention surveys., Results: Statistically significant improvements were observed in ACP knowledge, understanding of care options, and attitudes towards hospice and palliative care post-intervention. Demographic factors influenced knowledge scores, with no significant gender differences in the intervention's efficacy., Conclusions: The educational intervention effectively enhanced end-of-life care planning readiness and knowledge among older Latinos. The study highlights the potential for sustainable, accessible, and culturally sensitive educational strategies to reduce disparities in ACP knowledge and possibly engagement., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: Perceptions towards advanced care planning (ACP) amongst individuals with Ischemic Heart Disease before or after a life-threatening Acute Myocardial Infarction event is underexamined and could impact the appropriate timing for ACP advocacy. This cross-sectional study assessed awareness and intentions regarding ACP in individuals with Ischemic Heart Disease, both before and after an Acute Myocardial Infarction, and explored the motivating effect of a near-fatal Acute Myocardial Infarction event on its engagement., Methods: This study was conducted from 24 August 2021 through 13 March 2023, whereby patients were administered a one-time questionnaire with no follow-up required. Patients with either chronic Ischemic Heart Disease (group A) or a recent Acute Myocardial Infarction event (group B) were recruited from the outpatient National University Heart Centre, Singapore., Results: 101 patients (n = 51 for Group A, n = 50 for Group B) were recruited. Mean age (SD) was 59 (10.5) years and 84 were male (83.2%). Between both groups, patients in group B reported significantly higher scores on 'Lack of information' and 'Self-efficacy' domains, and had no ACP awareness nor plans of doing an ACP compared to group A. ACP awareness was the sole significant predictor of intentions of doing an ACP in the final regression model ( P < .05)., Conclusions: Interestingly, this study suggests that surviving a potentially life-threatening heart condition did not result in higher intention of doing an ACP. Thus, advocacy of ACP in the community should simply start by raising awareness levels widely and may not need to be focused on individuals' state of health., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Preferences of patients with advanced cancer are well studied in Western countries but less so in Asian communities where end-of-life discussions can be seen as taboo. This may lead to patients receiving care that is incongruent with their wishes as their disease progress. It is important for healthcare providers to have a better understanding of patients' experiences and preferences especially in a multicultural country like Malaysia with its diverse beliefs and values to facilitate better planning for future medical care., Objectives: To explore the experiences and preferences of Malaysian patients with advanced cancer., Design: Qualitative study of semi-structured interviews with thematic analysis., Setting/subjects: Purposive sampling of 19 patients with Stage 4 cancer recruited from inpatient and outpatient settings in National Cancer Institute Malaysia., Results: Three major themes emerged in the exploration of patients' experiences and care preferences in facing advanced cancer namely: 1) Dealing with poor prognosis 2) Spirituality as a source of strength and 3) Enablers of advance care planning., Conclusion: This study highlighted the preference for healthcare providers to be culturally sensitive during end-of-life care discussion and the need for improved spiritual care for Malaysian patients with advanced cancer. Further studies exploring the role of spiritual and cultural factors in advance care planning among Malaysians would be helpful in guiding these efforts., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objective: The objective of this review was to examine community-dwelling older people's experiences of advance care planning with health care professionals., Introduction: The importance of health care professionals initiating advance care planning for patients has been reported; however, because of the shift from institutionalized to community care, community-dwelling older people have fewer opportunities to discuss these plans with health care professionals compared with older people living in other settings. The timely initiation of advance care planning and sustainable discussions among older people, their families, and community health care professionals is necessary and may improve palliative and end-of-life care., Inclusion Criteria: Studies with participants aged 60 years and older who have experience with advance care planning and live in their own homes in the community were included. We considered qualitative studies and the qualitative component of mixed methods studies published between January 1999 and April 2023 in English or Japanese., Methods: MEDLINE (EBSCOhost), CINAHL (EBSCOhost), Embase, PsycINFO (EBSCOhost), JSTOR, Scopus, Japan Medical Abstract Society, and CiNii were searched for published papers. Google Scholar, ProQuest Dissertations and Theses Global and MedNar were searched for unpublished papers and gray literature. Study selection, critical appraisal, data extraction, and data synthesis were conducted by 2 independent reviewers using the JBI approach and JBI standardized tools. Findings were pooled using a meta-aggregation approach. The synthesized findings were graded using the ConQual approach for establishing confidence in the output of qualitative research syntheses and presented in a Summary of Findings., Results: Five studies published between 2017 and 2022 were included in the review. Each study scored between 6 and 8 out of 10 on the JBI critical appraisal checklist for qualitative research. We extracted 28 findings and aggregated them into 7 categories, generating 3 synthesized findings: i) A trusting relationship with health care professionals is essential for older people's decision-making. Health care professionals' attitudes, knowledge, and skills play a role in this, influencing the perceived quality of care; ii) Shared decision-making and patient-centered communication are essential. Older people feel ambiguity toward end-of-life decision and advance care planning, and they want their wishes to be heard in any situation to maintain their autonomy and quality of life; iii) Older people need the appropriate forms and accessible and coordinated care to begin advance care planning., Conclusion: Qualitative studies on community-dwelling older people's experiences of advance care planning with health care professionals are scarce. The experiences have illustrated that trusting relationships influence people's perception of the quality of care they receive; there is uncertainty about their future; and they have varying feelings or attitudes toward their impending death, including denial and avoidance. This review highlights the need for appropriate forms, and accessible and coordinated care to begin advance care planning; thus, an approach that meets the individual's health and psychosocial status should be selected carefully. Further research is recommended to include older populations from broader geographical and cultural backgrounds, and to assess and evaluate the different advance care planning approaches and their implementation processes among groups of community-dwelling older people with different health and psychosocial statuses., Review Registration: PROSPERO CRD42020122803., Competing Interests: The authors declare no conflict of interest., (Copyright © 2025 JBI.)

Topic Importance: This narrative review emphasizes the growing interest in palliative care for people with serious lung diseases such as COPD. It reflects on recent publications from the American Thoracic Society, the World Health Organization, and European Respiratory Society, with a focus on nonpharmacologic palliative care for people with COPD from both the health care professional and organizational perspective., Review Findings: The concept of palliative care has changed over time and is now seen as applicable throughout the entire disease trajectory according to need, in conjunction with any disease-modifying therapies. Palliative care should pay attention to the needs of the person with COPD as well as the informal caregiver. Timely integration of palliative care with disease-modifying treatment requires assessment of needs at the individual level as well as organizational changes. High-quality communication, including advance care planning, is a cornerstone of palliative care., Summary: Therefore, services should be based on the understanding that palliative care is not only specific standardized actions and treatments, but rather a holistic approach that includes compassionate communication, treatment, and care addressing the patient and informal and formal caregivers. Living with and dying of COPD is much more than objective measurements. It is the sum of relationships with others and the experience of living in the best possible harmony with one's own values and hopes, despite having a serious illness., (Copyright © 2024 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.)

