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The American Society for Parenteral and Enteral Nutrition (ASPEN) Position Paper focus is on applying the 4 ethical principles for clinician's decision-making in the use of artificially administered nutrition and hydration (AANH) for adult and pediatric patients. These basic principles are (1) autonomy, respect the patient's healthcare preferences; (2) beneficence, provide healthcare in the best interest of the patient; (3) nonmaleficence, do no harm; and (4) justice, provide all individuals a fair and appropriate distribution of healthcare resources. Preventing and resolving ethical dilemmas is addressed, with an emphasis on a collaborative, interdisciplinary approach. Optimizing early communication and promoting advance care planning, involving completion of an advance directive, including designation of a surrogate decision-maker, are encouraged. Clinicians achieve respect for autonomy when they incorporate the patient, family, community, country, geographical, and presumed cultural values and religious belief considerations into ethical decision-making for adults and children with a shared decision-making process. These discussions should be guided by the 4 ethical principles. Hospital committees and teams, limited-time trials, clinician obligation with conflicts, and forgoing of AANH are addressed. Specific patient conditions are addressed because of the concern for potential ethical issues: coma, decreased consciousness, and dementia; advanced dementia; cancer; eating disorders; and end-stage disease/terminal illness. Incorporated in the Position Paper are ethical decisions during a pandemic and a legal summary involving ethical issues. International authors presented the similarities and differences within their own country or region and compared them with the US perspective., (© 2021 American Society for Parenteral and Enteral Nutrition.)

Background: Digital tools to document care preferences in serious illnesses are increasingly common, but their impact is unknown. We developed a web-based advance directive (AD) featuring (1) modular content eliciting detailed care preferences, (2) the ability to electronically transmit ADs to the electronic health record (EHR), and (3) use of nudges to promote document transmission and sharing., Objective: To compare a web-based, EHR-transmissible AD to a paper AD., Methods: Patients with gastrointestinal and lung malignancies were randomized to the web or paper AD. The primary outcome was the proportion of patients with newly documented advance care plans in the EHR at 8 weeks. Secondary outcomes assessed through an e-mail survey included the change in satisfaction with end-of-life plans, AD acceptability, and self-reported sharing with a surrogate., Results: Ninety-one participants were enrolled: 46 randomly allocated to the web AD and 45 to paper. Thirteen patients assigned to web AD (28%) had new documentation versus 7 (16%) assigned to paper ( P = .14). Adjusted for demographic factors and primary diagnosis, the odds ratio of new documentation with web AD was 3.7 (95% CI: 0.8-17.0, P = .10). Satisfaction with advance care planning and AD acceptability were high in both groups and not significantly different. Among patients completing web ADs, 79% reported sharing plans with their caregivers, compared with 65% of those completing paper ADs ( P = .40)., Conclusion: Web-based ADs hold promise for promoting documentation and sharing of preferences, but larger studies are needed to quantify effects on these intermediate end points and on patient-centered outcomes.

Survival prospects in adults with congenital heart disease (CHD), although improved in recent decades, still remain below expectations for the general population. Patients and their loved ones benefit from preparation for both unexpected and predictable deaths, sometimes preceded by a prolonged period of declining health. Hence, advance care planning (ACP) is an integral part of comprehensive care for adults with CHD. This position paper summarizes evidence regarding benefits of and patients' preferences for ACP and provides practical advice regarding the implementation of ACP processes within clinical adult CHD practice. We suggest that ACP be delivered as a structured process across different stages, with content dependent upon the anticipated disease progression. We acknowledge potential barriers to initiate ACP discussions and emphasize the importance of a sensitive and situation-specific communication style. Conclusions presented in this article reflect agreed expert opinions and include both patient and provider perspectives., (Published on behalf of the European Society of Cardiology. All rights reserved. © The Author(s) 2020. For permissions, please email: journals.permissions@oup.com.)

