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

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

Aim: To explore the significance of culture, professional support in the community, social interactions and intrapersonal determinants of adults' preferences for life‐sustaining treatments and palliative care. Methods: A cross‐sectional design with a Social Ecological Model was used. Between 1 October 2012 and 31 December 2012, 474 adults aged ≥20 years living in a city of Southern Taiwan completed the survey. Data were analysed using hierarchical multiple regression. Results: The life‐sustaining measures model was significant with 15.3% (p < 0.0001) of the variance in the Modified Emmanuel Medical Directives being explained by variables of death of self and healthcare services' support. The palliative care model was significant with 18% (p < 0.0001) of the variance in the Modified Hospice Attitude Scale being explained by variables of palliative care knowledge, death of self and social interactions. However, cultural value adherence did not predict adults' preferences for life‐sustaining measures and community resources support did not predict palliative care preference. Conclusions: Findings enhance our understanding of the significance of different societal levels on adults' preferences for end‐of‐life care. Palliative care knowledge, fear of death, healthcare services' support and social interactions are essential factors that need to be taken into consideration when it comes to discussion about life‐sustaining treatments and palliative care. Summary statement: What is already known about this topic? End‐of‐life (EOL) preferences can be shaped not just by knowledge, values and individuals' attitudes but rather a host of social influences.Few studies with theoretical frameworks or models in the literature are available to provide a comprehensive understanding of factors contributing to responses at the EOL. What this paper adds? The findings advance the knowledge of the influence of social interactions, healthcare services' support, palliative care understanding and fear of death on adults' preferences for life‐sustaining treatments and palliative care.The identified relationships in the context of life‐sustaining treatments and palliative care provide practical guidelines, which can help to inform appropriate supportive interventions for EOL care planning. The implications of this paper: Healthcare services that provide a mediating structure where a person belongs should focus on enhancing community resources regarding EOL healthcare planning, knowledge about palliative care and reinforcing life and death education.The social support network and emotional ties with a person's significant others should also be taken into consideration to facilitate EOL healthcare planning and to promote good quality of life at EOL. [ABSTRACT FROM AUTHOR]

Background: The impact of Australia's diverse population on the aged care sector has been acknowledged, with the Royal Commission into Aged Care Quality and Safety findings providing evidence of the importance of population diversity for consumer-directed and person-centred care. Similarly, the Aged Care Quality Standards and Aged Care Diversity Framework acknowledge the diversity of Australia's ageing population and potential implications for equitable access to care and the ensuing importance of culturally appropriate and culturally safe care. This paper reports on the development of informational web pages and utilisation findings for use by the aged care workforce supporting diverse populations. Methods: Content was created for the End of Life Directions for Aged Care website, based on rapid review findings relating to barriers and limitations for people accessing equitable care in the aged care and palliative care sectors. Results: Website pages containing embedded links to useful content and resources for health professionals and care workers who work with older diverse adults are shown to be well received among users. Conclusions: As Australia's future population will age with increasing diversity markers, with implications for aged care and palliative care service provision, workforce access to up-to-date, relevant and evidence-informed information on best practice non-clinical support for individuals from diverse backgrounds towards the end of life promotes a person-centred care approach. Access data shows that the website content is being utilised increasingly over time and suggests that it is filling a gap in comprehensive and accessible end of life resources that have been missing from the Australian aged care and palliative care workforce. Consumer-directed and person-centred care is crucial in appropriately servicing all older adults, given each older adult has a diverse background, which impacts their aged care experiences. This paper reports on the development of web pages designed to support the knowledge and information needs of the aged care workforce. There is a need for such resources within this sector to inform culturally appropriate and safe care. [ABSTRACT FROM AUTHOR]

Advance directives are intended to extend patient autonomy by enabling patients to prospectively direct the care of their future incapacitated selves. There has been much discussion about issues such as whether the future incompetent self is identical to the agent who issues the advance directive or whether advance directives can legitimately secure patient autonomy. However, there is another important question to ask: to what extent and in what conditions is it ethically appropriate for one to limit the liberty or agency of one's future incompetent self by issuing an advance directive? In this paper, I use a virtue‐ethical approach to explore this question, focusing on the case of an advance directive for the future self with moderate dementia. First, I examine virtuous attitudes with regard to autonomy and argue that one can manifest vices or ethically undesirable character traits in trying to intervene in the future self's life. In particular, I argue that this case can manifest vices such as disdainfulness, intellectual arrogance, and self‐dictatorship, which is the vice of trying to control one's life to an excessive degree, and that a self‐dictator fails to give due moral consideration to the future self's liberty or agency. I then introduce the Daoist idea of wu‐wei, which recommends embracement of what happens in one's life, as one of the possible remedies for the overemphasis on the value of autonomy and control. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objective: Managing mental health patients during the COVID-19 pandemic has been a global challenge. Current workforce arrangements tend to separate those skilled in caring for highly infectious medical patients from those whose specialism is in managing co-morbid mental health, substance misuse and/or behaviours of concern, including potential non-compliance with community or health care directives. This paper reports an innovative service development through the emergency establishment of a temporary COVID-positive mental health ward in response to a local outbreak in Melbourne. Method: A case study of service reorientation is presented, examining barriers and enablers to effective care of co-morbid mental illness, addiction and COVID-19. Results: Establishing a skilled multidisciplinary workforce across mental health and infectious disease is the most important consideration in optimising care. Other issues included suitable physical space, security arrangements and inter-disciplinary communication. Conclusions: The paper holds insights for managing mental health care during potential future infectious disease outbreaks across the country. [ABSTRACT FROM AUTHOR]

