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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.)

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.

Abstract 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.

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: 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.

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]

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.)

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]

Introduction The coronavirus pandemic (COVID-19) has affected the functioning and capacity of healthcare systems worldwide. COVID-19 has also disproportionately affected older adults. In the context of COVID-19, decision-making surrounding place of care (PoC) and place of death (PoD) in older adults involves significant new challenges. Aims To explore key factors that influence PoC and PoD decisions in older adults. A secondary aim was to investigate key factors that influence the process and outcome of these decisions in older adults. To apply findings from current evidence to the context of COVID-19. Methods Rapid review of reviews, undertaken using WHO guidance for rapid reviews for the production of actionable evidence. Data extracted was synthesised using narrative synthesis, with thematic analysis and tabulation. Results 10 papers were included for full data extraction. These papers were published between 2005 and 2020. Papers included discussed actual PoD, as well as preferred. Results were divided into papers that explored the process of decision-making, and those that explored decision-making outcomes. Conclusions The process and outcomes of decision-making for older people are affected by many factors—all of which have the potential to influence both patients and caregivers experience of illness and dying. Within the context of COVID-19, such decisions may have to be made rapidly and be reflexive to changing needs of systems and of families and patients. [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: 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).)

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.)

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: 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).)

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]

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.)

Background: The ACTION trial evaluated the effect of a modified version of the Respecting Choices´ advance care planning programme in patients with advanced cancer in six European countries. For this purpose, an advance directive acceptable for all six ACTION countries to be used for documenting the wishes and preferences of patients and as a communication tool between patients, their caregivers and healthcare staff, was needed., Aim: To describe the development of a multinational cancer specific advance directive, the ´My Preferences form´, which was first based on the 2005 Wisconsin 'Physician Orders of Life Sustaining Treatment´ Form, to be used within the ACTION trial., Methods: Framework analysis of all textual data produced by members of the international project team during the development of the ACTION advance directives (e.g. drafts, emails, meeting minutes…)., Setting/participants: ACTION consortium members (N = 28) with input from clinicians from participating hospitals (N = 13) and ´facilitators´ (N = 8) who were going to deliver the intervention., Results: Ten versions of the ACTION advance directive, the ´My Preferences form´, were developed and circulated within the ACTION consortium. Extensive modifications took place; removal, addition, modification of themes and modification of clinical to lay terminology. The result was a thematically comprehensive advance directive to be used as a communication tool across the six European countries within the ACTION trial., Conclusion: This article shows the complex task of developing an advance directive suitable for cancer patients from six European countries; a process which required the resolution of several cross cultural differences in law, ethics, philosophy and practice. Our hope is that this paper can contribute to a deeper conceptual understanding of advance directives, their role in supporting decision making among patients approaching the end of life and be an inspiration to others wishing to develop a disease-specific advance directive or a standardised multinational advance directive., Competing Interests: The authors have declared that no competing interests exist.

Background: For the benefits of advance care planning to be realised during a hospital admission, the treating team must have accurate knowledge of the law pertaining to implementation of advance care directives (ACDs) and substitute decision making., Aims: To determine in a sample of Junior Medical Officers (JMOs): (1) knowledge of the correct order to approach people as substitute decision makers if a patient does not have capacity to consent to treatment; (2) knowledge of the legal validity of ACDs when making healthcare decisions for persons without capacity to consent to treatment, including the characteristics associated with higher knowledge; and (3) barriers to enacting ACDs., Methods: A cross-sectional survey was conducted at five public hospitals in New South Wales, Australia. Interns, residents, registrars, and trainees on clinical rotation during the recruitment period were eligible to participate. Consenting participants completed an anonymous pen-and-paper survey., Results: A total of 118 JMOs completed a survey (36% return rate). Fifty-five percent of participants were female and 56.8% were aged 20-29 years. Seventy-five percent of JMOs correctly identified a Guardian as the first person to approach if a patient did not have decision-making capacity, and 74% correctly identified a person's spouse or partner as the next person to approach. Only 16.5% identified all four persons in the correct order, and 13.5% did not identify any in the correct order. The mean number of correct responses to the questions assessing knowledge of the legal validity of ACDs was 2.6 (SD = 1.1) out of a possible score of 6. Only 28 participants (23.7%) correctly answered four or more knowledge statements correctly. None of the explored variables were significantly associated with higher knowledge of the legal validity of ACDs. Uncertainty about the currency of ACDs and uncertainty about the legal implications of relying on an ACD when a patient's family or substitute decision maker disagree with it were the main barriers to enacting ACDs., Conclusion: JMOs knowledge of the legal validity of ACDs for persons without decision making capacity and the substitute decision making hierarchy is limited. There is a clear need for targeted education and training to improve knowledge in this area for this cohort., (© 2022. The Author(s).)

