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This introduction to the special report "Facing Dementia: Clarifying End-of-Life Choices, Supporting Better Lives" explains why focused attention to dementia is needed in bioethics and in health care practice in a range of settings. It explains how this strongly age-associated condition shapes individual lives over years, revealing inequities in how dementia care is financed. The introduction explains the structure of the report, which consists of five essays, a consolidated set of recommendations from these essays, bibliographies, and other resources. The first essay is a landscape review written for health care professionals to support discussion, debate, and deliberation within professional societies and networks concerning a patient's voluntary choice to hasten their own death in the context of a dementia diagnosis. The landscape review is followed by three essays that suggest how several familiar concepts within care for persons with serious illness should be rethought to better support advance care planning, physician-patient conversations, and access to community-based palliative care and hospice when a person is facing dementia. The final essay presents a bold, practical argument for supporting better lives for people facing dementia, and for dementia caregivers, through primary care, the usual source of care for people with dementia., (© 2024 The Hastings Center.)

Background: Advance care planning is a process through which people communicate their goals and preferences for future medical care. Due to the complexity of the decision-making process, decision aids can assist individuals in balancing potential benefits and risks of treatment options., Objective: While decision aids have the potential to better promote advance care planning, their characteristics, content and application effectiveness are unclear and lack systematic review. Therefore, we aimed to explore these three aspects and establish a foundation for future research., Design: Scoping review., Methods: This scoping review adheres to the framework proposed by Arksey and O'Malley and the PRISMA-ScR list. Six English-language databases were systematically searched from the time of construction until 1 December 2023. Two researchers conducted the article screening and data extraction, and the extracted data was presented in written tables and narrative summaries., Results: Of the 1479 titles and abstracts, 20 studies fulfilled the inclusion criteria. Types of decision aids were employed, mainly websites and videos. Decision aid's primary components center around 11 areas, such as furnishing information, exploring treatment and care preferences. The main manifestations were a significant increase in knowledge and improved recognition of patients' target value preferences. Among the aids, websites and videos for advance care planning have relatively high content acceptability and decision-making process satisfaction, but their feasibility has yet to be tested., Conclusions: Decision aids were varied, with content focused on describing key information and exploring treatment and care preferences. Regarding application effects, the aids successfully facilitated the advance care planning process and improved the quality of participants' decisions. Overall, decision aids are efficient in improving the decision-making process for implementing advance care planning in cancer and geriatric populations. In the future, personalised decision aids should be developed based on continuous optimization of tools' quality and promoted for clinical application., Reporting Method: The paper has adhered to the EQUATOR guidelines and referenced the PRISMAg-ScR checklist., No Patient or Public Contribution: This is a review without patient and public contribution., Registration: https://doi.org/10.17605/OSF.IO/YPHKF, Open Science DOI: 10.17605/OSF.IO/YPHKF., (© 2024 John Wiley & Sons Ltd.)

Purpose: Having advanced cancer presents many challenges for patients and family caregivers. The FOCUS program is a psychoeducational nurse-led intervention, developed in the USA, to support dyads of patients with cancer and their family caregivers to live with the illness. The program includes a conversation manual and information resources for dyads. We aimed to develop a version of the program for dyads facing advanced cancer in six European countries., Method: The Participatory and Iterative Process Framework for Language Adaptation (PIPFLA) was used to guide the translation of the program to the local contexts of Belgium, Denmark, Ireland, Italy, the Netherlands, and the UK. In several rounds, potential program users (e.g., nurses, clinicians, patients, family caregivers) and researchers from all six countries reviewed program materials and advised on adaptations., Results: The PIPFLA process resulted in one European version of the program in different languages (FOCUS +). The FOCUS + conversation manual is uniform across all countries. The main adaptations included additional attention to both family caregiver and patient needs; more emphasis on self-management, advance care planning, and shared responsibilities; discussing the dyad's outlook rather than optimism; addressing the role of nurses as educational rather than therapeutic; and more suggestions to refer dyads to health care professionals for specific care needs. The information resources for dyads were adapted to fit with local contexts., Conclusion: The PIPFLA methodology is an efficient and effective framework to thoroughly translate and culturally adapt a complex USA-based program for use in six European countries in collaboration with end users., (© 2022. The Author(s).)

Purpose of Review: A rapid review was conducted to synthesize evidence of palliative care delivery changes during the COVID-19 pandemic. Changes were synthesized according to the eight domains of high-quality palliative care and enduring implications for oncology nurses beyond the pandemic discussed., Recent Findings: The most significant changes occurred in the structure and processes of palliative care (Domain 1), where increased utilization of telehealth was critical in circumventing barriers imposed by COVID-19 mitigation. The suboptimal availability of community-based psychosocial supports for patients and caregivers and inadequate health system-based psychosocial supports for healthcare providers were highlighted (Domains 3-5). The pandemic also ushered in an increased emphasis on the need for advance care planning (ACP), where integrating its delivery earlier in the outpatient setting and shifting policy to promote subsequent virtual documentation (Domain 8) were essential to ensure care preferences were clarified and accessible before health crises occurred., Summary: Continuing to embrace and sustain systems-level changes with respect to telehealth, psychosocial supports, and ACP are critical to bridging gaps in palliative care delivery underscored by the pandemic. Oncology nurses are well positioned to fill these gaps in care beyond the pandemic by providing evidence-based, palliative care throughout the cancer continuum., (Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.)

Aim: Following the establishment of paediatric palliative care services over recent decades, this study sought to identify information to inform future policy and practice., Methods: A rapid review using thematic synthesis was conducted to synthesise existing information about improving paediatric palliative care. Information was extracted in relation to key areas for investment and change: quality, access, advance care planning, skills, research, collaboration and community awareness., Results: A total of 2228 literature sources were screened, with 369 included. Synthesised information identified clear ways to improve quality of care, access to care, advance care planning, and research and data collection. The synthesis identified knowledge gaps in understanding how to improve skills in paediatric palliative care, collaboration across Australian jurisdictions and community awareness., Conclusions: The findings of this review bring together information from a vast range of sources to provide action-oriented information to target investment and change in paediatric palliative care over the coming decades., (© 2021 Paediatrics and Child Health Division (The Royal Australasian College of Physicians).)