Background: Conducting research with dying persons can be controversial and challenging due to concerns for the vulnerability of the dying and the potential burden on those who participate with the possibility of little benefit. Aim: To conduct an integrative review to answer the question 'What are dying persons' perspectives or experiences of participating in research? Design: A structured integrative review of the empirical literature was undertaken. Data sources: Cumulative Index Nursing and Allied Health Complete, PsycINFO, MEDLINE, Informit and Embase databases were searched for the empirical literature published since inception of the databases until February 2017. Results: From 2369 references, 10 papers were included in the review. Six were qualitative studies, and the remaining four were quantitative. Analysis revealed four themes: value of research, desire to help, expression of self and participation preferences. Dying persons value research participation, regarding their contribution as important, particularly if it provides an opportunity to help others. Participants perceived that the potential benefits of research can and should be measured in ways other than life prolongation or cure. Willingness to participate is influenced by study type or feature and degree of inconvenience. Conclusion: Understanding dying persons' perspectives of research participation will enhance future care of dying persons. It is essential that researchers do not exclude dying persons from clinically relevant research due to their prognosis, fear or burden or perceived vulnerability. The dying should be afforded the opportunity to participate in research with the knowledge it may contribute to science and understanding and improve the care and treatment of others. [ABSTRACT FROM AUTHOR]

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: Specialist palliative care (SPC) services address the needs of people with advanced illness. Meta-analyses to date have been challenged by heterogeneity in SPC service models and outcome measures and have failed to produce an overall effect. The best service models are unknown. We aimed to estimate the summary effect of SPC across settings on quality of life and emotional wellbeing and identify the optimum service delivery model. Methods and findings: We conducted a systematic review with meta-analysis and meta-regression. Databases (Cochrane, MEDLINE, CINAHL, ICTRP, clinicaltrials.gov) were searched (January 1, 2000; December 28, 2023), supplemented with further hand searches (i.e., conference abstracts). Two researchers independently screened identified studies. We included randomized controlled trials (RCTs) testing SPC intervention versus usual care in adults with life-limiting disease and including patient or proxy reported outcomes as primary or secondary endpoints. The meta-analysis used, to our knowledge, novel methodology to convert outcomes into minimally clinically important difference (MID) units and the number needed to treat (NNT). Bias/quality was assessed via the Cochrane Risk of Bias 2 tool and certainty of evidence was assessed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) tool. Random-effects meta-analyses and meta-regressions were used to synthesize endpoints between 2 weeks and 12 months for effect on quality of life and emotional wellbeing expressed and combined in units of MID. From 42,787 records, 39 international RCTs (n = 38 from high- and middle-income countries) were included. For quality of life (33 trials) and emotional wellbeing (22 trials), statistically and clinically significant benefit was seen from 3 months' follow-up for quality of life, standardized mean difference (SMD in MID units) effect size of 0.40 at 13 to 36 weeks, 95% confidence interval (CI) [0.21, 0.59], p < 0.001, I2 = 60%). For quality of life at 13 to 36 weeks, 13% of the SPC intervention group experienced an effect of at least 1 MID unit change (relative risk (RR) = 1.13, 95% CI [1.06, 1.20], p < 0.001, I2 = 0%). For emotional wellbeing, 16% experienced an effect of at least 1 MID unit change at 13 to 36 weeks (95% CI [1.08, 1.24], p < 0.001, I2 = 0%). For quality of life, the NNT improved from 69 to 15; for emotional wellbeing from 46 to 28, from 2 weeks and 3 months, respectively. Higher effect sizes were associated with multidisciplinary and multicomponent interventions, across settings. Sensitivity analyses using robust MID estimates showed substantial (quality of life) and moderate (emotional wellbeing) benefits, and lower number-needed-to-treat, even with shorter follow-up. As the main limitation, MID effect sizes may be biased by relying on derivation in non-palliative care samples. Conclusions: Using, to our knowledge, novel methods to combine different outcomes, we found clear evidence of moderate overall effect size for both quality of life and emotional wellbeing benefits from SPC, regardless of underlying condition, with multidisciplinary, multicomponent, and multi-setting models being most effective. Our data seriously challenge the current practice of referral to SPC close to death. Policy and service commissioning should drive needs-based referral at least 3 to 6 months before death as the optimal standard of care. Christina Ramsenthaler and colleagues systematically reviewed randomized controlled trials investigating the effectiveness of specialist palliative care, to assess which intervention model components and configurations are most effective in improving quality of life or emotional wellbeing. Author summary: Why was this research done?: Specialist palliative care (SPC) services provide a complex intervention that addresses the holistic needs of individuals with life-limiting conditions and their families. Different intervention models include a variation of different disciplines (doctors, nurses, psychologists, physiotherapists, spiritual care workers, social care workers, etc.), configurations (e.g., whether out-of-hours care is provided), and settings (hospital, hospice, community, inpatient, outpatient, etc.). The overall effectiveness of SPC on quality of life and emotional wellbeing is undetermined due to large variation in intervention models and heterogeneity in outcome measures used to measure quality of life and emotional wellbeing. What did the researchers do and find?: We systematically reviewed randomized controlled trials (RCTs) investigating the effectiveness of SPC, to assess which intervention model components and configurations are most effective in improving quality of life or emotional wellbeing. We used a method to combine effects across the range of outcome measures by converting raw scores into units of meaningful improvement. For the summary effects of 39 RCTs, quality of life and emotional outcomes improved from 3 months of follow-up onwards. SPC yielded a clinically meaningful effect on quality of life of moderate size. The effect was larger at 3 to 6 months than at later follow-up. For emotional wellbeing, similar effects were seen. Overall, the effect was larger for quality of life than for emotional wellbeing. To address the large variation in intervention models, we directly scored the number of professional groups and service elements to understand how this variation relates to outcomes. Higher effect sizes were associated with multidisciplinary and multicomponent SPC interventions, provided across healthcare settings. What do these findings mean?: Our findings challenge the current practice of referring patients with life-limiting illness to SPC close to death at the end of life. Policy and service commissioning should drive needs-based referral at least 3 to 6 months before death as the optimal standard of care. The most effective models are multidisciplinary, multicomponent (i.e., providing more than symptom control or advance care planning) and multi-setting. Honoring the complex and holistic needs of patients and families by including different service elements offered by various professional groups working across settings is paramount for effective palliative care. Meaningful changes were not necessarily derived in specified palliative populations. Some of the effects may therefore be under- or overestimated. [ABSTRACT FROM AUTHOR]