Background: General Practitioners (GPs) are central in the care of Dutch older people and in a good position to have Advance Care Planning (ACP) conversations. Interview studies reveal that the doctor-patient relationship is important when initiating ACP conversations and can also be influenced by ACP conversations. We aimed to examine the association between having an ACP conversation and the patient feeling the GP knows him or her and the patient trusting the GP and vice versa., Methods: Implementation of ACP in primary care was evaluated in a pre-and post design. Questionnaires before implementation of ACP and 14 months later were sent to patients aged 75 years or older within 10 GP-practices and 2 care homes. Multivariable logistic regression was used to model the relationship between ACP conversations during implementation and the patient-GP relationship before implementation. Odds ratios were adjusted for potential confounders. Generalized ordered logistic regression was used to model the relationship between the changes in patient-GP relationship before and after implementation and ACP conversations during implementation., Results: Four hundred fifty-eight patients filled out the pre- and post-test questionnaire. There was no association between the GP knowing the patient and trust in the pre-test and having an ACP conversation during the implementation. For people who had had an ACP conversation at the end of the implementation period their trust remained more often the same or was higher after implementation (trust to provide good care OR 2.93; trust to follow their wishes OR 2.59), compared to patients who did not have an ACP conversation. A reduction in trust was less likely to happen to patients who had an ACP conversation compared to patients who did not have an ACP conversation., Conclusions: Although we have not found evidence for trust as a prerequisite for ACP conversations, this paper shows that ACP conversations can be beneficial for the doctor-patient relationship., (© 2022. The Author(s).)

Abstract 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.

Background: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance Care Planning) - an intervention to improve ACP in adolescents with cancer, their parents and paediatric oncologists., Methods: Several methods informed the intervention development process: 1) Problem identification: interviews with 11 healthcare professionals working in paediatric oncology; 2) Identification of evidence: literature review of existing pACP tools and barriers and facilitators in performing pACP; 3) Logic model and 4) Intervention design: collaborative expert meetings with researchers and professionals in pACP; 5a) Acceptability test of the materials: interviews with nine healthcare professionals, four adolescents and young adults with cancer and six parents; 5b) Feasibility test of core intervention components with three families, including interviews about their experiences., Results: The BOOST pACP intervention was iteratively developed and adapted, based on feedback from families, healthcare professionals, and pACP experts (e.g., components were changed, deleted, and added; formulation of themes and associated questions were amended to enhance acceptability). The core components of the BOOST pACP intervention include: four ACP conversation sessions with the adolescent and/or parent(s) provided by a trained facilitator, structured by interactive conversation cards covering different ACP themes, followed by a transfer of information from the intervention facilitator to the paediatric oncologist. Core intervention components were deemed feasible by all participating families., Conclusion: The BOOST pACP intervention was developed by close involvement of both adolescent patients and their parents, healthcare professionals and pACP experts. The final intervention and supporting materials are considered appropriate and feasible. Its effectiveness in improving parent-adolescent communication on ACP themes is currently being tested in a multi-centre randomised controlled trial. Researchers aiming to develop a complex psychosocial intervention for a vulnerable target group could use the step-by-step approach described in this paper., (© 2022. The Author(s).)

Aims: Pulmonary arterial hypertension (PAH) is common amongst patients with congenital heart disease (CHD). It is a severe and complex condition that adversely affects quality of life and prognosis. While quality of life questionnaires are routinely used in clinical pulmonary hypertension practice, little is known on how to interpret their results and manage PAH‐CHD patients with evidence of impaired health‐related quality of life, especially those with advanced disease and palliative care needs. Methods and results: We performed a systematic review of studies concerning palliative care for people with PAH‐CHD, also reviewing the health‐related quality of life literature pertaining to these patients. Of 330 papers identified through initial screening, 17 were selected for inclusion. Underutilization of advance care planning and palliative care resources was common. Where palliative care input was sought, this was frequently late in the course of the disease. No studies provided evidence‐based clinical criteria for triggering referral to palliative care, a framework for providing tailored care in this patient group, or how to manage the risk of sudden cardiac death and implantable cardioverter defibrillators in advanced PAH‐CHD. We synthesize this information into eight important areas, including the impact of PAH‐CHD on quality of life, barriers to and benefits of palliative care involvement, advance care planning discussions, and end‐of‐life care issues in this complex patient group, and provide expert consensus on best practice in this field. Conclusions: This paper presents the results of a systematic review and expert statements on the preferred palliative care strategy for patients with PAH‐CHD. [ABSTRACT FROM AUTHOR]