Introduction/Aims: This national survey builds on previous qualitative research examining potential palliative care needs among people living with ALS (pALS) by quantifying and investigating relationships among pALS' stage of illness progression; physical, emotional, social, spiritual, and intimacy-related concerns; advance care planning behaviors; perceptions of feeling heard and understood by healthcare providers; and overall quality of life. Methods: Researchers partnered with national organizations to recruit pALS to participate in a one-time survey comprising items from validated instruments (eg, the ALS Specific Quality of Life Instrument-Revised) and researcher-generated measures. Data were analyzed using logistic and linear regression. Results: Among pALS (n = 112), many respondents indicated they had discussed their wishes for end-of-life care with family or friends, shared their wishes with providers, and documented their wishes in writing (79.5%, 49.1%, and 63.4%, respectively). Mean (M) quality of life scores were moderate (M ≈ 6 of 10). Illness stage was associated with documentation of end-of-life care wishes but not with having discussed these wishes with others or with overall quality of life. Reported emotional intimacy received was comparable to that desired (difference = .01 of 10); however, a greater desire for physical intimacy relative to that received was indicated (difference = 1.75 of 10). Discussion: Interdisciplinary palliative care teams may enhance ALS care by promoting advance care planning behaviors (particularly discussing one's wishes with healthcare providers), providing interventions to improve quality of life, and supporting pALS in navigating challenges related to physical intimacy., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Idiopathic and progressive pulmonary fibrosis (IPF/PPF) of known cause are relatively rare lung diseases with a limited survival time after diagnosis. Conscious attention for palliative care is recommended. Optimal care requires collaboration to define goals and preferences for future medical treatment and care with the patient and their families, to inform (or enable) Advance Care Planning (ACP)., Objective: To get insight into the frequency of key elements of ACP described after dialogues with patients with IPF/PPF., Methods: A retrospective audit included charts of patients with IPF/PPF who died between December 2017 and December 2020. A data extraction model was developed based on a guideline for patient federation and wider literature and finally consisted of fourteen key elements. Subsequently content analysis was performed., Results: The medical charts of 60 patients showed that an element of ACP was recorded in 57(95%) of cases. No medical chart contained all fourteen key elements of ACP. Most frequently recorded ACP elements were: knowledge of illness, goals of treatment and care and fears and concerns., Conclusion: The lack of structural implementation of ACP in the care for patients with interstitial lung disease, results in only some elements of ACP being dialogued by health care professionals (HCP). These notes recorded are often superficial and reflect the view of the HCP. Implementation of ACP conversations and structured documentation is needed to gain better insight into the wishes and preferences of the patient., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: With the entry into force of sect. 132g of the Social Code Book [SGB] V in 2018, nursing homes and homes for persons with disabilities providing integration support in Germany can get reimbursed by the statutory health insurance funds for advance care planning (ACP) services. The aim of this feasibility study was to evaluate the number of service records to be submitted, examine the containing information about the consultation process, and assess their potential for research., Methods: We analyzed aggregated data from a large German statutory health insurance fund (AOK Lower Saxony) for 2018-2022 on the contracts concluded for ACP. In addition, anonymized service records from nursing homes and homes for persons with disabilities providing integration support from 2020 to 2022 (no records available for 2018 and 2019) were evaluated descriptively. These records contained information on the type and duration of the consultation process, as well as the number of consultations conducted. Furthermore, facility-specific information was available for facilities with at least one service record, including the number of care places and the number of consultants meeting the qualification requirements of sect. 132g SGB V., Results: In 2018-2022, n = 101 ACP contracts were concluded between the n = 1,415 nursing homes located in Lower Saxony and the state associations representing the interests of the health insurance providers (homes for integration support: n = 104). For the years with service records available (2020-2022), n = 134 contracts were signed. Of these facilities, n = 50 (37 %) had at least one service record, and only one facility (2 %) had more than one facilitator. Of the total n = 230 service records, 97 % documented a first-time consultant process. The process had a mean duration of 33 days and included an average of 2.9 consultant sessions. 13 % of the processes were completed in one day and almost 90 % after three months., Discussion/conclusion: We found a low number of (1) signed ACP contracts, (2) facilitators in the facilities, and (3) service records available at the health insurance company. However, service records are only one part of ACP. This is why, overall, service records in their current form appear to be of poor usability in the context of both scientific research and the further development of ACP., (Copyright © 2024. Published by Elsevier GmbH.)

Introduction: Autonomy at the end of life is associated with the ability to make self-determined decisions. The heterogeneous field of inpatient integration assistance poses particular challenges in this context. Advance care planning (ACP) is now available to people with disabilities. Nevertheless, little is known about the institution-related needs and the current status with regard to ACP in integration assistance homes., Methods: A survey of all 850 inpatient homes providing integration assistance for adults in Bavaria was carried out. The survey was conducted online and addressed to home managers. In total, data of 96 homes (11.3% of all homes) was included in the descriptive and categorizing text analysis., Results: Residents die in 60% of the homes surveyed. 73.7% of the homes offer ACP for their residents, with 62.9% of these homes using standardized procedures. One of the reasons given by the participants for not offering ACP is a better qualification of employees. Barriers include the residents' lack of ability to participate in ACP meetings or relatives' reluctant attitude towards ACP., Discussion: End-of-life care is a relevant topic for inpatient homes providing integration assistance. Accordingly, ACP is already being addressed by a large proportion of homes. Here, special needs of residents due to existing impairments can pose challenges., Conclusion: The study enables us to draw conclusions about the optimization of ACP from the perspective of care homes, which relate to structural (e.g., adaptation of existing concepts), personal (e.g., qualification) and emotional (e.g., de-tabooization) aspects., (Copyright © 2024. Published by Elsevier GmbH.)

Purpose of Review: Shared decision making is crucial in palliative care for people with serious chronic respiratory diseases and their informal caregivers. Patient education is a critical component in this process, as it provides patients and their informal caregivers the necessary knowledge for informed decisions regarding symptom management, coping with breathlessness, and advance care planning. However, education does not automatically lead to acquiring knowledge. This review describes challenges for education for people with serious chronic respiratory diseases and their informal caregivers and describes how learner-centered education can address these., Recent Findings: People with serious chronic respiratory diseases and their informal caregivers face diverse information needs and learning challenges, with low health literacy and cognitive problems being common. Healthcare professionals can facilitate learner-centered education by enhancing motivation for knowledge acquisition by meeting information needs and learning preferences of patients and their informal caregivers, and by ensuring that information is understandable and readable for those with low health literacy and cognitive problems. E-health applications may serve as valuable tools in this process., Summary: Learner-centered education may enhance knowledge acquisition in people with serious chronic respiratory diseases and their informal caregivers aiming to gain control over symptoms and optimize shared decision making and advance care planning., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc.)