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

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. [ABSTRACT FROM AUTHOR]

Background: In 2016 a French law created a new right for end-of-life patients: deep and continuous sedation maintained until death, with discontinuation of all treatments sustaining life such as artificial nutrition and hydration. It was totally unprecedented that nutrition and hydration were explicitly defined in France as sustaining life treatments, and remains a specificity of this law. End- of-life practices raise ethical and practical issues, especially in Europe actually. We aimed to know how oncology professionals deal with the law, their opinion and experience and their perception. Methods: Online mono-centric survey with closed-ended and open-ended questions in a Cancer Comprehensive Centre was elaborated. It was built during workshops of the ethics committee of the Institute, whose president is an oncologist with a doctoral degree in medical ethics. 58 oncologists and 121 nurses—all professionals of oncological departments -, received it, three times, as mail, with an information letter. Results: 63/ 179 professionals answered the questionnaire (35%). Conducting end-of-life discussions and advanced care planning were reported by 46/63 professionals. In the last three months, 18 doctors and 7 nurses faced a request for a deep and continuous sedation maintained until death, in response to physical or existential refractory suffering. Artificial nutrition and even more hydration were not uniformly considered as treatment. Evaluation of the prognosis, crucial to decide a deep and continuous sedation maintained until death, appears to be very difficult and various, between hours and few weeks. Half of respondents were concerned that this practice could lead to or hide euthanasia practices, whereas for the other half, this new law formalised practices necessary for the quality of palliative care at the end-of-life. Conclusion: Most respondents support the implementation of deep and continuous sedation maintained until death in routine end-of-life care. Nevertheless, difficulty to stop hydration, confusion with euthanasia practices, ethical debates it provokes and the risk of misunderstanding within teams and with families are significant. This is certainly shared by other teams. This could lead to a multi-centric survey and if confirmed might be reported to the legislator. Key messages: What is already known about the topic? Studies have explored the ethics of choices, such as withholding or withdrawing treatments, moral positions to euthanasia, sedation practices or evaluation of end-of-life prognosis, but none have explored, in real life, health care professionals' opinion and experience of all these aspects combined, in palliative cancer care. What this paper adds: This study highlights the discrepancy between some elements of the law and opinions of carers, along with the risk of conflict within teams and with families. It also highlights the risk of drifting towards euthanasia. Implications for practice, theory or policy: this study could lead to a multi-centric national study and could, if confirmed, add the voice of professionals to the ethical debate on end-of-life practices in France, which could be reported to the legislator. It could also lead colleagues of abroad to analyse practices in regard of their national laws on end-of-life. [ABSTRACT FROM AUTHOR]

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

Background: Mental capacity legislation in the UK is designed to safeguard the rights of people who may need support, or may be unable, to make autonomous decisions. Very limited evidence has been published about the impact of the COVID‐19 pandemic on the application of mental capacity legislation and, to our knowledge, none on the ability of speech and language therapists (SLTs) to support people with communication disabilities to engage in decision‐making. Aims: To describe how UK SLTs supported people with communication disabilities to make decisions and participate in mental capacity assessments, best interests decision‐making and advance care planning during the COVID‐19 pandemic. Methods & Procedures: This descriptive, cross‐sectional study used an online survey to collect quantitative and qualitative data about SLTs' practice experiences between August and November 2020. SLTs working with a range of adult clinical populations in different care settings were sampled purposively from all UK jurisdictions. Participants were recruited through professional networks and social media. Quantitative data were summarized using descriptive statistics. Qualitative data were analysed thematically. Outcomes & Results: Data were collected from 107 SLTs working in a range of settings across all four UK nations. The sample included SLTs working with people with neurological conditions, learning disabilities, mental health conditions and acute confusion. The need for SLT support appeared to increase during the pandemic. Most respondents were still able to offer support; however, the amount and nature of support varied. Quality of support was impacted by adjustments associated with social distancing and infection control restrictions. Personal protective equipment (PPE) was identified as a barrier to communication. Indirect working methods (e.g., telehealth) were inaccessible to some people with communication disabilities. Most respondents felt confident that legal requirements were upheld, but suggested this group was less able to engage in decision‐making and had reduced access to support to manage their own health conditions. Conclusions & Implications: Some SLT services were limited in their ability to meet the decision‐making support needs of people with communication disabilities during the COVID‐19 pandemic due to structural and systemic barriers. This suggests that existing inequities in the provision of care for people with communication disabilities in the UK were amplified during the pandemic. What this paper adds: What is already known on the subject: People with communication disabilities may require support from healthcare professionals, including SLTs, to make decisions and communicate their wishes and preferences about their care, in line with mental capacity legislation. There is a lack of published evidence relating to how changes in staff deployment and resource during the COVID‐19 pandemic may have impacted on the ability of SLTs to provide this support. What this paper adds to existing knowledge: This study provides novel evidence about the ways in which UK SLTs supported people with communication disabilities to engage in mental capacity assessments, best interests decision‐making and advance care planning during the COVID‐19 pandemic. In some cases, the amount and quality of decision‐making support available was affected negatively due to changes in healthcare delivery and resource management and SLT working practices. What are the potential or actual clinical implications of this work?: This study suggests that some people with communication disabilities experienced greater barriers to receiving professional support to maximize their autonomy and manage their health conditions during the COVID‐19 pandemic. Speech and language therapy services and healthcare commissioners should consider how best to ensure equitable service delivery to this population in resource‐limited situations. [ABSTRACT FROM AUTHOR]

We live in a death-denying society, but not planning for death and dying in advance might leave individuals and the family with unfinished business and regrets. Chinese societies are rapidly aging. Thus, it has been increasingly significant to provide death education to enlighten the public on the importance of making plans and the information of current end-of-life care services and support. However, such educational programs are lacking in the literature. To fill the void, the team designed a culturally sensitive death education program and tested it with community-dwelling older adults in China. In this paper, we described the program design and reported some practice-related observations on the individual, family, health care providers, organization, and legal levels, hoping to shed light on designing and implementing death education programs for older adults in Chinese societies. [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. [ABSTRACT FROM AUTHOR]