Background: Hospitalisation rates for older people are increasing, with end-of-life care becoming a more medicalised experience. Innovative approaches are warranted to support early identification of the end-of-life phase, communicate prognosis, provide care consistent with people's preferences, and improve the use of healthcare resources. The Intervention for Appropriate Care and Treatment (InterACT) trial aimed to increase appropriate care and treatment decisions for older people at the end of life, through implementation of a prospective feedback loop. This paper reports on the care review outcomes.Methods: A stepped-wedge randomised controlled trial was conducted in three large acute hospitals in Queensland, Australia between May 2020 and June 2021. The trial identified older people nearing the end of life using two validated tools for detecting deterioration and short-term death. Admitting clinical teams were provided with details of patients identified as at-risk with the goal of increasing awareness that end of life was approaching to facilitate appropriate patient centred care and avoid non-beneficial treatment. We examined the time between when the patient was identified as 'at-risk' and three outcomes: clinician-led care review discussions, review of care directive measures and palliative care referrals. These were considered useful indicators of appropriate care at the end of life.Results: In two hospitals there was a reduction in the review of care directive measures during the intervention compared with usual care at 21 days (reduced probability of - 0.08; 95% CI: - 0.12 to - 0.04 and - 0.14; 95% CI: - 0.21 to - 0.06). In one hospital there was a large reduction in clinician-led care review discussions at 21 days during the intervention (reduced probability of - 0.20; 95% CI: - 0.28 to - 0.13). There was little change in palliative care referrals in any hospital, with average probability differences at 21 days of - 0.01, 0.02 and 0.04.Discussion: The results are disappointing as an intervention designed to improve care of hospitalised older people appeared to have the opposite effect on care review outcomes. The reasons for this may be a combination of the intervention design and health system challenges due to the pandemic that highlight the complexity of providing more appropriate care at the end of life.Trial Registration: Australia New Zealand Clinical Trial Registry, ACTRN12619000675123 (registered 6 May 2019). [ABSTRACT FROM AUTHOR]

Objectives: Initiation of advance care planning (ACP) and palliative care (PC) assessments in general practice is key to quality end-of-life care. The Advance Project promotes a team-based approach to initiating ACP and PC needs assessment in general practices through training, resources and practical support for implementation from local primary health networks (PHNs). This paper aims to understand: (1) general practice participants' experiences of undertaking Advance Project training and implementing the Advance Project resources in their practices; (2) barriers and facilitators to implementation of Advance Project resources; and (3) PHN staff experiences of supporting general practices through training and practical support for implementation of the Advance Project resources., Design: Qualitative study using semistructured interviews and thematic analysis., Setting: Twenty-one general practices and four PHNs from three Australian states were recruited between June 2019 and May 2020., Participants: General practitioners (GPs), general practice nurses, practice managers (PMs) and PHN staff., Results: 45 participants comprising 13 GPs, 13 general practice nurses, 9 PMs, 3 allied health staff and 7 PHN staff were interviewed. The general practice participants generally agreed that the Advance Project training/resources led to changes in their own behaviour and increased their awareness of the importance of ACP/PC discussion with their patients. Participants reported the following benefits for patients: increased awareness of ACP; engagement with families/carers and peace of mind. Key facilitators for successful implementation were a team-based approach, the role of the PHN, the role of practice champions, training facilitators' ability to influence peers and facilitate change, and mentoring support. Barriers to implementation included issues related to workplace culture, cost, time/workload, patients and health system., Conclusion: Findings suggest that the Advance Project approach facilitated successful implementation of ACP and PC needs assessment into usual care in general practices that encouraged teamwork among GPs and general practice nurses. The ability of the practice to make the best use of practical support and guidance available to them through their local PHN both before and during implementation was a key factor in integration of Advance Project resources into routine practice., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Allogeneic hematopoietic stem cell transplantation (HSCT) carries significant risks of morbidity and mortality. Participation in advance care planning (ACP) is crucial to promote patient-centered care and has been shown to have positive impacts on patients, caregivers, and providers. Historically, both HSCT recipients and adolescents and young adults (AYAs) are significantly less likely to engage in ACP. We sought to characterize ACP utilization in AYAs undergoing HSCT by evaluating the frequency of different types of ACP documentation over time and identifying demographic and clinical factors associated with documentation of each type of ACP. We conducted a single-center retrospective review of the electronic health record (EHR) of AYAs (age 15 to 39 years) who underwent allogeneic HSCT between 2015 and 2020. EHR documents were screened for 3 predefined categories of ACP: (1) advance directives (ADs) or medical orders (MOs), which included proof of signed paper directives, expressions of preferred code status, and identification of a healthcare proxy; (2) goals of care (GOC) conversations, which included discussions of medical care in a specific situation informed by patients' priorities; and (3) other ACP conversations, which included more general discussions of patients' values regarding their care or legacy wishes. Documents were coded by 2 researchers, and discrepant categorizations were reviewed by a third researcher. Patients age <18 years on the day of transplantation were excluded in the analyses of AD/MO documentation. Univariate and multivariate logistic regression were used to test for associations between patient factors and documentation of each type of ACP. For deceased patients, Kaplan-Meier curves were created to illustrate the time-to-event relationship between days before death and documentation of each type of ACP. Sixty-eight thousand documents associated with 219 patients were reviewed, and 666 ACP documents associated with 190 patients were identified. Few of the 219 patients had documented GOC (n = 29; 13%) or other ACP conversations (n = 81; 37%). A subset of patients (n = 28; 13%) had no documented ACP. Most of the 201 patients age ≥18 years had a documented AD/MO (n = 172; 86%). No tested factors were significantly associated with documentation of ADs/MOs. GOC and other ACP conversations were more likely to occur in patients with a palliative care consult, and patients with a malignant diagnosis were also more likely to engage in GOC conversations. More than 50% of the documentation occurred in the subset of 39 deceased patients, with one-half of AD/MO documentation in the last 67 days of life, one-half of other ACP documentation in the last 20 days of life, and one-half of GOC documentation in the final 2 days of life. Although the majority of AYA patients receiving HSCT did have documentation of ADs/MOs, few patients had documented GOC or other ACP conversations. The bulk of all ACP conversations occurred in patients that ultimately died and who were very close to the end of life. Our results support ongoing efforts to improve the implementation of ACP in this vulnerable population, particularly for those undergoing HSCT for nonmalignant conditions., (Copyright © 2022. Published by Elsevier Inc.)