Abstract: Advance care planning is an essential part of routine medical care. It is a billable, iterative process that can result in the completion of advance directives and medical orders, offering NPs the opportunity to assure goal-concordant care for their patients at the end of life., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Advance care planning discussions are crucial in the management and support of individuals with life-limiting or life-threatening conditions. Few studies have examined best practices for advance care planning with adolescents and young adults. Aim: To identify core components of current guidelines, frameworks and tools for advance care planning discussions with adolescents and young adults with life-limiting or life-threatening conditions and their families. Design: A scoping review of the literature was conducted followed by a thematic analysis of the included papers. The scoping review was reported according to the Joanna Briggs Institute approach to the conduct of scoping reviews. Data sources: Five databases [Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews, PsycInfo, PubMed and Scopus] were searched for English-language papers published between inception until January 2023. Results: The search yielded 2976 papers, of which 9 met the inclusion criteria. Five main themes were identified: (i) utilisation of standardised documents and protocols; (ii) shared decision-making between the adolescents and young adults, their families and the healthcare team; (iii) the importance of open and honest communication with adolescents and young adults during advance care planning discussions; (iv) individualisation and flexibility in the advance care planning process and (v) timing of advance care planning initiation. Conclusions: Results highlight the importance of engaging adolescents and young adults in advance care planning and considering their unique needs when initiating and framing these discussions. Our findings can be used by healthcare professionals to inform advance care planning in this group. [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) is a nuanced process where patients identify their goals and consider their preferences for medical care over time. Recent systematic reviews have shown mixed findings about the association of ACP with the provision of goal-concordant care, completion of advance directives, and health care utilization. Despite a lack of consistent benefit, patients and clinicians value ACP and policy makers at the state and federal level have been moving ACP policies forward. All fifty states have policies regarding advance directives, and federal policy has had important implications on promoting awareness of ACP and its corresponding legal documents such as advance directives. However, challenges to effectively incentivize and facilitate the delivery of high-quality ACP exist. This paper provides an overview of key federal policy aspects and barriers that affect ACP use including: limitations of Medicare ACP billing codes, disparities in telemedicine access, difficulties with interoperability of advance directives, and underutilization of ACP as a mandatory measure in federal programs. This paper highlights key opportunities to improve federal ACP policy. Because ACP is an essential part of high-quality care and is deeply embedded in state and federal policies, it is imperative that clinicians are knowledgeable about these issues so they may more effectively engage in ACP policy. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is the process supporting individuals with life-limiting illness to make informed decisions about their future healthcare. Ethnic disparities in ACP have been widely highlighted, but interpretation is challenging due to methodological heterogeneity. This review aims to examine differences in the presence of documented ACP in individuals' care records for people with advanced disease by ethnic group, and identify patient and clinician related factors contributing to this. Methods: Mixed-methods systematic review. Keyword searches on six electronic databases were conducted (01/2000–04/2022). The primary outcome measure was statistically significant differences in the presence of ACP in patients' care records by ethnicity: quantitative data was summarised and tabulated. The secondary outcome measures were patient and clinician-based factors affecting ACP. Data was analysed qualitatively through thematic analysis; themes were developed and presented in a narrative synthesis. Feedback on themes was gained from Patient and Public Involvement (PPI) representatives. Study quality was assessed through Joanna Briggs Institute Critical Appraisal tools and Gough's Weight of Evidence. Results: N=35 papers were included in total; all had Medium/High Weight of Evidence. Fifteen papers (comparing two or more ethnic groups) addressed the primary outcome measure. Twelve of the fifteen papers reported White patients had statistically higher rates of formally documented ACP in their care records than patients from other ethnic groups. There were no significant differences in the presence of informal ACP between ethnic groups. Nineteen papers addressed the secondary outcome measure; thirteen discussed patient-based factors impacting ACP presence with four key themes: poor awareness and understanding of ACP; financial constraints; faith and religion; and family involvement. Eight papers discussed clinician-based factors with three key themes: poor clinician confidence around cultural values and ideals; exacerbation of institutional constraints; and pre-conceived ideas of patients' wishes. Conclusions: This review found differences in the presence of legal ACP across ethnic groups despite similar presence of informal end of life conversations. Factors including low clinician confidence to deliver culturally sensitive, individualised conversations around ACP, and patients reasons for not wishing to engage in ACP (including, faith, religion or family preferences) may begin to explain some documented differences. Trial registration: PROSPERO-CRD42022315252. [ABSTRACT FROM AUTHOR]

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.

Background: Advance care planning is recommended as part of standard medical services. Readiness, denoting stages of behavior change, exerts a substantial influence on its uptake. However, the characteristics and impacts of advance care planning interventions on readiness are not well-established., Method: We systematically reviewed and conducted a meta-analysis of randomized controlled trials assessing the effects of advance care planning interventions on readiness. Studies were appraised using Joanna Briggs Institute Critical Appraisal tools. Meta-analyses were performed using mean difference of continuous variables or risk ratios of binary variables and their 95 % confidence interval as the pooled effect sizes., Results: Eight studies were included in this review and were all rated low quality. Meta-analysis showed that interventions resulted in slight improvement in overall readiness (mean difference = 0.19, 95 % confidence interval: 0.02-0.36) for advance care planning. However, statistically significant effects of interventions were not identified for readiness in relation to specific behaviors (appointment of a healthcare proxy, talking to a healthcare proxy, talking to a medical practitioner about living wills, and signing a living will)., Conclusion: Our meta-analyses demonstrated that interventions can improve the overall readiness for advance care planning, suggesting the necessity to integrate readiness into future health policies and clinical practices. Nevertheless, the absence of significant effects on specific behavioral readiness underscores the requirement for additional refinement in intervention design, advanced technologies, and theoretical foundations., Registration: Not registered., 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 Elsevier Ltd. All rights reserved.)

Advance care planning (ACP) is a process of discussion, reflection and communication, enabling planning for future medical treatment. Despite evidence of benefits of ACP to patients, families and the healthcare system, many die without an opportunity for such conversations, particularly those living with progressive non-malignant conditions. The Royal College of General Practitioners and Marie Curie Daffodil Standards launched in 2020 provide primary care with a structure for improving end-of-life care, including delivery of ACP. Proactive identification of patients is integral to the approach.We report on a quality improvement project which aimed to assess the take-up rate and acceptability in general practice of a timely and personalised ACP conversation using a 'What matters to you' (WMTY) framework, and to ensure that different diagnostic and demographic groups were included.Patients without previous ACP and potentially in the last year of life were offered an ACP conversation; a survey sought feedback.81% accepted the offer and in most cases, future care guidance was documented using the recognised format in Gloucestershire for recording ACP conversations, the Recommended Summary for Emergency Care and Treatment (ReSPECT) plan. Clinician and patient satisfaction was high.We concluded that an ACP discussion using a 'WMTY' format was highly acceptable to most. With recognised enablers in place and known barriers minimised, valuable personalised conversations occurred. Reframing the conversation to focus on how someone wants to live, while including their priorities for death, could alter how such conversations are perceived by clinicians and the public. It could remove negative associations (such as linking these conversations with an imminent death), which may increase motivation for all to initiate discussions.ACP conversations are evidenced best practice and could become routine in general practice with adjustments to practice processes and clinician education; the Daffodil Standards facilitate continued quality improvement., Competing Interests: Competing interests: Dr. Tabitha Winnifrith, Dr. Emma Husbands, Jane Haros and Helen Ballinger have declared no competing interests. Dr Catherine Millington-Sanders’s role as RCGP & Marie Curie national EOLC clinical champion is funded by Marie Curie; Marie Curie had no part in funding our study but they are responsible for funding the submission of the paper., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Advance care planning is a deliberative process that aims to help patients define goals and preferences for future care and treatment at a times when they have limited decision-making capacity. This study aims to analyze models of advance care planning in elderly individuals living in nursing homes. We reviewed papers published in Cochrane, PubMed and Embase. A total of 26 studies were selected, including a total of 44,131 people over 65 years of age. We analyzed the types of intervention (interviews, videos, workshops, documentation, etc.) and their results derived from the application. We conclude that no study implements a standardized intervention model. These interventions include decision-making (transfers to hospital, resucitation orders) and the adequacy of therapeutic effort (antibiotherapy, nutrition, serotherapy, etc.). Other outcomes are implementation barriers (time and training)., (Copyright © 2024 SEGG. Publicado por Elsevier España, S.L.U. All rights reserved.)