As the aging population, including frail older people, continues to grow in Mainland China, quality of life and end-of-life care for frail older people has attracted much attention. Advance care planning is an effective way to improve end-of-life care for people with advanced diseases, and it is widely used in developed countries; however, it is a new concept in Mainland China. The effects of advance care planning and its acceptability in Mainland China are uncertain because of its culture-sensitive characteristics. The objective of this article is to discuss the serious social issue of caring for frail older people and illustrate the possibility of implementing advance care planning in nursing homes in Mainland China through a review of relevant literature, which will focus on legislation, healthcare system engagement, public engagement, and cultural issues. Recommendations to promote and implement advance care planning include choosing nursing homes as a proper setting, establishing an ethical climate, and enhancing public awareness.

Background: With the ageing of the population intensifying, the implementation of advance care planning (ACP) in nursing facilities is especially crucial., Objective: This study aimed to search and synthesise qualitative studies exploring the perspectives of older people in nursing facilities about ACP discussions., Methods: The researchers conducted searches of PubMed, Web of Science, Cochrane Library, CNKI, Wanfang, VIP and CBM between the time of inception and October 2023. The PICo model was used to build the inclusion and exclusion criteria. Following the inclusion and exclusion criteria, two researchers screened the literature, extracted data and then integrated the literature using the integrative synthesis., Results: A total of 12 articles were included, 47 themes were extracted, and three research integrations were summarised: (1) understanding of ACP; (2) attitude towards ACP; and (3) influencing factors of participation in ACP., Conclusion: This study offers guidance for the future development of ACP on the participation of older people in nursing facilities., Implications for Practice: It is necessary to strengthen the education of ACP-related knowledge in conjunction with the cultural characteristics of different countries, to provide interdisciplinary support for older people through professional teamwork and to promote the development and improvement of ACP-related practices., (© 2024 John Wiley & Sons Ltd.)

Background: Advance care planning (ACP) aids can help prepare patients, family members, and physicians for in-the-moment medical decision-making. We wished to describe the content and approach of paper-based ACP aids in order to characterize existing aids and inform the development of a new ACP aid., Methods: Paper-based ACP aids were identified through an environmental scan and screened for eligibility. ACP conceptual frameworks and data were gathered via stakeholder engagement and used to inform the coding framework that two investigators used to independently code each aid. A directed content analysis was conducted on these eligible aids. Aids were categorized through a deliberative process with an investigator abstracting general information for each aid., Results: Fifteen aids met the eligibility criteria. They ranged in length from 6 to 78 pages with the average aid written at an eighth-grade reading level. The content analysis revealed that many aids encouraged choosing a surrogate decision maker and informed users about legal medical documents. Fewer than half of the aids facilitated patient clarification of values regarding quality of life issues. The authors identified and termed the following three categories of aids: informative; semi-action oriented; and action-oriented. It was often unclear whether patients contributed to the development or testing of the ACP aids reviewed., Conclusions: Most existing paper-based ACP aids address legal matters such as completing an advance directive. Only a minority elicited patient values and it was unclear whether any were developed in partnership with patients. Future development of ACP aids should account for patient preferences with a goal of supporting in-the-moment medical decision-making.

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: Through advocacy initiatives such as roadshows during "National ACP Week", the Agency for Integrated Care (AIC) had increased advance care planning (ACP) engagement since 2011. Project Happy Apples (PHA), a community initiative project led by medical students from the National University of Singapore, also conducted a public exhibition to raise ACP awareness during this period. This study aimed to investigate and identify predictors of attitudes towards ACP documentation among 'ACP Week' respondents which may be used to formulate strategies to increase ACP documentation in Singapore., Methods: A cross-sectional study on ACP documentation attitudes of 262 respondents during local roadshows were conducted. Multiple logistic regression models were built to investigate the associations between demographic variables and attitudes toward ACP documentation., Results: The mean age was 43.5 years (SD = 17.4), 79 (30.15%) were males and 49 (18.7%) were healthcare professionals (HCP). 117 (44.66%) respondents had prior experience with serious illness and 116 (44.27%) had heard of ACP. Age was a significant predictor of readiness to sign official papers naming nominated healthcare spokesperson (NHS) (OR = 1.04, 95%CI: 1.02-1.07). Experience with serious illness was a significant predictor of readiness to discuss end-of-life (EOL) care with healthcare professionals (HCP) (OR = 3.65, 95%CI: 1.36-11.61). Being female was a significant predictor for readiness to speak to their nominated healthcare spokesperson about EOL care (OR = 7.33, 95%CI: 2.06-46.73). Subgroup analyses revealed that those aged 20-39 were less likely to speak to their healthcare professional about or sign official papers regarding EOL care. We also found that being a healthcare professional does not necessitate better or worse attitudes., Conclusion: Advocacy programs tailored to targeting respondents of different age groups and prior experience with serious illness may improve the efficacy of advocacy efforts., (© 2024. The Author(s).)