Aim: This paper provides an institutional ethnographic analysis of how advance care planning discussions, which included advance decisions about serious illness, hospital admission and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) forms, were systematically placed into the hands of senior social careworkers (SSCWs) in a residential care home (RCH). RCHs are care settingswhere there are no on-site nurses, and access to hospital and/or community doctors and nurses is limited. Methods: The paper traces the organising features of day-to-daywork gathered frominterviewswith SSCWs (n¼4) and others (n¼6) whose (well-intentioned) work shaped what happened in the RCH. Results: It shows how the experience of SSCWs was socially organised to happen as it did as they (and others) complied with powerful organising texts such as national and local policy documents, care plans and audit forms. The paper concludes that although SSCWs decisionmaking conversations were out of alignment with the national DNACPR policy, they cannot simply be described as poor practice. This is because they were socially organised by a complex web of institutional practices related to the occupancy rate in the RCH, the inspection process of the care home scrutiny body, the quality assurance process of the RCH company, the funding of palliative care education, and powerful political and fiscal drives to reduce spending on over-75s. These practices had little to do with the actual care needs of RCH residents or the actual support needs of RCH staff. Conclusions: The paper points towards necessary policy changes. It also highlights how 'competent' work driven by ideological institutional practices can result in ethically troubling situations in day-to-day working life. This emphasises the importance of carefully examining the social organisation of situations typically described as poor practice if we are to understand how they are (re)produced. It also offers a different account of care home deaths than is typically presented in the professional literature. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is particularly appropriate for persons with early dementia (PWED) since it promotes conversations about dementia-specific illness scenarios, addresses inconsistencies between advance directives and patients' observed behavior, emphasizes prospective and relational autonomy, and may be generally consistent with older persons' decision-making needs. However, despite evidence of its benefits, ACP is yet to become widely used among PWED. In this paper, we present a dementia-specific tool developed in Western Switzerland, discuss results of a pilot trial designed to promote ACP among PWED and their relatives, and discuss the feasibility and acceptability of the intervention and the study protocol in prevision of a large scale trial., Methods: This one-arm pre-post pilot trial consisted of four visits, with visits 2 and 3 being the ACP intervention. Quantitative outcome measures during visit 1 and 4 assessed the aptitude of the intervention to support PWED autonomy and relatives' knowledge of PWED's preferences. Feasibility was explored according to how the recruitment procedure unfurled and based on the necessary revisions to the study protocol and healthcare providers' reason for excluding a PWED from the study. Acceptability was assessed according to pre-post evaluations, difficulties regarding the intervention or trial participation, and pre-post qualitative interviews regarding participants' reasons to participate to the study, satisfaction with the tool and difficulties perceived., Results: The ACP intervention itself was well received by PWED and their relatives that expressed satisfaction with the procedure, especially regarding the opportunity to discuss a sensitive topic with the help of a facilitator. Five main challenges in terms of feasibility were 1) to locate eligible patients, 2) to tailor recruitment procedures to recruitment locations, 3) to adapt inclusion criteria to clinical routines, 4) to engage PWED and their relatives in ACP, and 5) to design a trial that does not burden PWED. Despite these challenges, the intervention increased the number of advance directives, the concordance between PWED's preferences and relatives' decision on their behalf, and relatives' perceived control over healthcare decisions., Conclusion: Misconceptions about dementia and ACP, in the patient, relatives, and healthcare providers, combined with structural and institutional challenges, have the power to impede research and implementation of ACP in dementia care. For this reason, we conclude that a large scale trial to test a dementia-specific tool of ACP is currently not feasible in Western Switzerland and should be endorsed in a systemic approach of ACP., Trial Registration: This trial was registered in the database clinicaltrial.gov with the number NCT03615027 ., (© 2021. The Author(s).)