A diagnosis of dementia often comes with difficulties in understanding a conversational context and expressing how one feels. So far, research on how to facilitate advance care planning (ACP) for people with dementia focused on defining relevant themes and topics for conversations, or on how to formalize decisions made by surrogate decision makers, e.g., family members. The aim of this review is to provide a better scope of the existing research on practical communication aspects related to dementia in ACP conversations. In November 2020, seven databases were searched to select papers for inclusion (Proquest, Medline, Embase, Scopus, Psycinfo, Amed, and Cinahl). This search was updated in December 2021. The search strategy consisted of three tiers (related terms to "dementia," "communication" and "ACP"), intersected by using the Boolean term "AND," and resulted in 787 studies. Two researchers followed explicit criteria for two sequential levels of screening, based on titles and abstracts and full papers. A total of 22 studies were included for data analysis. Seven topics (i.e., importance of having ACP conversations, knowledge gap, inclusion of people with dementia in ACP conversations, policy vs. practice, adapting to cognitive changes, adapting to psychosocial changes, and adapting to emotional changes) emerged clustered around two themes (i.e., communicating with people with dementia in ACP, and changes in communication due to dementia). This scoping review provides practical suggestions for healthcare professionals to improve ACP communication and uncovered gaps in research on communication aspects related to dementia in ACP conversations, such as non-verbal behavior, timing and implementation, and personal preferences. [ABSTRACT FROM AUTHOR]

Introduction: Advance directives (ADs) has recently been considered as an important component of palliative care for patients with advanced cancer and is a legally binding directive regarding a person's future medical care. It is used when a person is unable to participate in the decision-making process about their own care. Therefore, the present systematic review investigated the factors related to ADs from the perspective of cancer patients. Methods: A systematic review study was searched in four scientific databases: PubMed, Medline, Scopus, Web of Science, and ProQuest using with related keywords and without date restrictions. The quality of the studies was assessed using the Hawker criterion. The research papers were analyzed as directed content analysis based on the theory of planned behavior. Results: Out of 5900 research papers found, 22 were included in the study. The perspectives of 9061 cancer patients were investigated, of whom 4347 were men and 4714 were women. The mean ± SD of the patients' age was 62.04 ± 6.44. According to TPB, factors affecting ADs were categorized into four categories, including attitude, subjective norm, perceived behavioral control, and external factors affecting the model. The attitude category includes two subcategories: "Lack of knowledge of the ADs concept" and "Previous experience of the disease", the subjective norm category includes three subcategories: "Social support and interaction with family", "Respecting the patient's wishes" and "EOL care choices". Also, the category of perceived control behavior was categorized into two sub-categories: "Decision-making" and "Access to the healthcare system", as well as external factors affecting the model, including "socio-demographic characteristics". Conclusion: The studies indicate that attention to EOL care and the wishes of patients regarding receiving medical care and preservation of human dignity, the importance of facilitating open communication between patients and their families, and different perspectives on providing information, communicating bad news and making decisions require culturally sensitive approaches. Finally, the training of cancer care professionals in the palliative care practice, promoting the participation of health care professionals in ADs activities and creating an AD-positive attitude should be strongly encouraged. [ABSTRACT FROM AUTHOR]

Background: Advance care planning is typically initiated during the last six months of a patient's life. However, due to the progressive decline in the decision-making process in individuals with dementia, their involvement in advance care planning is limited to the early stages of the disease. Currently, there is no consensus on the optimal timing for initiating advance care planning for people with dementia, and a comprehensive review of the literature addressing this matter is lacking., Objective: To explore the experiences and perspectives of people with dementia, their family caregivers, and health care professionals with regard to the optimal timing for initiating advance care planning., Design: A meta-synthesis was conducted., Data Source: The following eight electronic databases were searched: PubMed, Embase, Web of Science, Cochrane Library, CINAHL and CNKI, WanFang and Vip., Review Methods: This review uses thematic synthesis to systematically synthesize qualitative evidence and report findings according to The Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) and the Joanna Briggs Institute Manual for Evidence Synthesis. Study selection and data extraction were conducted independently by two researchers, and quality was evaluated using the Joanna Briggs Institute's Qualitative Research Standard Assessment tool., Findings: Twenty-one studies were selected for this review. This review involved an overarching theme: The utilization of pivotal elements to transition from delayed initiation to comprehensive implementation. Three themes emerge, including the prerequisites for initiating advance care planning, not ready to start advance care planning and struggling along narrow roads. For health care professionals, the selection of an opportune moment to initiate advance care planning for people with dementia is not only a challenge but also a crucial prerequisite for the successful implementation of advance care planning. Health care professionals' experience, attitude toward advance care planning, trust relationship with patients, cultural differences among people with dementia and their caregivers, and economic disparities all influence health care professionals' judgment of the timing for initiating advance care planning., Conclusions: Determining the optimal timing for initiating advance care planning is a complex process that requires a comprehensive consideration of the realities faced by health care professionals, people with dementia and their caregivers. Therefore, it is imperative to provide relevant training to health care professionals to ensure the successful implementation of advance care planning., 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 Elsevier Ltd. All rights reserved.)

Individuals often wait until the last moment to plan their end-of-life (EOL) care. Yet, decision-making capacity decreases with age, which could compromise engagement in and the effectiveness of advance care planning (ACP). Little is known about the association between cognitive abilities and the steps involved in the multifaceted process of ACP in older adults. The present study aims to better understand the association of global cognitive competence with engagement in ACP in a nationally representative sample of older adults in Switzerland. Global cognitive competence was measured via verbal fluency, immediate and delayed memory, basic calculation skills, and temporal orientation. Engagement in ACP included approving advance directives, having discussed EOL preferences, having a living will, and having a health care proxy. We analyzed data of 1,936 respondents aged 55+ from a paper-and-pencil questionnaire that was administered as part of Wave 6 (2015) of the Survey of Health, Ageing and Retirement in Europe in Switzerland using logistic regression models. Respondents with reduced global cognitive competence are less likely to have discussed their EOL preferences with others and to have a living will. Our results also indicate an interaction between age and cognition with respect to having a living will. Individuals with lower global cognitive competence in the oldest age group-adults aged 75 and older-are less likely to have a living will. Our findings highlight that low global cognitive competence can be seen as a barrier to engagement in ACP, particularly among adults 75 years and older. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Background: Advance care planning has been widely recommended to respect the medical care preferences of patients in the final stages of life. However, uptake of advance care planning in healthcare settings remains suboptimal. It may be beneficial to take into account individuals' readiness for advance care planning based on the stages to change identified in the Transtheoretical Model., Objective: To identify the measurements used to assess readiness of advance care planning based on the Transtheoretical Model, to pool the prevalence of readiness stages, and to summarize the factors affecting people's readiness for advance care planning., Design: Systematic review and meta-analysis., Methods: We systematically searched the databases of PubMed, EMBASE, The Cochrane Library, CINAHL, and Web of Science for relevant studies from inception to February 2023. A random effects model was used to estimate the pooled prevalence. And a narrative review on the factors associated with stages of readiness was conducted., Results: This meta-analysis included 25 studies involving a total of 4237 individuals. The precontemplation stage was the most commonly identified stage of readiness among advance care planning behaviors (26-72 %). The prevalence of readiness stages for advance care planning varied among different types of behavior. The behavior of "talking to health care proxy/family/loved ones about thoughts on quality versus quantity of life" had the highest level of readiness among all listed behaviors, followed by "talking to health care proxy/family/loved ones about living will", "signing a health care proxy form" and "signing a living will", "signing an advance directive", as well as "talking to doctors about living will". Regarding to influencing factors, a majority of sociodemographic and clinical factors did not show consistent associations with readiness, but some studies did suggest potential links with age, health status, countries, type of assessment, core structures of the Transtheoretical Model, and intervention modalities., Conclusions: A majority of individuals were unaware of advance care planning. There is an urgent need to promote readiness for such planning. Starting with preliminary activities such as "talking to health care proxy/family/loved ones about thoughts on quality versus quantity of life" can help initiate advance care planning. Better integration of the Transtheoretical Model and interventions into the research of advance care planning readiness are needed., Registration: Not registered., 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 © 2023 Elsevier Ltd. All rights reserved.)