Purpose of Review: The impacts of early palliative care for patients with advanced cancer are well described. This has led to endorsement of early palliative care, alongside cancer treatment, by leading cancer organisations. The aim of this review is to consider how best to adopt and integrate the learning from studies of early palliative care into an effective, sustainable service that is offered as part of routine cancer care., Recent Findings: 'Timely', 'targeted' and 'precision' approaches have been proposed to ensure that limited palliative care resources are available to those who are most likely to benefit. Triage and referral based on individual patients' needs has been shown to be both efficient and effective. Standardised referral criteria and the use of tools to assess complexity may support equitable service development. A specialist multidisciplinary approach is a common factor underpinning successful integration between palliative care and oncology but does not negate the importance patient-centred considerations such as advance care planning, which can be facilitated by non-specialist teams., Summary: The challenge is no longer whether early palliative care should be provided, but how. Evidence-based strategies about how best to implement early palliative care are needed to inform appropriate resourcing, funding, and delivery., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc.)

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., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: New national clinical guidelines are now available on advance care planning (ACP). Confidence in communication is important for implementation of the guidelines. This study aims to identify healthcare personnel's self-perceived confidence in communication about future medical care and patients' wishes at the end of life., Material and Method: Healthcare personnel in twelve geriatric units in South-Eastern Norway Regional Health Authority responded to an online questionnaire survey in autumn 2022. The four response alternatives for self-reported confidence - 'unconfident', 'fairly confident', 'very confident' and 'extremely confident'- are combined into two categories: 'limited confidence' ('unconfident' and 'fairly confident') and 'high confidence' ('very confident' and 'extremely confident')., Results: We received responses from 289 of the 470 (61.5 %) invited, with an average age of 37.8 ± 11.3 years, of whom 217 out of 289 (75 %) had more than five years of professional experience. Of the doctors, 15 out of 67 (22 %) reported limited confidence in communication about 'future deterioration of the patient's health condition', 20 out of 67 (30 %) about 'life-sustaining treatment' and 13 out of 67 (19 %) about 'preferences towards the end of life'. For other healthcare personnel, the corresponding responses were 119 out of 222 (54 %), 140 out of 222 (63 %) and 109 out of 222 (49 %)., Interpretation: Self-assessed confidence in communication about future deterioration, future medical care and the patient's own wishes at the end of life varies, and such confidence is limited among many health personnel in geriatric units. Measures appear to be needed to increase confidence in the communication and implementation of ACP in the Norwegian health service.

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.

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., Competing Interests: A.E.-J. serves as a consultant for Incyte Corporation, GSK, and Tuesday Health. S.E. received grant funding for palliative care-related research/work from California Healthcare Foundation, Blue Shield of California, and Stupski Foundation. The remaining authors declare no conflict of interest., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc.)

Background: Adults with congenital heart disease (ACHD) are at risk for lower quality of life (QOL) and psychological health. Behavioral interventions to meet their psychosocial needs are lacking. The aim of this study is to evaluate the feasibility of implementing the Promoting Resilience in Stress Management (PRISM) intervention in ACHD and its efficacy in increasing resilience in this population., Methods: We designed a phase II randomized controlled clinical trial of patients with moderate or complex ACHD, physiological stages C or D. Enrolled participants will be randomized to receive PRISM or usual care. PRISM is a manualized, skills-based behavioral intervention comprised of four one-on-one sessions targeting resilience resources (stress-management, goal-setting, cognitive reframing, meaning making), an optional session on advance care planning, and a facilitated family meeting. Participants in both groups will complete study questionnaires at enrollment and 3-months later. The primary aim is to describe feasibility, namely the proportions of patients who a) enroll in the study among those eligible, and b) complete the PRISM intervention among those randomized to that arm. We will also evaluate PRISM's efficacy by using linear regression models to compare changes in mean resilience scores between assigned groups. In exploratory analyses, we will evaluate effects on QOL, psychological distress, perceived competence for health care management, and comfort with advance care planning., Discussion: This study will provide rigorous evidence to determine the feasibility and efficacy of a brief intervention to promote resilience and psychosocial health in ACHD. Findings may guide the development of a future multi-site effectiveness study., Clinical Trial Registration: NCT04738474., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024. Published by Elsevier Inc.)

Background: The COVID-19 pandemic necessitated the transition from in person to virtual advance care planning (ACP) engagement efforts. This pilot initiative evaluated virtual group visits (GVs) and in-person GVs for ACP to determine their feasibility and effectiveness., Methods: Participants included patients in a Geriatric Medicine clinic who were referred by their primary care physician to an ACP GVs intervention. The ACP GVs had 2 sessions, led by clinicians with ACP expertise who facilitated a discussion on patients' values, goals, and preferences. Participants were provided with technical assistance to support use of the virtual platform. Evaluation included an ACP readiness survey, post-session feedback, GV observations, and electronic health record review at baseline and a 6 month follow-up for goals of care documentation and advance directives., Results: Seventy patients attended 46 ACP GVs from August 2019 to February 2022, including 16 in-person GVs and 54 virtual GVs. At a 6 month follow-up, for virtual GVs participants (n = 54), goals of care documentation increased from 31% to 93%, and advance directives increased from 22% to 30%. For in-person GVs participants (n = 16), goals of care documentation increased from 25% to 100%, and advance directives increased from 69% to 75%. All surveyed patients in both formats would recommend ACP GVs., Conclusion: ACP GVs are feasible and effective for supporting ACP, demonstrating an increase in both goals of care conversations and advance directives completion., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Patients are frequently admitted to hospital in the last year of life. Actively recognising patients at this stage gives the opportunity to plan future care., Methods: We performed a cross-sectional survey of all acute medical and surgical inpatients at one tertiary hospital. Two simple screening tools, the indicators for a palliative approach and the surprise question identified a group of patients at greatly increased risk of dying over the next year., Results: The one-year mortality of the study group was 27%, however was 52% and 65% for those identified at risk by the indicators for a palliative approach and surprise question tools. The surprise question had an area under the receiver operator curve value of .84., Conclusion: These screening tools could be used to help clinicians identify hospital inpatients that would benefit from advance care planning and a tailored approach to their care., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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., Competing Interests: A.E.-J. serves as a consultant for Incyte Corporation, GSK, and Tuesday Health. The remaining authors declare no conflict of interest., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc.)