Background: Better insight in patients' prognosis can help physicians to timely initiate advance care planning (ACP) discussions with patients with chronic obstructive pulmonary disease (COPD). We aimed to identify predictors of mortality.Methods: We systematically searched databases Embase, PubMed, MEDLINE, Web of Science, and Cochrane Central in April 2020. Papers reporting on predictors or prognostic models for mortality at 3 months and up to 24 months were assessed on risk-of-bias. We performed a meta-analysis with a fixed or random-effects model, and evaluated the discriminative ability of multivariable prognostic models.Results: We included 42 studies (49-418,251 patients); 18 studies were included in the meta-analysis. Significant predictors of mortality within 3-24 months in the random-effects model were: previous hospitalization for acute exacerbation (hazard ratio [HR] 1.97; 95% confidence interval [CI] 1.32-2.95), hospital readmission within 30 days (HR 5.01; 95% CI 2.16-11.63), cardiovascular comorbidity (HR 1.89; 95% CI 1.25-2.87), age (HR 1.48; 95% CI 1.38-1.59), male sex (HR 1.68; 95% CI 1.38-1.59), and long-term oxygen therapy (HR 1.74; 95% CI 1.10-2.73). Nineteen previously developed multicomponent prognostic models, as examined in 11 studies, mostly had moderate discriminate ability.Conclusion: Identified predictors of mortality may aid physicians in selecting COPD patients who may benefit from ACP. However, better discriminative ability of prognostic models or development of a new prognostic model is needed for further large-scale implementation.Registration: PROSPERO (CRD42016038494), https://www.crd.york.ac.uk/prospero/ . [ABSTRACT FROM AUTHOR]

Background: The proportion of hospital deaths has declined in the past few decades, while the proportions of nursing home deaths have increased. This trend of increasing deaths in long-term care facilities underlines the importance of improving end-of-life care provisions in these settings to meet individual preferences and needs. Under these circumstances, a comprehensive understanding of end-of-life care preferences in local nursing home residents can help healthcare professionals and policymakers develop strategies to increase the advance directive completion rate and quality of care. This study aimed to explore and compare advance directive and end-of-life care preferences of nursing home residents in Hong Kong and Taiwan., Methods: A structured questionnaire was developed by the research team to investigate advance directive and end-of-life care preferences in older Chinese nursing home residents. Nursing home residents with frail or pre-frail status and over the age of 64 were invited to participate in the study, and information on demographics, functional status, advance directive experiences, and end-of-life care expectations was collected through questionnaire interviews., Results: A total of 325 eligible participants from 32 facilities completed the survey, including 238 older residents in Hong Kong and 87 in Taiwan. A significantly lower proportion of the Hong Kong residents had completed an advance directive compared with the Taiwanese (3 vs. 13%, p = 0.001). Among participants who did not have an advance directive, 46% of the Taiwanese participants said they would consider completing one in the future, compared with 20% of the Hong Kong participants (p < 0.001). A total of 79% of the Hong Kong participants and 80% of the Taiwanese participants responded that prolonging life in the given hypothetical dying scenario was "not important" (p = 0.76). Only 14% of participants in Hong Kong and 18% of participants in Taiwan reported prior occurrence of end-of-life care discussions with family members or health professionals (p = 0.37)., Conclusions: This paper adds evidence in support of improving end-of-life communication and the advance directive completion rate in nursing homes in Hong Kong and Taiwan. Further research is necessary to explore cross-cultural differences in end-of-life preferences and its applications in predicting decision-making and the quality of end-of-life care., (© 2021. The Author(s).)

Background: Dementia can have a profound impact on decision making. People living with dementia (PLwD) often need to make decisions about health care, and, as dementia progresses, decisions may need to be made on their behalf. Specific interventions may support this process., Review Question: What interventions are effective in improving shared decision making or surrogate decision making on the health care of PLwD?, Methods: A narrative systematic review of existing literature was conducted. Seven databases, grey literature and key journals were searched. After exclusion by title, abstracts then full texts were reviewed collaboratively to manage any disagreements., Results: Eight studies met the inclusion criteria. Two articles, including one RCT, evaluated decision aids regarding the use of enteral feeding in advanced dementia. Six further articles, including five RCTs, were found which evaluated the effectiveness of interventions supporting patients or carers with advance care planning., Conclusion: Decision-making interventions typically consist of multiple components which aim to establish preferences for future health care. Advance care planning interventions supported aspects of the decision-making processes but their impact on decision quality was rarely evaluated. Interventions did not increase the concordance of decisions with a person's values. The decision-specific interventions are unlikely to produce benefit in other decision contexts., Patient Involvement: Two caregivers, a public stakeholder group and a carer group were consulted in the design of the wider study to which this review relates. Six PLwD refined the research questions addressed in this paper., (© 2020 The Authors Health Expectations published by John Wiley & Sons Ltd.)

Abstract 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.

In the intensive care unit, it can be challenging to determine which interventions align with the patients' preferences since patients are often incapacitated and other sources, such as advance directives and surrogate input, are integral. Managing treatment decisions in this context requires a process of shared decision-making and a keen awareness of the preference-sensitive instances over the course of treatment. The present paper examines the need for the development of preference-sensitive decision timelines, and, taking aneurysmal subarachnoid hemorrhage as a use case, proposes a model of one such timeline to illustrate their potential form and value. First, the paper draws on an overview of relevant literature to demonstrate the need for better guidance to (a) aid clinicians in determining when to elicit patient preference, (b) support the drafting of advance directives, and (c) prepare surrogates for their role representing the will of an incapacitated patient in clinical decision-making. This first section emphasizes that highlighting when patient (or surrogate) input is necessary can contribute valuably to shared decision-making, especially in the context of intensive care, and can support advance care planning. As an illustration, the paper offers a model preference-sensitive decision timeline—whose generation was informed by existing guidelines and a series of interviews with patients, surrogates, and neuro-intensive care clinicians—for a use case of aneurysmal subarachnoid hemorrhage. In the last section, the paper offers reflections on how such timelines could be integrated into digital tools to aid shared decision-making.