Background: Advance care planning has been defined in an international consensus paper, supported by the European Association for Palliative Care. There are concerns that this definition may not apply to dementia. Moreover, it is not informed by input from people with dementia., Aim: To gather the perspective of the European Working Group of People with Dementia and their supporters on how advance care planning is defined and develop recommendations for changes to the definition., Design: An in-depth qualitative study was conducted, analysing online focus groups and interviews using thematic analysis., Setting/participants: We included 12 people with dementia and 9 supporters., Results: Participants suggested several changes to the current advance care planning definition: mentioning people with decreasing decisional capacity; better reflecting the role of family and/or trust-based relationships; reducing focus on end-of-life/medical decisions; strengthening focus on social aspects of care. Elements of the current definition that participants suggested keeping and highlighting include the framing of advance care planning as a continuous process, that is also optional; mention of communication next to documentation of decisions; and the importance of proxy decision makers. Based on this input, we developed three overarching and 16 specific recommendations for a modified definition of advance care planning that is inclusive of people with dementia., Conclusions: The perspectives of the European Working Group of People with Dementia and their supporters highlighted the need for a person-centred and dementia-inclusive advance care planning definition. We provide tangible recommendations for future adaptations of the definition that reflect these perspectives., 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.

When patients lose decision-making capacity, others must make surrogate decisions on their behalf. What counts as a surrogate decision might seem self-evident. But as clinician-researchers in the field of advance care planning, we have found that it is not always so clear-cut. In this paper, we describe how and why this is a matter of concern, a novel approach for assessing whether a surrogate decision occurred, and findings from this assessment., 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.

Huntington's Disease (HD) is a complex neurodegenerative disorder, with a life expectancy 10-20 years after symptom onset which is usually in middle age. Symptoms of HD include physical deterioration, cognitive impairment and a high incidence of suicide and suicidal ideation, which may cause intolerable suffering. While the strong association between depression and other psychiatric manifestations with suicide is discussed, this paper explores whether suicide can ever be deemed rational. By the time a person with HD reaches an advanced and terminal stage, their decisionmaking capacity will be so impaired as to make them ineligible for Voluntary Assisted Dying (VAD) under all current and proposed legislation in Australia and New Zealand. Given that Advance Care Planning (ACP) can provide an opportunity to refuse all medical treatment, except palliative treatment, could this provide an acceptable alternative to suicide and VAD? Nurses need to consider these ethical dilemmas and remain informed on the debates. They may experience moral conflict when a person wishes to discuss their view on rational suicide or seek to implement refusal of treatment in an advanced care directive. They must be aware and consider how their professional obligations and personal opinions interact with this complex topic. [ABSTRACT FROM AUTHOR]

Objectives: Integrated respiratory and palliative care services for people with advanced lung disease provide disease-orientated care until the end of life, alongside symptom management and discussions about future care. This study aimed to explore patient, caregiver and general practitioner perspectives of an integrated respiratory and palliative care service, to understand which components of the service were considered valued and effective. Methods: We approached patients, caregivers and general practitioners, to participate in semi-structured phone interviews. A grounded theory approach guided data collection and qualitative analysis. Results: Between July and December 2019, 10 patients, eight caregivers and five general practitioners completed interviews. The overarching theme was that of valuing integrated care – the provision of disease-orientated care along with palliative care. Four other major themes emerged: Valuing communication and engagement between patient, caregiver and healthcare professionals – who spoke of 'growing this plan together'; the delivery of person-centred care – where physicians 'actually listen and you are not treated like a number'; the reality of action plan use in serious illness – while many found plans 'certainly' do help, others described when they were simply 'too ill to do the action plan'; and finally, divergent preferences for discussions about future care – while some patients felt this subject was 'better left alone', caregivers consistently reported their preference was to 'make a plan.' Conclusion: Consumer perspectives highlight the service was valued for delivering personalised care with high communication standards. Similar services should appreciate the usefulness and limitations of action plan use in advanced lung disease, and be sensitive to potential diverging preferences of the patient and caregiver when discussing future care. What is known about the topic? Integrated respiratory and palliative care services for people with advanced lung disease may improve quality of life and decrease acute healthcare utilisation and cost. What does this paper add? This paper adds to our understanding of patients', caregivers' and general practitioners' perspectives of this integrated care model. Participants highly valued this integrated service for providing person-centred care. Participants outlined both the effectiveness and limitations of action plan use in advanced lung disease, and of diverging preferences between patients and caregivers for discussions about future care. What are the implications for practitioners? The integration of disease-orientated care along with the provision of palliative care is highly valued from a consumer perspective. [ABSTRACT FROM AUTHOR]

Advance care planning is considered an important issue in end‐of‐life care for older adults. The ongoing COVID‐19 pandemic has interrupted the healthcare system and end‐of‐life care tremendously. This review aimed to explore available articles on advance care planning amid the pandemic and analyze qualitatively. PubMed and Google Scholar were searched on February 2021 using the relevant keywords. Retrieved articles were screened applying inclusion criteria. Any article describing advance care planning during the COVID‐19 era was included. A qualitative content analysis was conducted. In total, 20 articles incorporating 5542 participants from five countries were included. Among the articles, eight were primary studies and the rest were perspective papers or secondary analysis. From the qualitative content analysis six major themes emerged namely palliative care, lack of coordination among acute care, hospital palliative care, and long‐term care, community‐based advance care planning, real‐time dissemination of scientific information on the regional pandemic situation, online system and legislation. The COVID‐19 pandemic had decreased the uptake of advance care planning. Findings of the review suggested simplification of the procedure regarding advance care planning, implementation of community‐based advance care planning and utilization of online resources to enhance the process. Geriatr Gerontol Int 2021; 21: 779–787. [ABSTRACT FROM AUTHOR]

The registered nurse has crucial preventative, therapeutic, sociocultural, and advocacy roles in promoting quality holistic patient-centred palliative care. This paper examines, describes, and analyses this multifaceted role from an antipodean perspective. We conducted systematic searches using PubMed, Google Scholar, government guidelines, authoritative body regulations, quality control guidelines, and government portals pertaining to palliative care nursing in Australia. This paper relies upon the information garnered from publications, reports, and guidelines resulting from these searches and analyses. The fundamental principles and guiding values of palliative care (and nursing) and the raison d'etre for palliative care as a discipline are underscored and expanded on. Australian Clinical Practice Guidelines (CPGs) pertaining to palliative end-of-life (EOL) nursing care and associated services are discussed. The relevant NMBA nursing standards that RNs need to have to administer opioids/narcotics in palliative care are summarised. The identification of patients who need EOL care, holistic person-centred care planning for them, and consultative multidisciplinary palliative clinical decision making are discussed in the palliative care context. Several components of advance care planning apropos health deterioration and conflicts are discussed. Several aspects of EOL care, especially palliative nursing care, are analysed using research evidence, established nursing and palliative care standards, and the Australian EOL CPGs. [ABSTRACT FROM AUTHOR]