Within the healthcare settings of the United States Department of Veterans Affairs (VA), one patient-centered intervention, Advance Care Planning via Group Visits (ACP-GV), engages veterans and those they trust in advance care planning (ACP) by facilitating a discussion that encourages participants to plan for future healthcare needs. ACP-GV is a one-hour, single session group intervention facilitated by a trained clinical professional (e.g., physician, nurse, social worker, psychologist, chaplain) and delivered in a healthcare or community-based setting. Using reporting guidelines for group-based and educational interventions, this paper aims to describe the ACP-GV Facilitator Training used to prepare clinical professionals to offer the ACP-GV intervention to participants. We provide health professional students and early career health professionals with an overview of the training and key tips for using group modalities in the clinical setting. Although the training is initially directed towards health professionals who are learning to offer ACP-GV for the first time, our tips for teaching also focus on and extend to facilitating ACP-GV directly with veterans, caregivers, and those they trust. The ACP-GV Facilitator Training is sequential in that it expects clinicians to first learn the required educational content and how to plan a group, then it engages clinicians in practicing group facilitation skills. At the conclusion of the training, clinicians are then instructed to use the training materials to transfer the information and skills they learned about ACP-GV to patients they encounter in their respective work settings. The culmination of the ACP-GV Facilitator Training is, therefore, when the clinician is able to facilitate their own group, guide discussions and activities, actively use training materials, and encourage veterans and those they trust to participate in a discussion regarding ACP in a group setting. Finally, we share key resources for publicly available and accessible online trainings to promote spread outside of VA. ACP-GV's Facilitator Training can assist healthcare professionals in implementing ACP-GV in a variety of care settings., (© 2024. This is a U.S. Government work and not under copyright protection in the US; foreign copyright protection may apply.)

Objective: This study aimed to evaluate a theory-based website to support people with dementia and their families in the advance care planning (ACP) process., Methods: We conducted an eight-week evaluation study with a convergent parallel mixed-methods design involving people with mild to moderate dementia and their family caregivers who used the website at their convenience. Interviews were conducted at baseline and after 8 weeks to evaluate usability, acceptability, feasibility, experiences, and effects on ACP knowledge, attitudes, perceived barriers to engaging in ACP, self-efficacy and skills to engage in ACP., Results: We included 52 participants (21 people with dementia and 31 family caregivers). In the interviews, all participants considered the website useful and valued the ACP content. Morever, participants reported that family caregivers mostly used the website alone or with the person with dementia. Participants' ACP knowledge, self-efficacy, and skills improved after 8 weeks compared the beginning of the study., Conclusion: The website may be an ideal introduction for those wanting to start ACP, providing user-friendly content and features for initiating and exploring ACP., Practical Implications: ACP in dementia requires a tailored approach. Extra support is crucial for website adoption, emphasising the role of family caregivers while respecting individuals' autonomy., 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 B.V. All rights reserved.)

Advance care planning (ACP) is essential in managing serious and chronic illnesses to ensure that patients receive care aligned with their personal values, goals, and preferences. This review focuses on integrating ACP in the treatment of patients receiving implantable left ventricular assist devices (VADs). The heart failure palliative care team developed a unique advance directive form and pamphlet to facilitate ACP discussions, emphasizing not only medical treatment preferences but also patients' values and life goals.The study highlights the distinction between bridge to transplantation (BTT) and destination therapy (DT) in VAD patients, with different goals and considerations for ACP. The use of decision aids developed especially for DT candidates as a communication tool helps in sharing patients' wishes and facilitates shared decision-making, particularly in the complex decisions surrounding DT therapy.Challenges in implementing ACP, such as time constraints due to urgent medical conditions, difficulties in patient communication, and the recent COVID-19 pandemic, are addressed. The need for a comprehensive healthcare system capable of supporting patients' ACP wishes, especially in the community setting, is also pointed out.Future directions include not only developing materials to ease ACP discussions and ensuring that ACP content is shared among healthcare providers to foster collaborative and detailed planning, but also a call for widespread adoption of ACP in Japan.This is a translation of a paper written in Japanese Journal of Artificial Organs (Vol. 52, No. 1, pp. 89-92) with additions and corrections., (© 2024. The Japanese Society for Artificial Organs.)