Background: Training has been found effective in improving healthcare professionals' knowledge, confidence, and skills in conducting advance care planning (ACP). However, the association between training and its actual practice in the clinical setting has not been well demonstrated. To fill this gap, this paper examines the association between their readiness for ACP, in terms of perceived relevancy of ACP with their clinical work, attitudes toward and confidence and willingness to perform it, based on the Theory Planned Behavior and relevant training experiences., Methods: An online survey about experiences about ACP of healthcare professionals, including physicians, nurses, social workers, and allied healthcare professionals, currently working in hospital and community care in Hong Kong was conducted., Results: Of 250 respondents, approximately half (52.0%) had received ACP-related training. Those with relevant training reported significantly more positive in the perceived clinical relevance, willingness, and confidence in conducting ACP and different levels of agreement with 19 out of the 25 statements in a questionnaire about attitudes toward ACP than those without (ps ≤ 0.001-0.05). Respondents who received training only in a didactic format reported a significantly lower level of confidence in conducting ACP than did others who received a blended mode of learning (p = 0.012). Notwithstanding significant differences between respondents with and without relevant training, respondents generally acknowledged their roles in initiating conversations and appreciated ACP in preventing decisional conflict in surrogate decision-making regardless of their training experience., Conclusions: This paper revealed the association between training and higher level of readiness toward ACP among healthcare professionals. The findings showed that training is a predictor of their readiness for ACP in terms of perceived relevancy, willingness, and confidence. Those who had received training were less likely to consider commonly reported barriers such as time constraints, cultural taboos, and avoidance among patients and family members as hindrances to ACP implementation.

This paper applies a relational and familial ethic to address concerns relating to nursing home deaths and advance care planning during Covid‐19 and beyond. The deaths of our elderly in nursing homes during this pandemic have been made more complicated by the restriction of visitors even at the end of life, a time when families would normally be present. While we must be vigilant about preventing unnecessary deaths caused by coronavirus outbreaks in nursing homes, some deaths of our elders are inevitable. Thus, it is essential that advanced care planning occurs in a way that upholds the familial and relational aspects of elders' lives that often matter to them the most. We invoke concepts from feminist ethicists like Hilde Lindemann and Eva Kittay and introduce Avery Weisman and Thomas Hackett's concept of "appropriate death" to suggest better ways of planning for those deaths of our elderly that cannot be avoided. Our hope is to allow for deaths that are as meaningful as possible for both the elderly and the family members who survive them. [ABSTRACT FROM AUTHOR]

Background: Although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people's expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients' wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP., Methods: In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients' knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper., Results: One hundred two participants provided an analyzable response to the survey when asked why they haven't talked to someone about ACP. Two hundred fifty-four answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The Medical Doctor (MD) should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It's not a priority; and 8. A lack of knowledge about ACP., Conclusions: Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients' knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person- centred relationship they have with patients to mitigate some of these barriers.

Advance care planning has been shown to improve patient outcomes and is recommended as part of routine care for people with a life-limiting illness. Nevertheless, developing an advance care plan can be complex and challenging for both patients and family members, and the clinicians who support them. One complexity is that illness and its treatments often cannot be deeply understood without lived experience. In this paper, we explore this idea, highlighting how lived experience can bring about unpredictable changes in an individual's values and preferences. We examine the implications of such "transformative experiences" for advance care planning, using the hypothetical case study of Jean, an older person with advanced kidney disease. Finally, we consider consequences for clinical practice and how an understanding of transformative experience might enhance current approaches to advance care planning., (Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice., Objectives: We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner., Design: To develop and model the intervention, we applied multiple study methods including a literature review, expert discussions and individual and group interviews with nursing home staff and management. We recruited participants through convenience sampling., Setting and Participants: Management and staff (n = 17) from five nursing homes in Flanders (Belgium), a multidisciplinary expert group and a palliative care nurse-trainer., Methods: The work was carried out by means of 1) operationalization of key intervention components-identified as part of a previously developed theory on how advance care planning is expected to lead to its desired outcomes in nursing homes-into specific activities and materials, through expert discussions and review of existing advance care planning programs; 2) evaluation of feasibility and acceptability of the program through interviews with nursing home management and staff and expert revisions; and 3) standardized description of the final program according to the TIDieR checklist. During step 2, we used thematic analysis., Results: The original program with nine key components was expanded to include ten intervention components, 22 activities and 17 materials to support delivery into routine nursing home care. The final ACP+ program includes ongoing training and coaching, management engagement, different roles and responsibilities in organizing advance care planning, conversations, documentation and information transfer, integration of advance care planning into multidisciplinary meetings, auditing, and tailoring to the specific setting. These components are to be implemented stepwise throughout an intervention period. The program involves the entire nursing home workforce. The support of an external trainer decreases as nursing home staff become more autonomous in organizing advance care planning., Conclusions: The multicomponent ACP+ program involves residents, family, and the different groups of people working in the nursing home. It is deemed feasible and acceptable by nursing home staff and management. The findings presented in this paper, alongside results of the subsequent randomized controlled cluster trial, can facilitate comparison, replicability and translation of the intervention into practice., Competing Interests: The authors have declared that no competing interests exist.