Background: Facilitating advance care planning with community-dwelling frail elders can be challenging. Notably, frail elders' vulnerability to sudden deterioration leads to uncertainty in recognising the timing and focus of advance care planning conversations. Aim: To understand how advance care planning can be better implemented for community-dwelling frail elders and to develop a conceptual model to underpin intervention development. Design: A structured integrative review of relevant literature. Data sources: CINAHL, Embase, Ovid Medline, PsycINFO, Cochrane Library, and University of York Centre for Reviews and Dissemination. Further strategies included searching for policy and clinical documents, grey literature, and hand-searching reference lists. Literature was searched from 1990 until October 2018. Results: From 3043 potential papers, 42 were included. Twenty-nine were empirical, six expert commentaries, four service improvements, two guidelines and one theoretical. Analysis revealed nine themes: education and training, personal ability, models, recognising triggers, resources, conversations on death and dying, living day to day, personal beliefs and experience, and relationality. Conclusion: Implementing advance care planning for frail elders requires a system-wide approach, including providing relevant resources and clarifying responsibilities. Early engagement is key for frail elders, as is a shift from the current advance care planning model focussed on future ceilings of care to one that promotes living well now alongside planning for the future. The proposed conceptual model can be used as a starting point for professionals, organisations and policymakers looking to improve advance care planning for frail elders. [ABSTRACT FROM AUTHOR]

Young adults (N = 80) participated in advance care planning (ACP) as part of a death and dying course and submitted reflection papers on their experiences. These papers were analyzed using directed qualitative content analysis methods. Among the findings, participants almost exclusively chose a parent or other family member as a Health Care Agent. Twenty-five percent expressed concern about placing burden on their agent, but felt their advance directives (AD) would ease that burden. For many, previous experiences with death helped shape their wishes. This research has practice implications for recruiting more healthy young adults in completing their AD. [ABSTRACT FROM AUTHOR]

AimTo synthesize information about management of end of life care in people with dementia using review papers.BackgroundThere are increasing numbers of people being diagnosed with dementia worldwide, and the needs of people with dementia and their carers at the end of life may be different from those with other chronic diseases. By highlighting the challenges of palliative care in persons with dementia and the ways they are best managed, practitioners in primary care may be able to improve services for this group of people at the end of life.MethodsA search of electronic databases of English language papers published in peer-reviewed journals, 2000–2011 inclusive was undertaken using broad terms related to palliative care and dementia. 6167 papers were identified. Titles and abstracts were read. Papers were included if they were literature reviews of palliative or end of life care for people with dementia/Parkinson's disease/Lewy body dementia/cognitive impairment/Alzheimer's disease or any other cognitive impairment, in any setting (hospital, care home, community) and covering people of all ages. Papers were excluded if they covered palliative care focusing on other conditions, or were about an aspect of dementia care and treatment not related to palliative care.FindingsOur critical synthesis generated five main themes from this review of the reviews: (1) carers’ (family caregivers’) experiences; (2) person-centred care; (3) practice (including advance care planning, pain and comfort, nutrition, medical complications and minimizing the distress of behavioural symptoms); (4) system factors, including ethical dilemmas, decision making, information, and training; and (5) research priorities. There appears to be good evidence on the care and management of patients with dementia at the end of life which can be used to influence policy development and emerging specificity about research priorities in palliative care practice for people with dementia. [ABSTRACT FROM PUBLISHER]

Walking outdoors has many benefits which can improve quality of life for people living with dementia. However, due to the risk of getting lost, many people with dementia are denied the opportunity to be outdoors. There has been increased interest in using global positioning systems (GPS) to facilitate independent outdoor mobility for people with dementia, but this interest has been accompanied by ethical debate focussing on the rights of an individual with dementia to maintain privacy and autonomy. The objective was to establish what people, those with dementia, those who provide support for people with dementia and wider society perceive to be the issues around GPS use. Method: An adapted qualitative systematic review was conducted between November 2018 and December 2018. Medical, social and technological databases were searched for papers with no date restriction. Initial search terms displayed nine hundred and sixty citations. Titles and if necessary abstracts were read to determine which studies might be potentially relevant. Forty papers were identified as potentially relevant and their abstracts and references examined. This produced a further four potential studies. Following application of the exclusion criteria thirty papers were eliminated.Fourteen were accepted, appraised and thematically analyzed. Results: The ethical debate was reflected in the opinions of the study respondents. There was a willingness to relinquish some privacy for safety but people with dementia were not prepared to sacrifice their autonomy—believing they alone should decide whether GPS was appropriate. Conclusion: GPS was felt to have the potential to facilitate independent outdoor walking, but systems need to be tailored to the individual. There is also a need to contradict negative societal perceptions of the ability of people with dementia to live a fulfilled life which is in danger of diminishing GPS's potential to improve quality of life for people with dementia. Whilst dementia is a disabling and incurable disease, taking advantage of technological developments such as GPS can diminish its negative impact. Appropriate development and use of GPSs offers the potential to enable people with dementia to explore the outdoors independently with subsequent improvement in self-confidence, independence and autonomy. Professionals working with people with dementia need to be aware of the GPS technology available and the ethical issues involved to support the use of GPS. [ABSTRACT FROM AUTHOR]

As Muslim populations in non-Muslim majority nations grow and age, they will increasingly require culturally appropriate healthcare. Delivering such care requires understanding their experiences with, as well as preferences regarding, end-of-life healthcare. To examine the experiences, needs, and challenges of Muslim patients and caregivers with end-of-life, hospice, and palliative care. A systematic literature review using five databases (MEDLINE, Scopus, Web of Science, CINAHL, Cochrane Library) and key terms related to Islam and end-of-life healthcare. Papers were limited to English-language empirical studies of adults in non-Muslim majority nations. After removing duplicates, titles, abstracts, and articles were screened for quality and reviewed by a multidisciplinary team. From an initial list of 1867 articles, 29 articles met all inclusion criteria. Most studies focused on end-of-life healthcare not related to palliative or hospice services and examined Muslim patient and caregiver experiences rather than their needs or challenges. Content analysis revealed three themes: (1) the role of family in caregiving as a moral duty and as surrogate communicators; (2) gaps in knowledge among providers related to Muslim needs and gaps in patient/family knowledge about advance care planning; and (3) the influence of Islam on Muslim physicians' perspectives and practices. There is scant research on Muslim patients' and caregivers' engagement with end-of-life healthcare in non-Muslim majority nations. Existing research documents knowledge gaps impeding both Muslim patient engagement with end-of-life care and the delivery of culturally appropriate healthcare. [ABSTRACT FROM AUTHOR]