Advance care planning is considered an important part of high-quality end-of-life care. Its cost-effectiveness is currently unknown. In this study, we explore the cost-effectiveness of a strategy, in which advance care planning is offered systematically to older people at the end-of-life compared with standard care. We conducted decision-analytic modelling. The perspective was health and social care and the time horizon was 1 year. Outcomes included were quality-adjusted life years as they referred to the surviving carers. Data sources included published studies, national statistics and expert views. Average total cost in the advance care planning versus standard care group was £3,739 versus £3,069. The quality-adjusted life year gain to carers was 0.03 for the intervention in comparison with the standard care group. Based on carer's health-related quality-of-life, the average cost per quality-adjusted life year was £18,965. The probability that the intervention was cost-effective was 55% (70%) at a cost per quality-adjusted life year threshold of £20,000 (£30,000). Conducting cost-effectiveness analysis for advance care planning is challenging due to uncertainties in practice and research, such as a lack of agreement on how advance care planning should be provided and by whom (which influences its costs), and about relevant beneficiary groups (which influences its outcomes). However, even when assuming relatively high costs for the delivery of advance care planning and only one beneficiary group, namely, family carers, our analysis showed that advance care planning was probably cost-effective., (© 2020 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.)

Purpose: Patients' readiness for advance care planning (ACP) is often considered a prerequisite for starting ACP conversations. Healthcare professionals' uncertainty about patients' readiness hampers the uptake of ACP in clinical practice. This study aims To determine how patients' readiness is expressed and develops throughout an ACP conversation., Methods: A qualitative sub-study into the ACTION ACP conversations collected as part of the international Phase III multicenter cluster-randomized clinical trial. A purposeful sample was taken of ACP conversations of patients with advanced lung or colorectal cancer who participated in the ACTION study between May 2015 and December 2018 (n = 15). A content analysis of the ACP conversations was conducted., Results: All patients (n = 15) expressed both signs of not being ready and of being ready. Signs of being ready included anticipating possible future scenarios or demonstrating an understanding of one's disease. Signs of not being ready included limiting one's perspective to the here and now or indicating a preference not to talk about an ACP topic. Signs of not being ready occurred more often when future-oriented topics were discussed. Despite showing signs of not being ready, patients were able to continue the conversation when a new topic was introduced., Conclusion: Healthcare professionals should be aware that patients do not have to be ready for all ACP topics to be able to participate in an ACP conversation. They should be sensitive to signs of not being ready and develop the ability to adapt the conversation accordingly.

The purpose of this scoping review is to present an overview of terms found in publications associated with end-of-life care management that can impact decision making by patients, health care providers, and researchers. Connotative terminology and syntax can influence the decision-making approach and process. We examined 49 publications for positive, negative, and neutral connotations. We consistently found negative terminology in the publications. To advance the development of nursing knowledge regarding end-of-life care, researchers should be aware of their biases of terminology and syntax use. We propose modifications to language used in end-of-life care planning models and literature can improve care congruency., (Copyright © 2020 Wolters Kluwer Health, Inc. All rights reserved.)