Background: Given the globally ageing population, care homes have an important role in delivering palliative and end-of-life care. Advance care planning (ACP) is promoted to improve the quality of end-of-life care in this setting. While many professionals can be involved in ACP, little is known about what influences multi-professional involvement and how multi-professional working impacts the ACP process in the UK. This study investigated multi-professional practice in relation to ACP in nursing homes., Design and Methods: An ethnography was undertaken in two UK nursing homes using multiple methods of data collection: observations, interviews and document review. Participants included the following: nursing home residents (n = 6), relatives (n = 4), nursing home staff (n = 19), and visiting health and social care professionals (n = 7). Analysis integrated thematic analysis, mapping of resident ACP trajectories and documentary analysis., Findings: This paper suggests that multi-professional and relatives' involvement in ACP was disjointed. Continuity and coordination were disrupted by misalignment of visiting professional and nursing home organisational structures. Findings show a 'knotworking' approach to teamwork and power imbalance between nursing home staff and visiting professionals, such as general practitioners. While residents wished their relatives to be involved in their ACP, this was not formally recognised, and limited support existed to facilitate their involvement., Conclusion: The structure and organisation of multi-professional and relatives' involvement in ACP led to fragmentation of the process. This marginalised the voice of both the resident and nursing home staff, thereby limiting ACP as a tool to enhance quality of end-of-life care., (© The Author(s) 2023. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Purpose: This study aimed to explore the experiences of patients with advanced cancer with Advanced care planning (ACP) communication and drawing up a palliative plan in primary healthcare settings in Norway., Methods: In this exploratory qualitative study, data were collected using semi-structured interviews with five patients with cancer who had undergone ACP and had a palliative care plan., Results: The result shows three main themes with subthemes; (1) The difficult ACP conversation about cancer and death was tough, painful, and considered a "taboo." The patients wished they had been prepared for the conversation and had it in their own homes. (2) Interactions with the doctor/nurse about the palliative care plan helped the patients feel valued and involved and brought their wishes into focus. The next of kin was present but not involved in the process. (3) Having a palliative plan was meaningful for the patients; they felt safe, and it gave them a sense of security., Conclusions: Patients with advanced cancer in a home setting in Norway experienced ACP for the preparation of a palliative plan as a process from difficulty to meaning. In this process, the context and interactions provided by the doctor/nurse and their competency in communicating with the patients and involving them as persons was important. The palliative plan gave the patients a sense of meaning, control, and safety connected to the time for the end of life., 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 © 2023. Published by Elsevier Ltd.)

Background: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence., Methods: The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence., Results: The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence., Conclusions: The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations., (© 2023. The Author(s).)

Palliative care: •is an approach that improves the quality of life of patients and their families who are facing problems associated with life-threatening illness or frailty; •is not restricted to terminal care; •is started early in the trajectory of all life-threatening illnesses (oncological and non-oncological); •requires specific knowledge, communication skills and attitude, and an interdisciplinary approach; •requires a systematic approach for complaints and problems in all domains; •addresses all domains: physical, psychological, social and spiritual; •looks for a balance between disease-oriented and symptom-oriented treatment; •includes advance care planning and a careful exploration of a death wish. In this paper all these aspects are explored. Sources of information and possibilities for advice in complex situations are provided.

Left ventricular assist devices (LVADs) have become an increasingly common advanced therapy in patients with severe symptomatic heart failure. Their unique nature in prolonging life through incorporation into the circulatory system raises ethical questions regarding patient identity and values, device ontology, and treatment categorization; approaching requests for LVAD deactivation requires consideration of these factors, among others. To that end, clinicians would benefit from a deeper understanding of: 1) the history and nature of LVADs; 2) the wider context of device deactivation and associated ethical considerations; and 3) an introductory framework incorporating best practices in requests for LVAD deactivation (specifically in controversial situations without obvious medical or device-related complications). In such decisions, heart failure teams can safeguard patient preferences without compromising ethical practice through more explicit advance care planning before LVAD implantation, early integration of hospice and palliative medicine specialists (maintained throughout the disease process), and further research interrogating behaviors and attitudes related to LVAD deactivation., Competing Interests: Funding Support and Author Disclosures The authors have reported that they have no relationships relevant to the contents of this paper to disclose., (Copyright © 2023 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.)

Advance care planning (ACP) is crucial in supporting optimal, patient-centered care for adolescents and young adults (AYAs) with life-limiting illnesses and can reduce unwanted outcomes at end-of-life. While several ACP tools and interventions have been designed for AYAs, most of these were developed in the United States of America (USA). This paper describes a study designed to adapt the AYA ACP tool, Voicing My CHOiCES (VMC), for the Australian population. A 2-stage mixed methods approach was used. Stage 1 involved a multiperspective interview to determine changes for the new Australian VMC. Participants were AYAs between the ages of 15 to 25, healthcare professionals, and parents. For each section, participants responded to questions targeting the helpfulness and usefulness of the items as well as open-ended questions about any suggested content or formatting changes. Stage 2 used think-aloud interviews asking AYA cancer patients and survivors aged between 15 and 39 years to respond to proposed changes for the Australian VMC. Stage 1 participants suggested changes to all pages of VMC, with proposed changes being based around language, content, and format. Stage 2 participants qualitatively confirmed the acceptability of these changes. Our data suggests that even between similar Western cultures, significant adaptations can be made to make ACP tools more culturally appropriate. More research is needed to further adapt ACP tools like VMC for culturally and linguistically diverse groups and to ensure these tools can be accessed by all AYAs with life-limiting illness., 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 © 2023 Elsevier Inc. All rights reserved.)

Background: This paper aimed to describe the legal worries of Australian general practitioners (GPs) and nurses regarding end-of-life care provided in the aged care setting. Methods: An analysis of responses to the final, open-ended question of a cross-sectional online survey of GPs and nurses practising in aged care settings in Queensland, New South Wales and Victoria was undertaken. Results: Of the 162 GPs and 61 nurses who gave valid responses to the survey, 92% (151 GPs and 55 nurses) responded to the open-ended question. Participants identified concerns across all relevant areas of end-of-life law. The most common concerns were substitute decision-makers or family member(s) wanting to overrule an Advance Care Directive, requests for futile or non-beneficial treatment and conflict about end-of-life decision-making. Participants often also identified concerns about their lack of legal knowledge and their fear of law or risk related to both end-of-life care generally and providing medication that may hasten death. Conclusions: Australian GPs and nurses working in aged care have broad-ranging legal concerns about providing end-of-life care. Legal concerns and knowledge gaps identified here highlight priority areas for future training of the aged care workforce. The law supports good end-of-life clinical practice by facilitating health care that aligns with the values and goals of patients, including those residing in residential aged care facilities. GPs and nurses here reported broad-ranging legal concerns relevant to providing end-of-life care within aged care, including substitute decision makers/family members wanting to overrule Advance Care Directives, requests for futile or non-beneficial treatment and conflict about decision-making. Participants' concerns can inform end-of-life legal training for aged care GPs and nurses. [ABSTRACT FROM AUTHOR]

Primary care settings are ideal for initiating advance care planning (ACP) conversations and assessing palliative and supportive care needs. However, time constraints and a lack of confidence to sensitively and efficiently initiate such discussions are noted barriers. The Advance Project implemented a national multicomponent training package to support Australian general practice nurses (GPNs) to work with GPs to initiate ACP and palliative care conversations in their practice. This paper reports on semistructured interviews conducted with 20 GPNs to explore barriers and facilitators to implementing the Advance Project model. Participants identified a range of factors that affected implementation, including lack of time, limited support from colleagues, lack of knowledge about systems and funding processes in general practice and a need for better alignment of the Advance Project resources and practices with general practice information management platforms. Barriers related to professional roles, particularly the lack of clarity and/or limitations in the scope of practice of GPNs, highlighted the importance of defining and supporting the roles that different primary health practice staff could play to support implementation of the model. The findings underline the need for complementary training in the Advance Project model for GPs and practice managers to enable a team-based approach to implementation. Primary care professionals often report barriers to initiating advance care planning (ACP) and palliative care (PC), affecting patients' end-of-life care experiences. This paper provides evidence to suggest that nurses working in general practice can be trained and are willing to initiate ACP and PC. By understanding barriers and facilitators to early implementation of the Advance Project model through a theoretical lens, changes were identified that could lead to successful implementation of ACP/PC assessment tools in general practice settings. [ABSTRACT FROM AUTHOR]