BackgroundThe importance of advance care planning (ACP) has been highlighted by the advent of life-threatening COVID-19. Anecdotal evidence suggests changes in implementation of policies and procedures is needed to support uptake of ACPs. We investigated the barriers and enablers of ACP in the COVID-19 context and identify recommendations to facilitate ACP, to inform future policy and practice.MethodsWe adopted the WHO recommendation of using rapid reviews for the production of actionable evidence for this study. We searched PUBMED from January 2020 to April 2021. All study designs including commentaries were included that focused on ACPs during COVID-19. Preprints/unpublished papers and Non-English language articles were excluded. Titles and abstracts were screened, full-texts were reviewed, and discrepancies resolved by discussion until consensus.ResultsFrom amongst 343 papers screened, 123 underwent full-text review. In total, 74 papers were included, comprising commentaries (39) and primary research studies covering cohorts, reviews, case studies, and cross-sectional designs (35). The various study types and settings such as hospitals, outpatient services, aged care and community indicated widespread interest in accelerating ACP documentation to facilitate management decisions and care which is unwanted/not aligned with goals. Enablers of ACP included targeted public awareness, availability of telehealth, easy access to online tools and adopting person-centered approach, respectful of patient autonomy and values. The emerging barriers were uncertainty regarding clinical outcomes, cultural and communication difficulties, barriers associated with legal and ethical considerations, infection control restrictions, lack of time, and limited resources and support systems.ConclusionThe pandemic has provided opportunities for rapid implementation of ACP in creative ways to circumvent social distancing restrictions and high demand for health services. This review suggests the pandemic has provided some impetus to drive adaptable ACP conversations at individual, local, and international levels, affording an opportunity for longer term improvements in ACP practice and patient care. The enablers of ACP and the accelerated adoption evident here will hopefully continue to be part of everyday practice, with or without the pandemic.

Introduction: The coronavirus pandemic (COVID-19) has affected the functioning and capacity of healthcare systems worldwide. COVID-19 has also disproportionately affected older adults, including those living with dementia. In the context of COVID-19, decision-making surrounding place of care and place of death in this population involves significant new challenges. Objectives: To explore key factors that influence place of care and place of death decisions in older adults. A secondary aim was to investigate key factors that influence the process and outcome of these decisions in older adults. To apply findings from current evidence to the context of COVID-19. Methods: Rapid review of reviews, undertaken using WHO guidance for rapid reviews. Ten papers were included for full data extraction. These papers were published between 2005-2020. Data extracted was synthesised using narrative synthesis, with thematic analysis and tabulation. Results: Papers included discussed actual place of death, as well as preferred. Results were divided into papers that explored the process of decision-making, and those that explored decision-making outcomes. Factors such as caregiver capacity, the availability of multidisciplinary teams, cultural appropriateness of care packages and advanced care planning were found to be key. Conclusions: The process and outcomes of decision-making for older people are affected by many factors - all of which have the potential to influence both patients and caregivers experience of illness and dying. Within the context of COVID-19, such decisions may have to be made rapidly and be reflexive to changing needs of systems and of families and patients. [ABSTRACT FROM AUTHOR]

Background: Missing data are common in end-of-life care studies, but there is still relatively little exploration of which is the best method to deal with them, and, in particular, if the missing at random (MAR) assumption is valid or missing not at random (MNAR) mechanisms should be assumed. In this paper we investigated this issue through a sensitivity analysis within the ACTION study, a multicenter cluster randomized controlled trial testing advance care planning in patients with advanced lung or colorectal cancer.Methods: Multiple imputation procedures under MAR and MNAR assumptions were implemented. Possible violation of the MAR assumption was addressed with reference to variables measuring quality of life and symptoms. The MNAR model assumed that patients with worse health were more likely to have missing questionnaires, making a distinction between single missing items, which were assumed to satisfy the MAR assumption, and missing values due to completely missing questionnaire for which a MNAR mechanism was hypothesized. We explored the sensitivity to possible departures from MAR on gender differences between key indicators and on simple correlations.Results: Up to 39% of follow-up data were missing. Results under MAR reflected that missingness was related to poorer health status. Correlations between variables, although very small, changed according to the imputation method, as well as the differences in scores by gender, indicating a certain sensitivity of the results to the violation of the MAR assumption.Conclusions: The findings confirmed the importance of undertaking this kind of analysis in end-of-life care studies. [ABSTRACT FROM AUTHOR]

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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.