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., Competing Interests: S.E. received grant funding for palliative care-related research/work from the California Healthcare Foundation, Blue Shield of California, and Stupski Foundation. A.K.C. received honoraria payments for participating on a national Advisory Committee that began in June 2023. J.A.G. has received research funding from Blue Note Therapeutics, remuneration from BeiGene for serving as an advisory board member, and royalties from Oxford University Press. The remaining authors declare no conflict of interest., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc.)

Competing Interests: Competing interests: MJT is an editor of Evidence-Based Nursing.

Background: The coronavirus pandemic has hit the oldest and frailest individuals hard, particularly patients and residents in nursing homes. In March 2020, we established a Covid-19 ward at a nursing home in Bergen, western Norway for elderly patients with Sars-CoV-2 infection and in the need of treatment and care in a primary health care facility. The aims of this study were to describe the organization of the ward, the clinical outcomes of infection, treatment, mortality rates in the population, the level of advanced care planning, and end-of-life care for those who died., Methods: We present patient characteristics, outcomes, vaccination status, treatment, decisions regarding treatment intensity upon clinical deterioration, and mortality for the patients in the ward. Clinical factors possibly related to a fatal outcome were analysed with chi square test (categorical variables) or t-test (continuous variables)., Results: 257 patients were included from March 2020 to April 2022. Fifty-nine patients (23.0%) developed respiratory failure. Ten patients (3.9%) were admitted to hospital. Advance care planning was undertaken for 245 (95.3%) of the patients. 30-day mortality rate decreased from 42 to 4% during the study period. Of the 29 (11.3%) patients who died, all were well alleviated in the terminal phase, and 26 (89.7%) of them had a Clinical Frailty Scale (CFS) value ≥ 7. A high score for CFS, respiratory failure and respiratory co-infection were significantly associated with Covid-19 related death within 30 days., Conclusions: Covid-19-related mortality markedly decreased during the study period, and a high score for CFS was related to a fatal outcome. Thorough planning of treatment intensity upon deterioration, low hospitalization rates, and good relief for those who died suggest that dedicated Covid-19 wards in nursing homes can provide good treatment for the patients and relieve other nursing homes and specialist health care services., (© 2024. The Author(s).)

Prison populations are rapidly aging. Persons in prison age quicker and suffer more chronic illness and disability than their nonincarcerated peers, posing challenges to caring for prisoners who are chronically ill and dying. The goal of our study was to describe state prisons' practices and policies addressing persons in prison with advanced chronic and life limiting illness through a national web-based survey of state-level prison health care professionals. In particular, we focused on advanced care planning, use of health care directives, decision-making about goals of care, including life sustaining treatments, The response rate was 22% for a sample size 152 completed surveys. The average age of respondent was 52 years; majority were female and Caucasian, and had worked in corrections more than 8 years. Nearly half were registered nurses. Most reported their prison did not have a dedicated end-of-life care program and only 11% offered a peer-care program. However, two-thirds indicated their facility provided the opportunity to designate a health care agent with physicians most likely responsible for facilitating completion of a health care directive. It is evident the care of persons aging and dying in prison is complex and requires further investigation addressing staff and prison population education, ethics guidelines for care, compassionate release, and advance care planning. This study suggests that hospice and palliative care professionals could collaborate with corrections professionals and national organizations to provide innovative education and support to enhance the humane care of this vulnerable population., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: All authors listed on this manuscript disclose NO actual or potential conflicts of interest that may affect their relationships and activities, directly or indirectly, related to this work.

Background: The increasing incidence of heart failure (HF) in the elderly leads to increased mortality, hospitalization, length of hospital stay, and health care costs. Older adults often face multiple drug treatments, comorbidities, frailty, and cognitive problems, which require early palliative care. However, these patients do not receive adequate palliative care., Objective: This concept analysis aimed to develop an in-depth understanding of palliative care for elderly patients with cardiac diseases in tertiary care., Design: The analysis was guided by Walker and Avant's method, and databases were searched using keywords, such as palliative care, tertiary care, elderly, and heart. Covidence was used to review the results using the inclusion and exclusion criteria., Results: The World Health Organisation's definition of palliative care is widely accepted. Palliative care for older adults with heart disease in tertiary care is preceded by chronic illness, polypharmacy, symptom burden, physical and cognitive decline, comorbidities, and psychosocial/spiritual issues. The main attributes of palliative care for this population include health care professionals and patient education, holistic patient/family-centered care, symptom management, shared decision-making, early integration, advanced care planning, and a multidisciplinary approach. Palliative care improves elderly cardiac patients' and their family satisfaction while reducing readmission, hospital stays, and unnecessary invasive procedures., Conclusion: Collaboration between hospitals, community organizations, transitional palliative care services, and research has the potential to improve early palliative care and the well-being of the elderly cardiac population. Advanced Practice Nurses (APNs) competencies play a crucial role in promoting palliative care in the elderly HF population., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Study Background: The practice of acute care nurses is shaped by organizational factors such as lack of privacy, heavy workloads, unclear roles, lack of time, and lack of specific policies and procedures. We know little about the social and organizational structures and processes that influence nurses' uptake of valuable patient-centered discussions like advance care planning (ACP). ACP is beneficial for patients, their substitute decision makers, and healthcare providers., Purpose: To describe the operational, organizational, and societal influences shaping nurses' ACP work in acute care settings., Methods: This ethnographic study purposively sampled 14 registered nurses and 9 administrators who worked in two acute care hospitals in Northeastern Ontario. Methods consisted of 23 open-ended, semi-structured interviews, 20 hours of observational fieldwork, and a collection of publicly available organizational documents. Data were inductively analyzed using an iterative constant comparative approach., Results: Nurses were challenged to meet multiple competing demands, leaving them to scramble to manage complex and critically ill acute care patients while also fulfilling organizational tasks aligned with funding metrics, accreditation, and strategic planning priorities. Such factors limited nurses' capacity to engage their patients in ACP., Conclusions: Acute care settings that align patient values and medical treatment need to foster ACP practices by revising organizational policies and processes to support this outcome, analyzing the tasks of healthcare providers to determine who might best address it, and budgeting how to support it with additional resources.