Background and Aims: Shared decision making (SDM) and advance care planning (ACP) are important evidence and ethics based concepts that can be translated in communication tools to aid the treatment decision-making process. Although both have been recommended in the care of patients with risks of complications, they have not yet been described as two components of one single process. In this paper we aim to (1) assess how SDM and ACP is being applied, choosing patients with aortic stenosis with high and moderate treatment complication risks such as bleeding or stroke as an example, and (2) propose a model to best combine the two concepts and integrate them in the care process., Methods: In order to assess how SDM and ACP is applied in usual care, we have performed a systematic literature review. The included studies have been analysed by means of thematic analysis as well as abductive reasoning to determine which SDM and ACP steps are applied as well as to propose a model of combining the two concepts into one process., Results: The search in Medline, Cinahl, Embase, Scopus, Web of science, Psychinfo and Cochrane revealed 15 studies. Eleven describe various steps of SDM while four studies discuss the documentation of goals of care. Based on the review results and existing evidence we propose a model that combines SDM and ACP in one process for a complete patient informed choice., Conclusion: To be able to make informed choices about immediate and future care, patients should be engaged in both SDM and ACP decision-making processes. This allows for an iterative process in which each important decision-maker can share their expertise and concerns regarding the care planning and advance care planning. This would help to better structure and prioritize information while creating a trustful and respectful relationship between the participants. PROSPERO 2019. CRD42019124575., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Hong Kong is a well-developed city with outstanding healthcare services, leading to the highest life expectancy in the world. Paradoxically, the quality of end-of-life care in this city lagged behind that of many other high-income regions. Possibly, the advances in medicine contribute to the death denial culture, hindering communication about end-of-life care. This paper discusses challenges arisen due to poor public awareness and professional training and local initiatives to promote advance care planning in the community., (Copyright © 2023. Published by Elsevier GmbH.)

This paper aims to 1) describe current levels of Advance Care Planning (ACP) development since 2002 in Belgium, 2) report on challenges and opportunities to inspire other countries with similar contextual characteristics and 3) support further development of ACP practice and research in Belgium. To address these aims, we consulted local researchers, 12 domain experts and (grey) literature (regulatory documents, reports, policy documents and practice guidelines) on ACP, palliative care, and related healthcare topics. Since 2002, when the Patient's Right Law was passed in the federal Parliament, Belgium has had a specific medicolegal context for ACP. Initiatives to improve the uptake of ACP have been taken, e.g. standardised documentation, reimbursement codes for physicians provided by the government, and implementation of quality indicators in hospitals and nursing homes. Most of these initiatives are grassroots or predominantly oriented towards a single group of professions, e.g. general practitioners, disregarding the role that other professions can play. The patient groups most often targeted are those with cancer and older adults. Limited but growing attention is given to those with low health literacy or other minority groups. Main barriers to ACP in Belgium are: no unified platform to exchange outcomes of ACP discussions or advance directives between healthcare professionals and though efforts are made, ACP is still predominantly oriented towards documentation., (Copyright © 2023. Published by Elsevier GmbH.)

Advance Care Planning is a process by which a patient's health care preferences are established in advance in the event that he or she become temporarily or constantly unable to make decisions for themselves in the future. It is also applied early in emergencies, in intensive care treatment, and after surgery where one's ability to decide is reduced. In Ecuador there is currently no legislation on this subject, however, the National Health Bioethics Commission validated and published the document "Advance Living Will" and as an important advance issued a favorable criterion before the National Assembly for it to be incorporated into the Organic Health Code, the concept, regulations, and the text of Vital Advance Will. Instead of, its use is currently not in force. However, the compliance criteria have been established in the Palliative Care Standard since 2015, but are not yet implemented. There are few studies that demonstrate its application in the country, so it is important to know the cultural and social characteristics of both health professionals and patients, which limit its application., Competing Interests: Conflict of 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 © 2023. Published by Elsevier GmbH.)

Background: Advance Care Planning (ACP) helps people discuss personal values, goals and priorities regarding future care with family and professionals. It can support care coordination and guide decision-making as health deteriorates. However, uptake remains low internationally. Poor communication and information due to Covid-19 pressures exacerbated public and professional criticism and concerns. Recent recommendations highlight the importance of understanding and addressing public perceptions about ACP combined with person-centred approaches to ACP conversations., Objectives: To explore public perceptions of ACP to inform increased public engagement and empowerment., Methods: Joanna Briggs Institute methodology was applied in a rapid scoping review. Three databases (Embase, MEDLINE, APA PsycInfo) were searched for English language reviews and primary or secondary research studies from 2015 to 2021. Following title and abstract review, two researchers screened full-text articles and performed data extraction independently using Covidence. Charted data were analysed for themes and subthemes starting with two recent published reviews. Emerging findings were added and data synthesis reviewed by the research team, including public-patient representatives, to achieve consensus., Results: Of 336 studies, 20 included reviews and research papers represented diverse public views, situations and contexts. Studies found poor public knowledge of ACP and widespread perceptions of confusing or accessible information. Multiple reports described little personal relevance, perceived risks of emotional distress, fears, mistrust and misconceptions about the purpose and scope of ACP. Studies identified public concerns stemming from reluctance to discuss death and dying despite this being just one aspect of ACP. Research with minority communities and marginalised groups found intensified concerns. Some studies cited people who valued maintaining autonomy by expressing their goals and preferences., Conclusions: Studies reviewed found many members of the public had negative or unclear perceptions of ACP. Improved knowledge and understanding appeared to influence perceptions of ACP but were not considered sufficient to change behaviours. The research provided valuable insights from members of the public that could inform current professional and societal debates about the future of ACP. Findings point to a need for novel approaches to ACP public information and involvement whilst bearing in mind societal norms, diverse cultures and contexts., (© 2023. The Author(s).)

Background: Parents of babies diagnosed with life limiting conditions in the perinatal period face numerous challenges. Considerations include the remainder of the pregnancy, delivery of the baby and decisions around care in the neonatal period. Aim: To increase understanding of how parents experience the diagnosis of a life-limiting or life-threatening condition, during pregnancy and following the birth of their baby, by answering the question: 'what is known about the perinatal experiences of parents of babies with a life-limiting or life-threatening diagnosis?' Design: A meta-ethnography was conducted to synthesise findings from existing qualitative evidence. Data sources: British Nursing Database, CINAHL, Medline, PsycINFO and Embase databases were searched in January 2023. Findings: Relationships between parents and their families and friends, and with professionals influence the needs and experiences of parents, which oscillate between positive and negative experiences, throughout parents' perinatal palliative care journey. Parents highlighted the need for control and a sense of normality relating to their parenting experience. Validation was central to the experience of parents at all stages of parenthood. Relationships between the parent and the baby were unwavering, underpinned with unconditional love. Conclusion: Professionals, family members and friendship groups influence the experience, validating parents and their baby's identity and supporting parents in having a sense of control and normality by demonstrating empathy, and providing time and clear communication. [ABSTRACT FROM AUTHOR]