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

Objectives In the Netherlands, a case of euthanasia of an incompetent patient with dementia and an advance euthanasia directive (AED) caused great societal unrest and led to a petition signed by more than 450 physicians. In this paper, we investigate these physicians' reasons and underlying motives for supporting the 'no sneaky euthanasia' petition, with the aim of gaining insight into the dilemmas experienced and to map out topics in need of further guidance. Methods Twelve in-depth interviews were conducted with physicians recruited via the webpage 'no sneaky euthanasia'. General topics discussed were: reasons for signing the petition, the possibilities of euthanasia in incompetent patients and views on good end-of-life care. Data were interpreted using thematic content analysis and the framework method. Results Reasons for supporting the petition are dilemmas concerning 'sneaky euthanasia', the over-simplified societal debate, physicians' personal moral boundaries and the growing pressure on physicians. Analysis revealed three underlying motives: aspects of handling a euthanasia request based on an AED, good end-of-life care and the doctor as a human being. Conclusions Although one of the main reasons for participants to support the petition was the opposition to 'sneaky euthanasia', our results show a broader scope of reasons. This includes their experience of growing pressure to comply with AEDs, forcing them to cross personal boundaries. The underlying motives are related to moral dilemmas around patient autonomy emerging in cases of decision-making disabilities in advanced dementia. To avoid uncertainty regarding patients' wishes, physicians express their need for reciprocal communication. [ABSTRACT FROM AUTHOR]

Purpose: Compassionate release is a process that allows for the early release or parole of some incarcerated people of advanced age, with life-limiting illness, complex medical care needs or significant functional decline. Despite the expansion of State and Federal compassionate release programs, this mechanism for release remains underutilized. Health-care professionals are central to the process of recommending compassionate release, but few resources exist to support these efforts. The purpose of this paper is to provide a guide for health-care professionals requesting compassionate release for patients who are incarcerated. Design/methodology/approach: This study is stepwise guide for health-care professionals requesting compassionate release for patients who are incarcerated. Findings: This study describes the role of the health-care professional in requesting compassionate release and offers guidance to help them navigate the process of preparing a medical declaration or request for compassionate release. Originality/value: No prior publications have created a step-wise guide of this nature to aid health-care professionals through the compassionate release process. [ABSTRACT FROM AUTHOR]

This paper discusses the advance decision, which was the subject-matter of Re PW (Jehovah's Witness: Validity of Advance Decision) [2021] EWCOP 52. An advance decision is basically a decision, made by a person with mental capacity, that they should not be given a particular medical treatment if they lack such capacity later. This paper considers and comments on some of the terms used to describe the advance decision, some principles relating to it, some arguments for and against it, whether it is revocable, and its standing in relation to the Mental Health Act 1983, as amended. Two limits of an advance decision (it is revocable and can be overridden by the Mental Health Act 1983, s 63) are exposed by the paper. [ABSTRACT FROM AUTHOR]

The Family Perceptions of Physician-Family Caregiver Communication scale (FPPFC) was developed to assess quality of physician-family end-of-life communication in nursing homes. However, its validity has been tested only in the USA and the Netherlands. The aim of this paper is to evaluate the FPPFC construct validity and its reliability, as well as the psychometric characteristics of the items comprising the scale. Data were collected in cross-sectional study in Belgium, Finland, Italy, the Netherlands and Poland. The factorial structure was tested in confirmatory factor analysis. Item parameters were obtained using an item response theory model. Participants were 737 relatives of nursing home residents who died up to 3 months prior to the study. In general, the FPPFC scale proved to be a unidimensional and reliable measure of the perceived quality of physician-family communication in nursing home settings in all five countries. Nevertheless, we found unsatisfactory fit to the data with a confirmatory model. An item that referred to advance care planning performed less well in Poland and Italy than in the Northern European countries. In the item analysis, we found that with no loss of reliability and with increased coherency of the item content across countries, the full 7-item version can be shortened to a 4-item version, which may be more appropriate for international studies. Therefore, we recommend use of the brief 4-item FPPFC version by nursing home managers and professionals as an evaluation tool, and by researchers for their studies as these four items confer the same meaning across countries. [ABSTRACT FROM AUTHOR]

Objective: Substitute decision makers (SDMs) can be required to make difficult health care decisions on behalf of individuals lacking decision-making capacity. Online resources may be helpful in preparing and supporting SDMs. This study systematically explored the frequency, content and usability of Australian online resources containing health care substitute decision-making content written for consumers. Methods: In April 2019, Google searches were conducted to identify online resources containing health care substitute decision-making content for consumers. Analysis comprised mapping resource characteristics, including target audience (individual-specific, SDM-specific, mixed) and thematic analysis of content. Usability was assessed using the Patient Education Materials Assessment Tool (PEMAT). Results: Of the 61 resources identified, the most frequent were webpages (57%), individual-specific (43%) and those produced by government organisations (31%). Only 15 resources (24%) were written for SDMs. Content themes identified were: defining the scope of the SDM role (93%); recommended traits or characteristics of SDMs (80%); instructions or principles regarding standards for decision making (75%); duties of SDMs (70%); and supports (46%), rights (16%), barriers (8%) and benefits (5%) for SDMs. The median (interquartile range) PEMAT scores (out of 100) were 66 (27) for understandability and 60 (55) for actionability. Conclusions: SDMs have a vital role in making decisions for people lacking decision-making capacity. Online resources are a potential source of information and support for SDMs in Australia. This study identified key gaps in availability, content and usability of existing SDM resources, highlighting the need for the further development of such resources. We suggest that future resource development include SDMs in the design and evaluation processes. What is known about the topic?: An aging population and a greater need for decisions to be made on behalf of others who lack capacity means that health care substitute decision-making is occurring more frequently. Appointing one or more SDMs may occur as part of the advance care planning process. However, being a healthcare SDM can be difficult and stressful. People frequently use the Internet to search for health-related information. What does this paper add?: This paper systematically examined the frequency, content and usability of existing Australian online resources with substitute decision-making content written for a consumer audience in English, and identified key gaps in online resources available to support SDMs. What are the implications for practitioners?: Although there is a need for resources written for SDMs, authors of online resources need to pay careful attention to the purpose, content and usability of their resource. Future resource development should include input from SDMs and involve them in evaluation to assess whether the resources meet target audience needs. [ABSTRACT FROM AUTHOR]