Background: Low socio-economic status can lead to poor patient outcomes, exacerbated by lack of integration between health and social care and there is a demand for developing new models of working., Aim: To improve connections between patients, local services and their communities to reduce unscheduled admissions., Design and Setting: A primary care cluster with areas of high deprivation, consisting of 11 general practices serving over 74,000 people., Method: A multi-disciplinary team with representatives from healthcare, local council and the third sector was formed to provide support for people with complex or social needs. A discharge liaison hub contacted patients following hospital discharge offering support, while cluster pharmacists led medicine reviews. Wellbeing Connectors were commissioned to act as a link to local wellbeing and social resources. Advance Care Planning was implemented to support personalised decision making., Results: Unscheduled admissions in the over 75 age group decreased following the changes, equating to over 800 avoided monthly referrals to assessment units for the cluster. Over 2,500 patients have been reviewed by the MDT since its inception with referrals to social prescribing groups, physiotherapy and mental health teams; these patients are 20% less likely to contact their GP after their case is discussed. An improved sense of wellbeing was reported by 80% of patients supported by wellbeing connectors. Staff feel better able to meet patient needs and reported an increased joy in working., Conclusion: Improved integration between health, social care and third sector has led to a reduction in admissions, improved patient wellbeing and has improved job satisfaction amongst staff., (© 2024. The Author(s).)

Introduction: Advance care planning (ACP), a critical component of quality dementia care, is underutilized due to lack of clinician comfort and the challenging nature of ACP in this context. The Serious Illness Conversation Guide (SICG) is a well-validated clinician-facing tool, developed with patient and clinician input, to facilitate ACP. The aim of this project was to adapt the SICG for dementia for the first time to promote high-quality ACP. Methods: This study uses a mixed-methods approach to adapt the SICG tool for use in dementia care. Experts with relevant clinical, ethical, and topical knowledge were interviewed to develop alterations to the SICG for dementia care. Patients and caregivers were shown a mock interview of the adapted SICG for dementia (SICG-D) to elicit feedback. Results: 8 relevant experts were interviewed. Adaptations included topical alterations to make the conversation more applicable to dementia as well as alterations to the structure of the conversation to accommodate the patient-caregiver dyad. Twenty interviews were conducted with 14 patients and 18 caregivers (either together or separately). A thematic content analysis of interview transcripts demonstrated positive impressions of the tool. In anonymous survey results, 94% reported a positive impression of the conversation and 89% endorsed incorporation of the adapted guide into dementia healthcare. Conclusion: This paper presents the SICG-D, an adapted version of the SICG for use in dementia care. This guide leverages the strengths of the SICG to promote values-based ACP conversations and has been adapted to better facilitate patient-caregiver-clinician triadic communication., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Medical care received at end-of-life is often not aligned with individuals' values and care preferences. Much can get in the way of an individual communicating and documenting their preferences to care providers and close others, even if it is a goal to do so. The objective of this work was to develop a measure of Advance Care Planning Self-Efficacy (ACP SE) focused on three important behaviors: completing a living will, documenting a healthcare agent, and discussing quality versus quantity of life issues. Measure development was framed by the Transtheoretical Model (TTM) of behavior change. Following the completion of focus groups and formative qualitative work, an independent sample ( N = 310, adults aged 50+) was randomly split into two halves for exploratory and confirmatory factor analyses (EFA/CFA). Multivariate analyses examined relationships between ACP SE and other TTM constructs. Results of the CFA demonstrated excellent internal consistency (α = .95) and good model fit (CFI = .89, RMSEA = .13). Self-efficacy was framed by the TTM as situation-specific confidence. Through the measure development process, it was found that confidence to do ACP was impacted by various situational and attitudinal variables. ACP Self-Efficacy was found to differ significantly by Stage of Change. This study produced a reliable and valid measure of situation-specific confidence for ACP grounded within the TTM that could enhance future interventions aimed at increasing participation in ACP., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Advance care planning (ACP) is the process of having conversations with patients to ensure preferences are known and support patient healthcare goals. ACP and the Age-Friendly Health Systems (AFHS) Initiative's, "What Matters," are synergistic approaches to patient-centered conversations. Implementation and measurement of ACP in primary care (PC) are variables in quality and consistency. We examined whether participation in an ACP learning collaborative (LC) would improve knowledge and ability to conduct ACP discussions and increase the frequency of documented ACP in participating practices., Methods: The WWAMI (Washington, Wyoming, Alaska, Montana, and Idaho) region Practice and Research Network (WPRN) and the Northwest Geriatrics Workforce Enhancement Center collaboratively organized a 9-month virtual LC. It consisted of 4 synchronous, 1.5-h sessions, technical support, and a panel of ACP experts. A Wilcoxon rank sum test assessed differences in knowledge from a pre-post survey. Documentation of ACP in the EHR was collected after at least one plan-do-study-act cycle., Results: We enrolled 17 participants from 6 PC practices (3 hospital-affiliated; 3 Federally Qualified Health Centers) from the WPRN. Two practices did not complete all LC activities. There was a trend toward increased ACP knowledge and skills overall especially in having discussions patients and families (pre-mean 2.9 [SD = 0.7]/post-mean 4.0[SD = 1.1], p < 0.05). 4/6 practices observed an increase in EHR documentation post-collaborative (median 16.3%, IQR 1.3%-36.9%)., Conclusions: The LC increased PC providers knowledge and skills of ACP and AFHS's What Matters, reported ACP EHR documentation, and contributed to practice change., (© 2024 The Author(s). Journal of the American Geriatrics Society published by Wiley Periodicals LLC on behalf of The American Geriatrics Society.)

Advanced kidney disease is a progressive life-limiting illness associated with high symptom burden, disability, and highly intensive care near the end of life. There is growing interest in integrating palliative care principles into the care of patients with advanced kidney disease to improve care and outcomes for these patients. The United States (US) Department of Veterans Affairs (VA) has been a leader in advancing palliative care initiatives across its health system and whose experience and approach may be instructive to other health systems seeking to develop kidney palliative care (KPC) services. Herein, we review current KPC programs in the VA and highlight the different models of care that programs have been adopted and how key components of goals of care conversations and advance care planning, symptom management, multidisciplinary care, patient selection, and quality improvement have been implemented across programs. VA KPC programs have adopted "parallel", "merged", and "embedded" models of KPC that reflect the different configurations of partnerships between nephrology and palliative care providers to deliver KPC. A primary service of VA KPC programs is providing goals of care conversations and advance care planning to referred patients and systematically documenting the outcomes of these discussions in standardized note templates in the electronic medical record. Symptom management is delivered by KPC providers through regular shared or sequential visits with patients' nephrology providers and is guided by patient responses to validated symptom surveys. Programs are staffed by allied health professionals, such as chaplains, pharmacists, social workers, and dieticians, to provide whole-person care and regularly huddle with nephrology staff to reach a shared understanding of each patient's care needs and plan. KPC programs implement champions who select patients in greatest need of KPC using a combination of clinical events that trigger referral for KPC and validated mortality risk prediction scores that are automatically generated in each patient's medical record. KPC programs also routinely collect clinical, patient-reported, process, and care quality measures to assess its services. The experiences of the VA highlight novel approaches that strive to close the care gaps in meeting the KPC needs of patients with advanced kidney disease.