Some have questioned the extent of medical intervention at the end of people's lives, arguing that we often intervene in the dying process in ways which are harmful, inappropriate, or undignified. In this paper, I argue that over‐treatment of dying is a function of the way in which clinicians manage epistemic risk—the risk of being wrong. When making any scientific decision—whether making inferences from empirical data, or determining a plan for medical treatment—there is always a degree of uncertainty: in other words, there is always a possibility we make the wrong decision. As philosophers of science such as Justin Biddle have argued, there is no way to resolve epistemic risk without weighing up the consequences of being wrong. This requires us to draw upon other, non‐epistemic considerations, like social and ideological values; as such, questions of epistemic risk cannot be answered solely with reference to epistemic considerations such as evidence. In this paper, I explore how epistemic risk arises in end‐of‐life care, highlighting how clinicians face epistemic risk when diagnosing patients as dying and when determining whether a particular treatment is futile. I argue that there is no clear cut‐off between reversible and irreversible illness, nor between useful and futile treatment. Clinicians who diagnose a patient as dying thus risk failing to provide treatment which could be beneficial; conversely, clinicians who determine that a patient has a potentially reversible illness risk subjecting them to futile treatment that may be painful or distressing. Having outlined where and how epistemic risk arises in end‐of‐life care, I turn my attention to the values and norms which shape clinicians' management of epistemic risk. I highlight how societal attitudes towards death, the medicalisation of dying, and the practice of defensive medicine all contribute to clinicians erring on one side of epistemic caution, minimising the risk that they miss or fail to treat illness. By applying the concept of epistemic risk to end‐of‐life care, I offer a novel lens through which to view medical decision‐making in dying patients. [ABSTRACT FROM AUTHOR]

Palliative care is recommended for all people with dementia from diagnosis through end-of-life. However, palliative care needs and effective elements of palliative care are not well-defined for the earlier stages of dementia. To systematically map current research on palliative care early in the disease trajectory of dementia. Scoping review of scientific literature. PubMed, CINAHL, EMBASE, Cochrane, PsycINFO, Web of Science. We included studies published in English over the last decade (through March 2022) that focused on palliative care in early stages of dementia and targeted outcomes in palliative care domains. Two authors independently screened abstracts and full texts and scored the quality of included studies using tools by the Joanna Briggs Institute. Among the 77 papers reviewed, few addressed early stages of dementia specifically. We found that: 1) While "early" palliative care was not well-defined in the literature, evidence indicated that palliative care needs were present at or before diagnosis and across the trajectory. Notable opportunities for palliative care arise at 'tipping points' (i.e., when symptoms, functional status, or caregiving needs change). 2) Palliative care needs in early dementia include advocacy for goal-aligned care in the future, reassurance against the threat of negligence and abandonment by caregivers, planning for future scenarios of care (practical, individual, and relational needs), and establishing of long-term relationships with providers entrusted for care later in disease. 3) Elements of effective palliative care in early dementia could include dementia-specific ACP and goals of care discussions, navigation for building a network of support, provision of tools and resources for family, tailored care and knowledge of the person, and well-prepared dementia-care providers. The scarcity of palliative care studies aimed at early disease indicates a gap in the evidence in dementia care. The literature on palliative care in early dementia is sparse. Future studies should focus on assessment tools for optimizing timing of palliative care in early dementia, gaining better understanding of patient and family needs during early phases of disease, and providing training for providers and families in long-term relationships and communication around goals of care and future planning. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is a way of applying modern medicine to the principle of patient autonomy and ensuring that patients receive medical care that is consistent with their values, goals and preferences. Robust evidence supports the benefits of ACP, but it remains an underutilized resource in most countries. This paper goes from the naïve point of view, and seeks to identify the barriers and facilitators to implementation in unfamiliarized contexts and in a whole system approach involving the clinical, institutional and policy level to improve the implementation of ACP., Methods: Qualitative interviews were chosen to enable an explorative, flexible design. Qualitative interviews were conducted with 40 health care professionals and chief physicians in hospitals and in municipalities. The thematic analysis was done following Braun and Clarke's strategy for thematic analysis., Results: The main reported barriers were the lack of time and space, a lack of culture and leadership legitimizing ACP, lack of common communication systems, and unclear responsibility about who should initiate, resulting in missed opportunities and overtreatment. Policy development, public and professional education, and standardization of documentation were reported as key to facilitate ACP and build trust across the health care system., Conclusions: Progressively changing the education of health professionals and the clinical culture are major efforts that need to be tackled to implement ACP in unfamiliarized contexts, particularly in contexts where patient's wishes are not legally binding. This will need to be tackled through rectifying the misconception that ACP is only about death, and providing practical training for health professionals, as well as developing policies and legislation on how to include patients and caregivers in the planning of care., (© 2023. The Author(s).)

Context: Religiosity/spirituality/religious-spiritual coping (RS) are resources used by cancer patients with cancer to help cope with the disease and may influence the preference and receipt of end-of-life (EOL) treatment., Objectives: To examine the relationship between RS and the EOL care preferred or received by cancer patients., Methods: This review protocol is registered on (International Prospective Register of Systematic Review, CRD42021251833) and follows the recommendations of the preferred reporting items for systematic reviews and meta-analyses checklist. Embase, Proquest, PubMed, Scopus, and Web of Science databases were consulted. Google Scholar was consulted for additional publications and gray literature. Quantitative studies including adults with any cancer type/stage were eligible. The paper selection was performed by two independent reviewers; the methodological quality was measured using the Newcastle Ottawa scale., Results: Seventeen studies were included in the review. In general, RS is related to the preference or receipt of aggressive EOL care and with less advance care planning. Spiritual care by the medical team is related to higher referral to hospice and less aggressive care; in contrast, high spiritual support from religious communities is associated with less hospice and more aggressive care. Religious denominations influenced health care preferences, as Catholics were less likely to sign a do-not-resuscitate order and Buddhists or Taoists received more aggressive interventions at the EOL. Most studies (70%) were of high quality according to the Newcastle Ottawa scale., Conclusion: RS is associated with more aggressive EOL treatments, as well as with lower rates of ACP in cancer patients. On the other hand, spiritual care provided by the medical team seems to be associated with less aggressive EOL care., Competing Interests: Disclosures and Acknowledgments BSC received a PhD scholarship provided by Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES). All authors declare no conflict of interest., (Copyright © 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Although advance care planning (ACP) for persons with dementia (PWD) can promote patient-centered care by aligning future healthcare with patient values, few PWD have documented ACPs for reasons incompletely understood. The objective of this paper is to characterize the perceived value of, barriers to, and successful strategies for completing ACP for PWD as reported by frontline clinicians., Methods: Qualitative study using semi-structured interviews (August 2018-December 2019) with clinicians (physicians, nurse practitioners, nurses, social workers) at 11 US health systems. Interviews asked clinicians about their approaches to ACP with PWDs, including how ACP was initiated, what was discussed, how carepartners were involved, how decision-making was approached, and how decision-making capacity was assessed., Results: Of 75 participating generalist and specialty clinicians from across the United States, 61% reported conducting ACP with PWD, of whom 19% conducted ACP as early as possible with PWD. Three themes emerged: value of early ACP preserves PWD's autonomy in cases of differing PWD carepartner values, acute medical crises, and clinician paternalism; barriers to ACP with PWD including the dynamic and subjective assessment of patient decision-making capacity, inconsistent awareness of cognitive impairment by clinicians, and the need to balance patient and family carepartner involvement; and strategies to support ACP include clarifying clinicians' roles in ACP, standardizing clinicians' approach to PWD and their carepartners, and making time for ACP and decision-making assessments that allow PWD and carepartner involvement regardless of the patients' capacity., Conclusions: Clinicians found early ACP for PWD valuable in promoting patient-centered care among an at-risk population. In sharing their perspectives on conducting ACP for PWD, clinicians described challenges that are amenable to changes in training, workflow, and material support for clinician time. Clinical practices need sustainable scheduling and financial support models., (© 2022 The American Geriatrics Society.)