Chronic obstructive pulmonary disease (COPD) is a major cause of morbidity worldwide. Patients with severe COPD often fail to receive adequate palliative care and are subject to undesired hospital transfers and cardiopulmonary resuscitation. Although promoting advance care planning (ACP) in the community can help ensure the optimal delivery of palliative care for patients with COPD, the key challenges to routinely implementing ACP are not known. The aim of this study was to identify the perception of healthcare professionals with regard to ACP for adults living with severe COPD and the challenges to facilitating ACP. A multicenter qualitative study design was used. In-depth semistructured interviews were held involving 38 healthcare professionals from 19 institutions in Japan. Text data were analyzed by content analysis. Five main themes capturing the challenges to routine implementation of ACP were identified: daily decision-making; sense of ethical decision-making; in-depth interviewing skills; collaborative information sharing among team members; and knowledge dissemination regarding ACP. The model demonstrates the complexity inherent in ACP facilitation for community-dwelling adults with severe COPD, with all the elements required for successful ACP implementation. We recommend an approach that recognizes the importance of stakeholder education, particularly educating professionals to develop the knowledge, attitudes, and skills required for ACP facilitation: in-depth interviewing, collaborative information sharing, and ethical analysis, focusing on decision-making concerning everyday life support., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

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.)

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.)

Objectives: Despite known benefits, advance care planning (ACP) is rarely a component of usual practice in long-term care (LTC). A series of tools and workbooks have been developed to support ACP uptake amongst the generable population. Yet, their potential for improving ACP uptake in LTC has yet to be examined. This study explored if available ACP tools are acceptable for use in LTC by (a) eliciting staff views on the content and format that would support ACP tool usability in LTC (b) examining if publicly available ACP tools include content identified as relevant by LTC home staff. Ultimately this study aimed to identify the potential for existing ACP tools to improve ACP engagement in LTC., Methods: A combination of focus group deliberations with LTC home staff (N = 32) and content analysis of publicly available ACP tools (N = 32) were used to meet the study aims., Results: Focus group deliberations suggested that publicly available ACP tools may be acceptable for use in LTC if the tools include psychosocial elements and paper-based versions exist. Content analysis of available paper-based tools revealed that only a handful of ACP tools (32/611, 5%) include psychosocial content, with most encouraging psychosocially-oriented reflections (30/32, 84%), and far fewer providing direction around other elements of ACP such as communicating psychosocial preferences (14/32, 44%) or transforming preferences into a documented plan (7/32, 22%)., Conclusions: ACP tools that include psychosocial content may improve ACP uptake in LTC because they elicit future care issues considered pertinent and can be supported by a range of clinical and non-clinical staff. To increase usability and engagement ACP tools may require infusion of scenarios pertinent to frail older persons, and a better balance between psychosocial content that elicits reflections and psychosocial content that supports communication.

Background and Purpose: Advance care planning allows people to plan for their future care needs and can include medical, psychological and social aspects. However, little is known on the use, experience of and attitudes towards advance care planning in patients with parkinsonian disorders, their family carers and healthcare professionals., Methods: A systematic search of online databases was conducted in April 2019 using a narrative synthesis approach with thematic analysis and tabulation to synthesize the findings., Results: In all, 507 articles were identified and 27 were included. There were five overarching themes: (i) what is involved in advance care planning discussions, (ii) when and how advance care planning discussions are initiated, (iii) barriers to advance care planning, (iv) the role of healthcare professionals and (v) the role of the family carer. This evidence was used to highlight eight effective components to support optimal advance care planning in parkinsonian disorders: advance care planning discussions should be individualized in content, timing and approach; patients should be invited to discuss advance care planning early and regularly; palliative care services should be introduced early; a skilled professional should deliver advance care planning; support to family carers should be offered in the advance care planning process; healthcare professionals should be educated on parkinsonian disorders and palliative care; advance care planning should be clearly documented and shared with relevant services; and healthcare professionals should be enabled to conduct effective advance care planning., Conclusions: These components can inform best practice in advance care planning in patients with parkinsonian disorders., (© 2020 The Authors. European Journal of Neurology published by John Wiley & Sons Ltd on behalf of European Academy of Neurology.)