Few older adults discuss their end-of-life care wishes with their physician, and even fewer minorities do this. We explored physicians' experience with advance care planning (ACP) including the barriers/facilitating factors encountered when initiating/conducting ACP discussions with South Asians (SA), one of Canada's largest minorities. Eleven primary care physicians (PC) and 11 hospitalists with ≥ 15 per cent SA patients ≥ 55 years of age were interviewed: 10 in 2020, 12 in 2021. Thematic analysis of transcripts indicated that cultural and communication barriers, physician's specialization, SA older adults' lack of ACP awareness, and decision-making deference to family and physicians were barriers to ACP discussions. Although the COVID-19 pandemic impacted physicians' practices, contrary to our hypothesis most reported no change in frequency of ACP discussions. Although ACP discussions were viewed as best conducted by PC physicians, only 55 per cent had ACP training and only 64 per cent had used ACP tools. Training in ACP facilitation, concerning ACP tool usage, and training in patient-physician communication are recommended.

Background: Despite documented benefits of Advance Care Planning (ACP), it is still under-utilized in the U.S. Our study aimed to examine whether experiencing a loved one's death is associated with one's own ACP behavior among adults in the U.S. and the potential moderating effect of age. Method: Using a nationwide cross-sectional survey design with probability sampling weights, our study included 1006 adults in the U.S. who participated in and completed the Survey on Aging and End-of-Life Medical Care. Three binary logistic regression models were established to investigate the relationship between death exposure and different aspects of ACP (i.e., informal conversations with family members and doctors and formal advance directives completion). The moderation analysis was subsequently conducted to examine moderating effects of age. Results: The exposure to a loved one's death was significantly associated with higher odds of having conversations with family about end-of-life medical care preferences among the 3 indicators of ACP ( OR = 2.03, P < .001). Age significantly moderated the association between death exposure and ACP conversations with doctors ( OR = .98, P = .017). The facilitation effect of death exposure on informal ACP engagement in discussing end-of-life medical wishes with doctors is stronger among younger adults than older adults. Conclusions: Exploring an individual's previous experience with a loved one's death might be an effective way to broach the concept of ACP among adults of all ages. This strategy may be particularly useful in facilitating discussions of end-of-life medical wishes with doctors among younger adults than older adults., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Current literature indicates low uptake of advance care planning (ACP) among the Chinese-speaking community in Australia. To increase the uptake of ACP among the Chinese-speaking community, a better understanding of their attitudes and perceptions on end-of-life (EOL) matters, and ACP is required., Objective: This study aimed to identify significant events and social and cultural factors that influence participants' values and characterize the attitudes and perceptions towards ACP among older Chinese-speaking Australians., Methods: A qualitative study explored participants' experiences through semi-structured one-to-one interviews. The interviews were conducted in Mandarin, Cantonese or English, then translated and transcribed into English. The transcripts were coded and analysed thematically., Results: Twenty participants were recruited (14 female, six male). Participants typically reported a preference to make health-related decisions autonomously. Their perspectives were grounded in past experiences of illnesses and EOL decision-making of loved ones, personal values, and perceived needs. Family dynamics and intimacy of relationships appeared to influence the role and responsibility of family members in EOL decision-making and ACP. Most participants perceived the need to engage in ACP only when encountering significant health changes or higher care needs., Conclusion: Healthcare professionals should initiate ACP discussion using culturally appropriate communication with consideration of personal values, past experiences and family dynamics. Efforts should be invested in raising public awareness of ACP within the Chinese-Australian community., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The care of a nursing home resident suffering from dementia and aspiration pneumonia (AP) is generally initiated by the family doctor (FD) in collaboration with the nursing home professionals. This is a holistic emergency medicine whose occurrence should be the subject of advance care planning, an AP being rarely isolated, and its risk factors are known. AP - the probable cause of half of deaths of demented individuals in nursing homes - requires essentially non-hospital care. It calls on the scientific, relational, collaborative, and ethical skills of the family doctor. This review aims to contextualize the emergency management skills of the FD in the living environment of the nursing home. The management of uncertainty linked to a probabilistic diagnosis is highlighted and care commensurate with life expectancy is provided., Competing Interests: L’auteur n’a déclaré aucun conflit d’intérêts en relation avec cet article.

Purpose: To identify elements of timely integration of palliative care (PC) into hospital oncology care from best practices. Thereafter, to assess the level of consensus among oncology and PC specialists and patient and relative representatives on the characteristics of timely integration of PC., Methods: A three-round modified Delphi study was conducted. The expert panel consisted of 83 healthcare professionals (HCPs) from 21 Dutch hospitals (43 physicians, 40 nurses), 6 patient and 2 relative representatives. In the first round, four elements of integrated PC were considered: (1) identification of potential PC needs, (2) advance care planning (ACP), (3) routine symptom monitoring and (4) involvement of the specialist palliative care team (SPCT). In subsequent rounds, the panellists assessed which characteristics were triggers for initiating an element. A priori consensus was set at ≥ 70%., Results: A total of 71 (78%) panellists completed the first questionnaire, 65 (71%) the second and 49 (54%) the third. Panellists agreed that all patients with incurable cancer should have their PC needs assessed (97%), symptoms monitored (91%) and ACP initiated (86%). The SPCT should be involved at the patient's request (86%) or when patients suffer from increased symptom burden on multiple dimensions (76%). Patients with a life expectancy of less than 3 months should be offered a consultation (71%)., Conclusion: The expert panel agreed that timely integration of PC into oncology is important for all patients with incurable cancer, using early identification, ACP and routine symptom monitoring. Involvement of the SPCT is particularly needed in patients with multidimensional symptom burden and in those nearing death., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

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., Competing Interests: Declaration of interests MN received research grants from the Japan Society for the Promotion of Science and the Japan Agency for Medical Research and Development outside of this work. LVdB reports research grants from EU NAVIGATE, PACE, INDUCT, and DISTINCT under European Commission grant agreements and from Fonds Wetenschappelijk Onderzoek Flanders, Flanders Innovation and Entrepreneurship Francqui Foundation, Research Council University at Vrije Universiteit Brussel, Kom Op Tegen Kanker (Flemish Stand Up to Cancer), Foundation for Alzheimer Research, and the King Baudouin Foundation. LVdB has received book royalties from Oxford University Press; payment for lectures from the Flemish Federation of Palliative Care, Katholieke Universiteit Leuven for developing the content of an e-learning module for physicians; and payment from the Vrije Universiteit Brussel for a lecture within the postgraduate course on palliative care for masters and medicine. PJL received contract payment from National Technical University Norway. IH received research grants from the Health Care Research Agency Czech Republic and the Department of Health Social Care in Prague. JTvdS received salary support from a European Research Council personal Consolidator career award and Leiden University Medical Center Department of Public Health and Primary Care. All other authors declare no competing interests., (Copyright © 2024 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY 4.0 license. Published by Elsevier Ltd.. All rights reserved.)