We comment on Dr. Terman's considerations on the moral justification of ceasing assisted feeding and hydration for people with advanced dementia. The core idea of his paper is that an advance directive can solve future dilemmas regarding assisted feeding. We submit that this static instrument is unfit for the complex and dynamic nature of assessing how to deal with refusals to eat, in particular for people with dementia. It overvalues the past in relation to the present situation and leaves no room for the possibility of changing wishes. Moreover, the perspectives of professional caregivers and families are not addressed because the focus is entirely on individual autonomy in early dementia. Multiple perspectives should be considered in interpreting directives and the actual situation in light of the patient's view of life in order to realistically account for what is morally justifiable in care in advanced dementia. [ABSTRACT FROM AUTHOR]

The population is aging, with frailty emerging as a significant risk factor for poor outcomes for older people who become acutely ill. We describe the development and implementation of the Frail Older Persons' Collaborative Program, which aims to optimise the care of frail older adults across healthcare systems in Queensland. Priority areas were identified at a co-design workshop involving key stakeholders, including consumers, multidisciplinary clinicians, senior Queensland Health staff and representatives from community providers and residential aged care facilities. Locally developed, evidence-based interventions were selected by workshop participants for each priority area: a Residential Aged Care Facility acute care Support Service (RaSS); improved early identification and management of frail older persons presenting to hospital emergency departments (GEDI); optimisation of inpatient care (Eat Walk Engage); and enhancement of advance care planning. These interventions have been implemented across metropolitan and regional areas, and their impact is currently being evaluated through process measures and system-level outcomes. In this narrative paper, we conceptualise the healthcare organisation as a complex adaptive system to explain some of the difficulties in achieving change within a diverse and dynamic healthcare environment. The Frail Older Persons' Collaborative Program demonstrates that translating research into practice and effecting change can occur rapidly and at scale if clinician commitment, high-level leadership, and adequate resources are forthcoming. What is known about the topic? Providing frailty-focused care can improve outcomes, particularly by avoiding unnecessary admissions to hospital and reducing hospital-acquired complications, such as delirium and functional decline. Several evidence-based interventions exist that apply to specific points in the trajectory of older frail patients from hospital presentation to discharge and beyond, but these are not generally well integrated across the entire patient journey. What does this paper add? This paper describes a whole-of-healthcare system approach to improving care and outcomes for frail older people in Queensland. Rather than developing new care initiatives, the approach was taken to invest in pre-existing evidence-based interventions developed and validated in Queensland clinical settings and scale them across the state over 3 years. What are the implications for practitioners? This state-wide scale-up of evidence-based interventions has profiled how the healthcare system can be redesigned to implement models that better support vulnerable older people. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is influenced by several factors (e.g., patient's readiness to engage, clinician's skills, and the cultural environment). Availability of reliable and valid self-reported measures of the ACP domains is crucial, including cross-cultural equivalence., Aim: To culturally adapt into Italian the 19-item Quality of Communication (QOC) and the 4-item ACP Engagement (4-item ACP-E) questionnaires., Methods: We translated and culturally adapted the two questionnaires and produced a significant other (SO) version of the QOC (QOC-SO). Each questionnaire was field tested via cognitive interviews with users: nine patients (QOC, 4-item ACP-E) and three SOs (QOC-SO) enrolled at three palliative care services., Results: We made minor changes to 5/19 QOC items, to improve clarity and internal consistency; we changed the response option 'didn't do' into 'not applicable'. Finally, we slightly revised the QOC to adapt it to the paper/electronic format. QOC debriefing revealed that the section on end of life was emotionally challenging for both patients and SOs. We simplified the 4-item ACP-E layout, added a sentence in the introduction, and revised the wording of one item, to improve coherence with the Italian ACP legislation. ACP-E debriefing did not reveal any major issue., Conclusions: Results were satisfactory in terms of semantic, conceptual and normative equivalence of both questionnaires. Acceptability was satisfactory for the 4-item ACP-E, while findings of the QOC cognitive debriefing informed a major amendment of a pilot trial protocol on ACP in multiple sclerosis (ConCure-SM): use of the interviewer version only, in an adaptive form. Psychometric testing of both questionnaires on a large, independent sample will follow., Competing Interests: A.S. reports grants from the Italian Multiple Sclerosis Foundation (FISM) and the European Academy of Neurology, during the conduct of the study; she serves as board member for Merck Serono, and received personal fees from Almirall and Merck Serono, outside the submitted work. This does not alter our adherence to PLOS ONE policies on sharing data and materials., (Copyright: © 2023 De Panfilis et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Aims: This study aimed to assess how an advance care planning training program affected advanced practice nursing students' knowledge, confidence and perception of end-of-life care in South Korea., Background: Effective communication between healthcare providers, patients and their families is one of the most important components of quality end-of-life care. However, nurses in South Korea may feel uncomfortable helping patients and families with advance care planning because of the cultural taboo against talking about dying., Design: A mixed-method design was used with data obtained from self-administered questionnaires at the onset and end of the advance care planning training program and qualitative data from participant feedback after the program., Methods: Data collected from 65 advanced practice nursing students who participated in advance care planning training programs in June-July 2020 and 2021, conducted as part of a graduate clinical practice course, were analyzed. Data were originally collected to examine students' course outcomes. A training program was provided to advanced practice nursing students to improve their knowledge, confidence and perception in advance care planning conversations with their patients. The program comprised three sessions: online lectures, face-to-face simulations and discussions on advance care planning and ethical issues. Changes in advance care planning knowledge, confidence in supporting patients' advance directives, perceived nursing roles in end-of-life treatment decisions and perception of a good death were examined before and after the training., Results: There were statistically significant increases in participants' advance care planning knowledge, confidence in supporting patients' advance directives and perception of the active role of nurses in patients' end-of-life treatment decisions after the training., Conclusions: The results indicate the effects of training programs on advanced practice nursing students' knowledge, confidence and perception of advance care planning communication. They also provide evidence about what contents and methods can be helpful in developing end-of-life care training for advanced practice nursing students., 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 © 2023 Elsevier Ltd. All rights reserved.)

Advance care planning (ACP) for people with dementia, as with other diseases, is a necessary process to realize medical treatment and care in the final stage of a person's life. On the other hand, dementia, a disease that is expected to make it difficult for people to make decisions on their own in the future, has a long course, and is characterized by uncertainty regarding the course of the disease, which may also be a limiting factor in the implementation of ACP for people with dementia. On the other hand, the uncertainties may also be a reason for implementing ACP. This paper reviews reports on ACP initiatives for people with dementia from many countries and presents their characteristics, cultural and customary influences, effects, facilitating and inhibiting factors, and recommendations for implementation, with the aim of promoting future ACP initiatives for people with dementia. The aim of the study was to promote future ACP initiatives for people with dementia.

Background: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. Aim: To develop a multidimensional international palliative care goals model in dementia for use in practice. Design: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified. Setting/participants: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study. Results: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss−person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves. Conclusion: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research. [ABSTRACT FROM AUTHOR]