Purpose of the Review: To identify and assess factors that affect the decisions to initiate advance care planning (ACP) amongst people living with dementia (PwD)., Methods: A narrative review was conducted. A keyword search of Medline, CINAHL PsycINFO, and Web of Sciences databases produced 22,234 articles. Four reviewers independently applying inclusion/exclusion criteria resulted in 39 articles. Discrepancies were settled in discussion., Results: Twenty-eight primary studies and eleven review articles remained. Narrative analysis generated five categories of facilitating and inhibitory factors: people with dementia, family orientation, healthcare professionals (HCP), systemic and contextual factors, and time factors. Key facilitators of ACP initiation were (i) healthcare settings with supportive policies and guidelines, (ii) family members and HCPs who have a supportive relationship with PwD, and (iii) HCPs who received ACP education. Key inhibitors were: (i) lack of knowledge about the dementia trajectory in stakeholders, (ii) lack of ACP knowledge, and (iii) unclear timing to initiate an ACP., Conclusion: This review highlighted the main challenges associated with optimal ACP initiation with PwD. To encourage effective ACP initiation with PwD, succinct policies and guidelines for clinical commissioners are needed. ACP also needs to be discussed with family members in an informal, iterative manner. More research is required on initiation timing given the disease trajectory and changing family dynamics.

Objectives: To explore current practice and the role of UK care homes and Admiral Nurses in helping people living with dementia and their family carers prepare for end-of-life., Methods: We conducted an online survey with all UK Admiral Nurses (59% response rate) and a random sample of Gold Standards Framework accredited care homes in England and Wales (38% response rate). We used descriptive statistics to report survey findings., Results: While respondents commonly discussed the progressive nature of dementia with people living with dementia and family carers, they less frequently spoke to people with dementia or carers about the nature of dementia as life shortening, terminal, or a disease you can die from. Admiral Nurses highlighted that where service models reduced continuity of care, opportunities for ongoing discussion and developing relationships that supported these discussions were reduced. Admiral Nurses and care homes raised concerns about conversations being left too late, when the person with dementia no longer had capacity to engage. There was a high level of agreement with all European Association of Palliative Care and National Institute for Health and Care Excellence (NICE) statements presented regarding end-of-life care planning and discussions., Conclusions: Our survey of care homes and Admiral Nurses, combined with findings from our previous survey of UK memory services, increases our understanding of how services help people with dementia and family carers prepare for end-of-life. We found fragmentation across the service system, lack of continuity, and tensions regarding when these conversations should be initiated and by whom., (© 2020 John Wiley & Sons Ltd.)

Background: Advance care planning (ACP) is the process of discussing and documenting wishes and preferences for future care. Research about ACP for people with intellectual disabilities (ID) is limited. This study describes what is important for ACP in the palliative phase of people with intellectual disabilities., Method: In-depth interviews were conducted with people with intellectual disabilities (n = 5), relatives (n = 7) and professional caregivers (n = 8). Qualitative data were analysed inductively, using the principles of thematic analysis., Results: Important themes in ACP were as follows: tailoring care, working as a team and taking and giving time. The perceived role of people with intellectual disabilities in ACP was to express their wishes. Relatives had a signalling, representing and contributing role. Professionals felt their role was to inform, collaborate and coordinate., Conclusions: A staff training programme about ACP should cover how to build and maintain close relationships, provide a safe environment and address ACP as an integral part of care., (© 2019 John Wiley & Sons Ltd.)

Background: Advance care planning is widely advocated to improve outcomes in end-of-life care for patients suffering from heart failure. But until now, there has been no systematic evaluation of the impact of advance care planning (ACP) on clinical outcomes. Our aim was to determine the effect of ACP in heart failure through a meta-analysis of randomized controlled trials (RCTs)., Methods: We searched CINAHL, Cochrane Central Register of Controlled Trials, Database of Systematic Reviews, Embase, ERIC, Ovid MEDLINE, Science Citation Index and PsycINFO (inception to July 2018). We selected RCTs including adult patients with heart failure treated in a hospital, hospice or community setting. Three reviewers independently screened studies, extracted data, assessed the risk of bias (Cochrane risk of bias tool) and evaluated the quality of evidence (GRADE tool) and analysed interventions according to the Template for Intervention Description and Replication (TIDieR). We calculated standardized mean differences (SMD) in random effects models for pooled effects using the generic inverse variance method., Results: Fourteen RCTs including 2924 participants met all of the inclusion criteria. There was a moderate effect in favour of ACP for quality of life (SMD, 0.38; 95% CI [0.09 to 0.68]), patients' satisfaction with end-of-life care (SMD, 0.39; 95% CI [0.14 to 0.64]) and the quality of end-of-life communication (SMD, 0.29; 95% CI [0.17 to 0.42]) for patients suffering from heart failure. ACP seemed most effective if it was introduced at significant milestones in a patient's disease trajectory, included family members, involved follow-up appointments and considered ethnic preferences. Several sensitivity analyses confirmed the statistically significant direction of effect. Heterogeneity was mainly due to different study settings, length of follow-up periods and compositions of ACP., Conclusions: ACP improved quality of life, patient satisfaction with end-of-life care and the quality of end-of-life communication for patients suffering from heart failure and could be most effective when the right timing, follow-up and involvement of important others was considered.