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 < .0001 ). Group visits participants reported that being prompted to think about end-of-life preferences, gaining knowledge about ACP, and understanding the value of completing ACP documentation influenced their ACP readiness. While both interventions encouraged patients to start considering and refining their end-of-life preferences, group visits made patients feel more knowledgeable about ACP, highlighted the importance of completing ACP documentation early, and sparked further ACP discussions with others., Conclusions: While primary care patients may benefit from mailed ACP materials, patients reported increased readiness after ACP group visits. Group visits emphasized the value of upstream preparation, ongoing conversations, and increased knowledge about ACP., Competing Interests: Conflict of interest: None., (© 2023 Copyright by the American Board of Family Medicine.)

Background: The timing and the dose of Advanced Care Planning in patients with pancreatic ductal adenocarcinoma undergoing curative-intent resection are generally dictated by the surgeon performing the operation., Methods: A qualitative investigation using 1:1 interviews with 40 open-ended questions was conducted with a convenience sample of 10 high-volume pancreatic surgeons from across the country. The grounded theory approach was used for data analysis., Results: A total of 10 interviews were conducted with expert pancreatic surgeons-6 males and 4 females. During preoperative counseling, all surgeons attempt to motivate patients by emphasizing hope, optimism, and the fact that surgery offers the only opportunity for cure. All surgeons discuss the possibility of recurrence as well as postoperative complications; however, a majority perceived that patients do not fully appreciate the likelihood of recurrence or postoperative complications. All surgeons acknowledged the importance of end-of-life conversations when death is imminent. Seventy percent of surgeons had mixed opinions regarding benefits of preoperative Advanced Care Planning in the preoperative setting, while 20% felt it was definitely beneficial, particularly that delivery of care aligned with patient goals. All surgeons emphasized that Advanced Care Planning should be led by a physician who both knows the patient well and understands the nuances of pancreatic ductal adenocarcinoma management. Most common barriers to in-depth Advanced Care Planning discussion reported by surgeons include taking away hope, lack of time, and concern for sending "mixed messages.", Conclusion: We identified that surgeons experience a fundamental tension between promoting realistic long-term goals and expectations versus focusing on hope and enabling an overly optimistic perception of prognosis., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Background: Interventions with the potential for broad reach in ambulatory settings are necessary to achieve a life course approach to advance care planning., Objective: To examine the effect of a computer-tailored, behavioral health model-based intervention on the engagement of adults in advance care planning recruited from ambulatory care settings., Design: Cluster randomized controlled trial with participant-level analysis. (ClinicalTrials.gov: NCT03137459)., Setting: 10 pairs of primary and selected specialty care practices matched on patient sociodemographic information., Participants: English-speaking adults aged 55 years or older; 454 adults at practices randomly assigned to usual care and 455 at practices randomly assigned to intervention., Intervention: Brief telephone or web-based assessment generating a mailed, individually tailored feedback report with a stage-matched brochure at baseline, 2 months, and 4 months., Measurements: The primary outcome was completion of the following 4 advance care planning activities at 6 months: identifying and communicating with a trusted person about views on quality versus quantity of life, assignment of a health care agent, completion of a living will, and ensuring that the documents are in the medical record-assessed by a blinded interviewer. Secondary outcomes were completion of individual advance care planning activities., Results: Participants were 64% women and 76% White. The mean age was 68.3 years (SD, 8.3). The predicted probability of completing all advance care planning activities in usual care sites was 8.2% (95% CI, 4.9% to 11.4%) versus 14.1% (CI, 11.0% to 17.2%) in intervention sites (adjusted risk difference, 5.2 percentage points [CI, 1.6 to 8.8 percentage points]). Prespecified subgroup analysis found no statistically significant interactions between the intervention and age, education, or race., Limitations: The study was done in a single region and excluded non-English speaking participants. No information was collected about nonparticipants., Conclusion: A brief, easily delivered, tailored print intervention increased participation in advance care planning in ambulatory care settings., Primary Funding Source: National Institute of Nursing Research and National Institute of Aging.

Objectives: Motor neuron disease (MND) is a neurodegenerative disorder leading to functional decline and death. Multidisciplinary MND clinics provide an integrated approach to management and facilitate discussion on advanced care directives (ACDs). The study objectives are to analyse (1) the prevalence of ACD in our MND clinic, (2) the relationship between ACD and patient demographics and (3) the relationship between ACD decision-making and variables such as NIV, PEG, hospital admissions and location of death., Methods: Using clinic records, all patients who attended the MND clinic in Liverpool Hospital between November 2014 and November 2019 were analysed. Data include MND subtypes, symptom onset to time of diagnosis, time of diagnosis to death, location and reason of death. ACD prevalence, non-invasive ventilation (NIV) and percutaneous endoscopic gastrostomy (PEG) requirements were analysed., Results: There were 78 patients; M:F=1:1. 44 (56%) patients were limb onset, 28 (36%) bulbar onset, 4 primary lateral sclerosis and 2 flail limb syndrome presentations. 27% patients completed ACDs, while 32% patients declined ACDs. Patients born in Australia or in a majority English-speaking country were more likely to complete ACDs compared to those born in a non-English-speaking country. There was no significant correlation between ACD completion and age, gender, MND subtype, symptom duration, NIV, PEG feeding, location of death., Conclusion: One-quarter of patients completed ACDs. ACDs did not correlate with patient age, gender, MND subtype and symptom duration or decision-making regarding NIV, PEG feeding or location of death. Further studies are needed to address factors influencing patients' decisions regarding ACDs., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)