Social workers and nurses, as members of interprofessional palliative medicine teams, faced unfamiliar challenges and opportunities as they endeavored to provide humanistic care to patients and families during the coronavirus (COVID-19) pandemic. Typical methods for engaging patients and families in medical decision-making became thwarted by visitation restrictions and patients' dramatic health declines. This paper presents an innovative social work and nursing intervention aimed at enhancing humanistic patient/family care and advanced directive dialogs. Through incorporating a narrative synthesis of the teams' reflective journals from COVID-19, the paper chronicles the intervention implementation, patient/family responses, and team members' personal and professional meaning-making processes. [ABSTRACT FROM AUTHOR]

Background: Given the increase in the number of deaths within long‐term care facilities (LTCFs), the need for palliative and end‐of‐life (EOL) care education among such facilities has been increasing. As such, a systematic synthesis of global palliative and EOL care educational approaches and evaluation can aid further educational development. Objective: To synthesise the current literature on palliative and EOL care educational interventions for staff working in LTCFs and identify barriers to, and facilitators of, intervention implementation. Methods: The study used an integrative review framework wherein indexed databases, namely, CINAHL, EMBASE, MEDLINE, PsycINFO, Web of Science, Cochrane Library and Japan Medical Abstract Society, were systematically searched for studies published in English and Japanese between 2007 and 2019. Search terms that are related to palliative care, LTCF, and education were combined to increase search sensitivity. The quality of the papers was assessed using Joanna Briggs Institute Critical Appraisal Tools and the Mixed‐Methods Appraisal Tool. Results: A total of 52 studies were included in the review. Our results suggested that although studies in this area and setting have been evolving, suboptimal developmental research and educational practices, global variability and unstandardised approaches to education and lacking viewpoints from service users have remained. Barriers to intervention implementation were also reported due to the specific characteristics of LTCFs, which include high staff turnover and considerable variation in professional skills and experience. Conclusions: Given the different LTCF types, systems and policies across each country or region, further research on standardised educational interventions with contextual considerations using large‐scale studies with robust methodology is needed to meet the increasing demand for palliative and EOL care among the global ageing population. Implications for practice: Palliative and EOL care educational intervention for LTCF staff need to include more consideration of context, organisational culture and the user involvement throughout the process of education and research to enhance the quality of care in this complex setting. [ABSTRACT FROM AUTHOR]

Professor Latham has written a thought-provoking commentary1 on my paper about advance directives.2 I am grateful for this opportunity to integrate the debate on the moral binding nature of these manifestations of will. [ABSTRACT FROM AUTHOR]

Objectives: This study describes the model of care provided by an integrated respiratory and palliative care service for patients with advanced lung disease, and assesses the potential impact of the service on acute hospital utilisation and cost. Methods: This study implemented an integrated specialist care service at a single tertiary teaching hospital in Melbourne, Victoria, Australia. The service provided disease-orientated care, alongside symptom management and advance care planning, and comprised both outpatient clinic (OPC) and home visit (HV) capacity for those with barriers to accessing OPC. Acute hospital utilisation and hospital cost were analysed with a paired t -test 90 days before/after the first physician review. Results: Between April 2017 and 2019, 51 patients received 59 HVs, whereas between July 2018 and 2020, 58 patients received 206 OPC reviews. Acute hospital admissions decreased by 51% in the HV cohort (P < 0.05) and by 46% in the OPC cohort (P = 0.01); total bed days of acute admissions decreased by 29% in the HV cohort (P = n.s.), and by 60% in the OPC cohort (P < 0.05); and specialist outpatient clinic attendances decreased in the OPC cohort by 55% (P < 0.01). There was a decrease in hospital cost for the HV cohort by 3% (cost savings of A$18 579), and in the OPC cohort by 23% (cost savings of A$109 149). Conclusions: This model of care provided specialist respiratory management with seamless integration of palliative care, with the capacity for home visits. There was a decrease in acute hospital utilisation and overall cost savings observed in both HV and OPC cohorts. What is already known about the topic? International guidelines recommend palliative care for patients with advanced lung disease, although the ideal model for this care is uncertain. What does this paper add? This model of integrated respiratory and palliative care provided disease-orientated care, alongside symptom management and advance care planning, with unique physician home visit capacity, which addressed barriers to receiving specialist care. What are the implications for practitioners? This study describes a model of integrated respiratory and palliative care that can positively impact acute hospital utilisation and provide cost savings. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to examine advance decisions to refuse treatment (ADRTs) in the context of the COVID-19 (Coronavirus 2019) pandemic. This study considers the development of ADRTs, the lack of take up and confusion among the general public, clinicians and health and social care staff. Design/methodology/approach: The paper is a conceptual piece that reflects on ADRTs in the particular context of COVID-19. It considers professional concerns and pronouncements on ADRTs. Findings: ADRTs have a low take up currently. There is misunderstanding among public and professionals. There is a need for raising awareness, developing practice and a need to allay fears of misuse and abuse of ADRTs in clinical, health and social care settings. Practical implications: The authors make recommendations that reflexive training and awareness become the norm in health and social care, that reform of ADRTs is undertaken to prevent misunderstandings and that the person becomes central in all decision-making processes. Originality/value: This paper is original in considering ADRTs as a safeguarding issue from two perspectives: that of the person making the ADRT and being confident in respect for the decisions made; and that of clinicians and other professionals being reflexively aware of the need to accept advance decisions and not acting according to unconscious biases in times of crisis. [ABSTRACT FROM AUTHOR]