Introduction: Advance care planning is a means for patients to communicate their wishes, fears and desires for future health decisions should they lose the ability to consider or communicate these. Despite being supported by governments and healthcare leaders, uptake amongst the general population remains low. Nurses play a crucial role in promoting and engaging with these discussions given their close relationship with patients and families in a range of clinical settings., Aim: To describe the barriers that nurses and healthcare professionals believe prevent them from exploring advance care planning with their patients., Method: We carried out a systematic review of peer-reviewed journal articles from the databases MEDLINE, Embase, CINAHL Plus, Web of Science and ProQuest Central, guided by the PRISMA checklist., Results: Eleven articles were identified: all were self-reporting surveys using a mix of open and closed questions. They originated in the USA, Canada, Australia and Ireland. The participants included various healthcare professionals, with the majority of studies focussing on nurses. The two most important barriers to advance care planning are lack of education and insufficient time. Advance care planning appears to be well supported, and nurses and healthcare professionals report themselves to be comfortable and confident to take on the responsibility., Conclusion: There is a need for greater education and training for nurses and healthcare professionals. In particular, there needs to be better understanding of professional and legal responsibilities. The need for sufficient time to be made available to allow these conversations, in often busy settings, will need institutional and financial support., Relevance to Clinical Practice: Increased training and knowledge are likely to lead to more positive attitudes and greater confidence for nurses, and other healthcare professionals, which should help support and encourage patient engagement with advance care planning., (© 2019 John Wiley & Sons Ltd.)

Aims and Objectives: To investigate, from the staff perspective, residents' self-determination during the palliative phase while in residential care., Background: Residential care facilities have a high prevalence of palliative care needs and dependency. The ability of residents to make and execute decisions may be hindered by their cognitive and physical limitations. There is a need to investigate how residents' self-determination is affected during the palliative phase in residential care., Method: Twenty individual, semi-structured interviews with Registered Nurses, enrolled nurses and physicians working in residential care facilities were analysed with inductive qualitative content analysis., Findings: The overarching main theme, Balancing between maintaining and overriding the residents' self, illuminated how strengthened self-determination affected the residents' self in a positive way, while undermined self-determination affected the residents' self in a negative way. Factors that strengthened self-determination were facilitating the residents' own decision making, acting in accordance with the residents' wishes and acting as the residents' spokesperson when necessary. Factors that undermined self-determination were residents' dependence, others setting the terms, for example, being controlled by routines, insufficient communication, for example, lacking end-of-life care planning and others crossing the boundaries of one's personal sphere., Conclusion: There are serious threats to residents' self-determination but also strategies to cope with these threats. Physical and cognitive frailty and other people setting the terms hinder both making and executing decisions. However, staff can strengthen residents' self-determination and assist in the presentation of residents' self by adopting a relational view of autonomy and by taking personal preconditions into account. There is a need to come to terms with the lack of end-of-life care planning and to give residents a voice in these matters. Implementing a palliative approach early in the illness trajectory could facilitate communication about end-of-life care both within the group of staff and among the residents, relatives and staff., Implications for Practice: To maintain residents' self-determination and protect their self, staff need knowledge about residents' life stories and personal preconditions. This in turn requires continuity of care and spending time with residents to build relationships. Implementing an early palliative approach with a focus on factors that promote quality of life for each resident might facilitate communication and enhance decision making both in everyday life and in planning for end-of-life care., (© 2019 John Wiley & Sons Ltd.)

In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples' ability to enact moral agency in making such decisions.

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., 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.

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., 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.

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.)

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.

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.

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: 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.)

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 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.)

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.)