Background: As in other areas of health delivery, there is a need to ensure that end-of-life care is guided by patient centred research. A systematic review was undertaken to examine the quantity and quality of data-based research aimed at improving the (a) processes and (b) outcomes associated with delivering end-of-life care in hospital settings. Methods: Medline, EMBASE and Cochrane databases were searched between 1995 and 2015 for data-based papers. Eligible papers were classified as descriptive, measurement or intervention studies. Intervention studies were categorised according to whether the primary aim was to improve: (a) end of life processes (i.e. end-of-life documentation and discussions, referrals); or (b) end-of-life outcomes (i.e. perceived quality of life, health status, health care use, costs). Intervention studies were assessed against the Effective Practice and Organisation of Care methodological criteria for research design, and their effectiveness examined. Results: A total of 416 papers met eligibility criteria. The number increased by 13% each year (p < 0.001). Most studies were descriptive (n = 351, 85%), with fewer measurement (n = 17) and intervention studies (n = 48; 10%). Only 18 intervention studies (4%) met EPOC design criteria. Most reported benefits for end-of-life processes including end-of-life discussions and documentation (9/11). Impact on end-of-life outcomes was mixed, with some benefit for psychosocial distress, satisfaction and concordance in care (3/7). Conclusion: More methodologically robust studies are needed to evaluate the impact of interventions on end-of-life processes, including whether changes in processes translate to improved end-of-life outcomes. Interventions which target both the patient and substitute decision maker in an effort to achieve these changes would be beneficial. [ABSTRACT FROM AUTHOR]

Background: Medical oncology outpatients are a group for whom advance care planning (ACP) activities are particularly relevant. Patient views can help prioritise areas for improving end of life communication. The study aimed to determine in a sample of medical oncology outpatients: (1) the perceived importance of participating in ACP activities; (2) the proportion of patients who have ever participated in ACP activities; and (3) the proportion of patients who had not yet participated in ACP activities who were willing to do so in next month., Methods: Adult medical oncology outpatients in two Australian cancer treatment centres were consecutively approached to complete a pen-and-paper survey. Items explored perceived importance, previous participation, and willingness to participate across key ACP activities including: discussing wishes with their family or doctor; recording wishes in a written document; appointing a substitute decision maker (SDM); and discussing life-expectancy., Results: 185 participants completed the survey (51% consent rate). Most patients agreed it was important to: discuss end of life wishes with family (85%) and doctors (70%) and formally record wishes (73%). Few had discussed end of life wishes with a doctor (11%), recorded their wishes (15%); chosen a SDM (28%); discussed life expectancy (30%); or discussed end of life wishes with family (30%). Among those who had not participated in ACP, most were willing to discuss life expectancy (66%); discuss end of life wishes with family (57%) and a doctor (55%); and formally record wishes (56%) in the next month. Fewer wanted to appoint a SDM (40%)., Conclusion: Although medical oncology outpatients perceive ACP activities are important, rates of uptake are relatively low. The willingness of many patients to engage in ACP activities suggests a gap in current ACP practice. Efforts should focus on ensuring patients and families have clarity about the legal and other ramifications of ACP activities, and better education and training of health care providers in initiating conversations about end of life issues.

Advance directives emerged in the 1960s with the goal of empowering people to exert control over their future medical decisions. However, it has become apparent, over recent years, that advance directives do not sufficiently capture the temporal and relational aspects of planning treatment and care. Advance care planning (ACP) has been suggested as a way to emphasise communication between the patient, their surrogate decision maker and healthcare professional(s) in order to anticipate healthcare decisions in the event that the patient loses decision-making capacity, either temporarily or permanently. In more and more countries, ACP has become common practice in planning the treatment of terminal diseases such as cancer or amyotrophic lateral sclerosis. However, even though neurodegenerative dementia results in the gradual loss of decision-making capacity, ACP is still extremely rare. There are several reasons for this. Firstly, some people have difficulties talking about illness and death, especially when this involves anticipation. Secondly, lay people and professionals alike struggle to consider Alzheimer&rsquo;s disease and similar forms of dementia as terminal diseases. Thirdly, although patient decision-making capacity gradually decreases with the progression of dementia, the patient retains the ability to communicate and interact with surrogates and professionals until the later stages of the disease. Therefore, surrogates and professionals may feel unsure or even ambivalent when enforcing advance directives, in particular when those decisions may shorten a patient&rsquo;s life expectancy. Finally, to be effective, existing ACP interventions should be adapted to patient&rsquo;s cognitive impairments and lay out dementia-specific scenarios. Current WHO estimates indicate that by 2050 one out of four people will potentially have to take care of a relative with cognitive and communication impairments for several years. In Switzerland, the Federal Office of Public Health and the regional states have established national strategies on dementia and palliative care. These strategies emphasise the need for ACP as a means to prepare patients and their relatives for future decisions, as soon as someone is diagnosed with dementia. This moment is thus especially conducive to develop appropriate processes to prompt the elderly and people diagnosed with dementia to engage in ACP. Therefore, the aim of the present paper is to identify the benefits and challenges of ACP in dementia care, outline strategies to design appropriate procedures and tools, and provide professionals, patients and their relatives with opportunities to engage in ACP.