While in Western European countries, the end-of-life decisions have become a matter of public policy, this paper provides a detailed analysis of end-of-life decisions in Albania by focusing on instructional medical directives. The manuscript investigates the Albanian legal system, the documents published by the National Ethics Committee and the National Committee of Health, as the two main advisory public bodies on health issues, as well as the national medical jurisprudence and the Code of Medical Ethics. After emphasizing the importance of instructional medical directives and considering the international literature that has underlined the ethical principle of patient autonomy, this paper provides some policy suggestions. In the conclusion, this contribution highlights the importance of ad hoc rules governing instructional medical directives as well as the ethical principles and international literature as an instrument to fill the gap in the national system. In addition, particular attention is given to the application of ethical principles in end-of-life decisions in the current pandemic situation. [ABSTRACT FROM AUTHOR]

Global policy places emphasis on the implementation and usage of advance care planning (ACP) to inform decision making at the end of life. For people with dementia, where its use is encouraged at the point of diagnosis, utilisation of ACP is relatively poor, particularly in parts of Europe. Using a constructivist grounded theory methodology, this study explores the ways in which co-residing couples considered ACP. Specifically, it seeks to understand the ways in which people with dementia and their long-term co-residing partners consider and plan, or do not plan, for future medical and social care. Sixteen participants were interviewed. They identified the importance of relationships in the process of planning alongside an absence of formal service support and as a result few engaged in ACP. The study recognises the fundamental challenges for couples in being obliged to consider end-of-life issues whilst making efforts to 'live well'. Importantly, the paper identifies features of the ACP experience of a relational and biographical nature. The paper challenges the relevance of current global policy and practice, concluding that what is evident is a process of 'emergent planning' through which couples build upon their knowledge of dementia, their networks and relationships, and a number of 'tipping points' leading them to ACP. The relational and collective nature of future planning is also emphasised. [ABSTRACT FROM AUTHOR]

Forty-five years ago, the first author of this paper surveyed the US medical schools to determine their offerings on EOL (End-of-Life) issues. The results showed limited exposure for medical school students to learn about dying and death, thus their "learning" was apparently on-the-job training. The EOL offerings were so limited that the American Association of Medical Colleges (AAMC), following the 1975 publication from the survey, contacted the first author to inquire about death and dying in the curricula of their medical schools. Apparently, it was so insignificant that the AAMC did not have such information. Palliative medicine, geriatric medicine, and hospice were then in the "birthing" process, a mere blur on the horizon. Today, as in 1975, it is likely that most medical students have personally had minimal experience with death and that for many entering students, other than on television, the cadaver is their first sight of a dead person. The objective of this research is a longitudinal study at five-year intervals since 1975 reporting on EOL education in US medical schools. The total number of medical schools has increased from 113 in 1975 to 150 in 2020. The current study surveyed medical schools electronically and via postal services with a response rate of 37%. Findings from the survey over time revealed significant inclusion of death and dying and palliative medicine as well as geriatrics and hospice. Gross anatomy has evolved from strictly hands-on to integrating 3D/virtual models, a change not without controversy. A noticeable difference in emphasis is obvious as care now plays a more significant role in medical training than previously, thus making modern medicine not only about cure, but more about care than was previously emphasized. Communication with dying patients and families, analgesics for chronic pain, and advance directives all are covered in over 90% of schools today. The current emphasis on EOL care, not just disease management, is increasing and puts more of a human face on modern medicine. [ABSTRACT FROM AUTHOR]

In response to a number of emerging issues, in 2017 the federal Maternal and Child Health Bureau funded its first collaborative quality improvement network aimed at improving the quality of life for children with medical complexity, the well-being of their families and the cost-effectiveness of their care. This paper is intended as a brief introduction to the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity or CMC CoIIN project. In it, you will learn about the origins of the project, the guiding principles used to cocreate and promote measurable, meaningful family engagement in systems-level change efforts, its goals and objectives, the impact of the coronavirus disease 2019 pandemic on the project and some high-level learnings from our experiences, which have implications for future care delivery improvements for this growing and vulnerable population of children. [ABSTRACT FROM AUTHOR]

Most international definitions of palliative care in the worlds of policy and practice emphasize the 'holistic' dimensions of end-of-life experience and its care. To discover whether the definitions of palliative care are reflected in the field's research priorities. A content analysis of two research journals, one British and the other American, is described to provide a simple indicative answer to this question. The abstracts of 609 research papers drawn from these two journals between the years 2021–22 were examined thematically. The categories of physical alone, physical, and psychological, and psychological alone, when combined accounted for 69% of all research reports. The broader social aspects of care, outside of communication and advance care planning, were largely unaddressed. The social domain accounted for 29%, but 78% of this figure was about advance care planning and communication. Likewise, the role of spirituality, present in most of the definitions, was under researched and under reported. Even within this context, the results were disappointing. Spiritual care accounted for only 2% of reports. Examination of research publications of two major palliative care research journals showed a significant overemphasis on symptom management and health service delivery assessments. This significant dearth of investigation in the major areas of social and spiritual domains is a call to action for researchers, grant making bodies, researchers, ethics committees, and journal editorial teams. [ABSTRACT FROM AUTHOR]