Abstract: Rapid response systems (RRS) have been introduced worldwide to reduce unpredicted in-hospital cardiac arrest (IHCA) and in-hospital mortality. The role of advance care planning (ACP) in the management of critical patients has not yet been fully determined in Japan.We retrospectively assessed the characteristics of all inpatients with unpredicted IHCA in our hospital between 2016 and 2018. Yearly changes in the number of RRS activations and the incidence of unpredicted IHCA with or without code status discussion were evaluated from 2014 to 2018. Hospital standardized mortality ratios were assessed from the data reported in the annual reports by the National Hospital Organization.A total of 81 patients (age: 70.9 ± 13.3 years) suffered an unpredicted IHCA and had multiple background diseases, including heart disease (75.3%), chronic kidney disease (25.9%), and postoperative status (cardiovascular surgery, 18.5%). Most of the patients manifested non-shockable rhythms (69.1%); survival to hospital discharge rate was markedly lower than that with shockable rhythms (26.8% vs 72.0%, P < .001). The hospital standardized mortality ratios was maintained nearly constant at approximately 50.0% for 3 consecutive years. The number of cases of RRS activation markedly increased from 75 in 2014 to 274 patients in 2018; conversely, the number of unpredicted IHCA cases was reduced from 40 in 2014 to 18 in 2018 (P < .001). Considering the data obtained in 2014 and 2015 as references, the RRS led to a reduction in the relative risk of unpredicted IHCA from 2016 to 2018 (ie, 0.618, 95% confidence interval 0.453-0.843). The reduction in unpredicted IHCA was attributed partly to the increased number of patients who had discussed the code status, and a significant correlation was observed between these parameters (R2 = 0.992, P < .001). The reduction in the number of patients with end-stage disease, including congestive heart failure and chronic renal failure, paralleled the incidence of unpredicted IHCA.Both RRS and ACP reduced the incidence of unpredicted IHCA; RRS prevents progression to unpredicted IHCA, whereas ACP decreases the number of patients with no code status discussion and thus potentially reducing the patient subgroup progressing to an unpredicted IHCA., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2021 the Author(s). Published by Wolters Kluwer Health, Inc.)

Background Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinicians) who are closely involved in the end-of-life experience with patients with destination therapy LVADs can help identify key opportunities for improving care. Methods and Results We conducted semistructured qualitative interviews with 7 bereaved caregivers of patients with destination therapy LVADs and 10 interdisciplinary LVAD clinicians. Interviews explored perceptions of preparing for end of life, communicating about end of life, and providing and receiving end-of-life care, and were analyzed using a 2-step team-based inductive approach to coding and analysis. Six themes pertaining to end-of-life experiences were derived: (1) timing end-of-life discussions in the setting of unpredictable illness trajectories, (2) prioritizing end-of-life preparation and decision-making, (3) communicating uncertainty while providing support and hope, (4) lack of consensus on responsibility for end-of-life discussions, (5) perception of the LVAD team as invincible, and (6) divergent perceptions of LVAD withdrawal. Conclusions This study revealed 6 unique aspects of end-of-life care for patients with destination therapy LVADs as reported by clinicians and caregivers. Themes coalesced around communication, team-based care, and challenges unique to patients with LVADs at end of life. Programmatic changes may address some aspects, including training clinicians in LVAD-specific communication skills. Other aspects, such as standardizing the role of the palliative care team and developing practical interventions that enable timely advance care planning during LVAD care, will require multifaceted interventions.

Palliative and end-of-life care has been pushed to the forefront of medical care during the pandemic caused by the coronavirus-2019 (COVID-19). Palliative care organizations have responded to the growing demand for the rapid dissemination of research, clinical guidance, and instructions for care to clinicians, patients with COVID-19, and their caregivers by creating COVID-19 resource Web pages. Here, end users can access resources that can be updated in real time. These Web pages, however, can be variable in what resources they offer and for whom they are designed for (clinicians, patients, caregivers). Therefore, this project was conducted to consolidate these resources via summary tables of specific contents available through each Web page grouped by palliative care domains (eg, care discussion and planning, communication, symptom management, care access) and to identify the target audience. This environmental scan was conducted by compiling a comprehensive list of COVID-19 resource Web pages of palliative care organizations generated by reviewing previously published research studies and consulting with palliative care research experts. Snowballing techniques were used to identify resource Web pages not captured in the initial scan. Two reviewers independently evaluated eligible Web pages for content via a form developed for the study, and Cohen κ statistic was calculated to ensure interrater reliability. The final κ statistic was 0.76. Of the 24 websites screened, 15 websites met our eligibility criteria. Among the eligible resource Web pages, most (n = 12, 80%) had specific target audiences and care settings, whereas the rest presented information targeted to all audiences. Although 11 Web pages offered resources that addressed all 4 domains, only 1 Web page conveyed all 12 subdomains. We recommend the use of this guide to all frontline clinicians who require guidance in clinically managing patients with COVID-19 receiving palliative care and/or end-of-life care., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2021 by The Hospice and Palliative Nurses Association. All rights reserved.)

Background/objectives: Quantitative studies have documented persistent regional, facility, and racial differences in the intensity of care provided to nursing home (NH) residents with advanced dementia including, greater intensity in the Southeastern United States, among black residents, and wide variation among NHs in the same hospital referral region (HRR). The reasons for these differences are poorly understood, and the appropriate way to study them is poorly described., Design: Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) is a large qualitative study to elucidate factors related to NH organizational culture and proxy perspectives contributing to differences in the intensity of advanced dementia care. Using nationwide 2016-2017 Minimum DataSet information, four HRRs were identified in which the relative intensity of advanced dementia care was high (N = 2 HRRs) and low (N = 2 HRRs) based on hospital transfer and tube-feeding rates among residents with this condition. Within those HRRs, we identified facilities providing high (N = 2 NHs) and low (N = 2 NHs) intensity care relative to all NHs in that HRR (N = 16 total facilities; 4 facilities/HRR)., Results/conclusions: To date, the research team conducted 275 h of observation in 13 NHs and interviewed 158 NH providers from varied disciplines to assess physical environment, care processes, decision-making processes, and values. We interviewed 44 proxies (black, N = 19; white, N = 25) about their perceptions of advance care planning, decision-making, values, communication, support, trust, literacy, beliefs about death, and spirituality. This report describes ADVANCE study design and the facilitators and challenges of its implementation, providing a template for the successful application of large qualitative studies focused on quality care in NHs., (© 2021 The American Geriatrics Society.)

This study aimed to develop a locally suitable advance care planning (ACP) program for older community-dwelling adults and a training program for nurse facilitators in Korea, and to evaluate their feasibility from the facilitators' experiences. This was a mixed methods pilot study that assessed the feasibility of an ACP program by analyzing survey, checklist, and focus group interview data. The ACP program was named CLOSE (Communicating and Listening to Our Seniors' voices about End-of-life care). Home health care nurses (N = 9) participated in this study. The participants reported that CLOSE was applicable to older community-dwelling adults and the training program was useful for increasing facilitator competency. We suggest some lessons from this pilot study that can be used to improve the ACP program and encourage community health nurses to participate in ACP as facilitators.