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

Discussions between health professionals and nursing home (NH) residents or their families about the current or future goals of health care may be associated with better outcomes at the end of life (EOL), such as avoidance of unwanted interventions or death in hospital. The timing of these discussions varies, and it is possible that their influence on EOL outcomes depends on their timing. This study synthesized current evidence concerning the timing of goals of care (GOC) discussions in NHs and its impact on EOL outcomes. Systematic review. Adult populations in NH settings. This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. We searched PubMed, Embase, and Cumulative Index of Nursing and Allied Health from January 2000 to September 2022. We included studies that examined timing of GOC discussions in NHs, were peer-reviewed, and published in English. Quality of the studies was assessed using the Newcastle-Ottawa Scale. Screening of 1930 abstracts yielded 149 papers that were evaluated for eligibility. Of the 18 articles, representing 16 distinct studies that met review criteria, 12 evaluated the timing of advance directives. There was variation in the timing of GOC discussions and compared with discussions that occurred within a month of death, earlier discussions (eg, at the time of facility admission) were associated with lower rates of hospitalization at the EOL and lower health care costs. The timing of GOC discussions in NHs varies and evidence suggests that late discussions are associated with poorer EOL outcomes. The benefits of goal-concordant care may be enhanced by earlier and more frequent discussions. Future studies should examine the optimal timing for GOC discussions in the NH population. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Since 2015 a whole-of-community program to promote advance care planning (ACP) within one Queensland Hospital and Health Service (HHS) catchment has spread statewide, financed by Queensland Health (QH) agencies and led by the Statewide Office of Advance Care Planning (SOACP). The program aims to identify ACP-eligible patients, invite and finalise ACP discussions, and ensure documented care preferences are easily retrievable by clinicians to guide future care if a person loses capacity. The SOACP established a digital infrastructure whereby quality-audited ACP documents are uploaded to a software platform accessible to all QH clinicians, private medical specialists, ambulance paramedics, general practitioners (GPs), and registered nurses, including those in residential aged care facilities (RACFs). The SOACP also hosts a website providing resources for clinicians and patients, delivers educational events and mentorship to GPs and hospital and RACF staff, and employs ACP facilitators working across all QH HHSs. The program has seen yearly increases in the numbers of ACP documents uploaded from around the state, with up to 79% of eligible patients in some hospitals receiving ACP, significant ACP uptake in RACFs, and acceptance by GPs to engage in ACP. Audits reveal high concordance between stated preferences and hospital care received, and ACP patients, compared to matched non-ACP controls, more frequently die out of hospital, have fewer inpatient days during their last 6 months of life, and receive less invasive care, with similar results seen among same-patient cohorts post-ACP. Barriers and enablers to ACP have been identified which will inform program evolution. What is known about the topic? Advance care planning (ACP) for end-of-life care benefits patients, their families and the healthcare system, but programs for enhancing ACP uptake and effects at a whole-of-community level are lacking. What does this paper add? We describe a statewide program for promoting ACP within hospitals, general practice and residential aged care. Key components were creating a central office of ACP, establishing digital infrastructure for making advance care plans accessible to a wide clinician audience, providing education in ACP, and training ACP facilitators. What are the implications for practitioners? Increasing ACP uptake requires a systematised approach to promoting ACP within all sectors of healthcare and the general public. [ABSTRACT FROM AUTHOR]

Background: In 2016, the Act on Decisions on Life‐Sustaining Treatment for Patients in Hospice and Palliative Care was implemented in Korea, providing a broad framework for end‐of‐life decision‐making for the first time and making advance directives legally recognized documents. This Act can correct long‐standing under‐recognition of patients as valid decision makers for their own treatment choices. However, limited recognition of patient self‐determination, rigid legal forms for documenting patient wishes, and the roles of family under the Act may pose challenges both to patients and nurses. Aim: This paper critiques whether this newly introduced system of advance directives can truly guarantee protection of the patient's interests and respect for patient autonomy in real life​, and discusses ethical and legal issues regarding the Act. Source of evidence: We reviewed the current system of advance directives by raising three questions: (1) Do advance directives reflect a competent person's voluntary and informed choice?, (2) Are advance directives applicable in diverse clinical situations?, and (3) Does the Korean advance directive system ensure that such directives are honored in reality? Conclusion: Although the Act is an important first step in respecting patient autonomy in end‐of‐life decision‐making, it remains inadequate as it fails to provide thorough guidance in terms of the quality of writing process, applicability, and the guaranteed effects of advance directives. Implications for nursing and health policy: As nurses are best situated for addressing these limitations due to their roles and competencies in clinical practice, expanding the roles of nurses in every stage of advance directive practice could help achieve the original purpose of advance directives. This calls for a policy that promotes an expanded role of nurses to improve the quality of advance directive practice. [ABSTRACT FROM AUTHOR]

This paper provides an overview of the evidence on the perspective of health care professionals (HCPs) in relation to advance care planning (ACP) for people with dementia, residing in long-term care settings. A narrative approach was adopted to provide a comprehensive synthesis of previously published literature in the area. A systematic literature search identified 14 papers for inclusion. Following review of the studies four themes were identified for discussion; Early integration and planning for palliative care in dementia; HCPs ethical and moral concerns regarding ACP; Communication challenges when interacting with the person with dementia and their families and HCPs need for education and training. Despite evidence, that HCPs recognise the potential benefits of ACP, they struggle with its implementation in this setting. Greater understanding of dementia and the concept of ACP is required to improve consistency in practice. Synthesising the existing evidence will allow for further understanding of the key issues, potentially resulting in improved implementation in practice. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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]

As patient autonomy expands, a highly controversial issue has emerged. Should the advance directives (ADs) of refusing life-saving treatments or requesting euthanasia of persons with dementia (PWDs) who express changed minds or are often in a happy state be fulfilled? There are two autonomy-related positions. The mainstream position in philosophical discussions supports the priority of ADs based on precedent autonomy. Buchanan and Brock, and Dworkin represent this view. The other position supports the priority of PWDs' current wishes based on minimal autonomy represented by Jaworska. By rethinking the theoretical and practical challenges of the two positions and their arguments respectively, the paper concludes that in such a scenario, the priority of ADs is morally indefensible, and it is also challenging to establish minimal autonomy defend the moral priority of PWDs' current wishes. For PWDs whose past values, beliefs, and preferences fade away but who retain apparent intrinsic sentience of well-being, a modified defined quality-of-life (QoL) approach serves as another reasonable basis in their medical decision-making, and the ADs and the QoL should be further merged to reduce the uncertainty of the grey zone. [ABSTRACT FROM AUTHOR]