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

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

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

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

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

This is a response to the article by Merel et al. [ABSTRACT FROM AUTHOR]

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

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

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]

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

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

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]

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

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

Background: Advance care planning (ACP) provides opportunities for people to make decisions about future care. Internationally, the approach to this varies. Older people living with frailty could considerably benefit from discussing and undertaking advance care planning. However, this has not traditionally been a particular focus of their care. Aim: To provide recommendations to support nurses and health professionals to undertake ACP conversations with older people living with frailty through a review of contemporary literature. Methods: The following electronic databases were searched: CINAHL, British Nursing Index and the Cochrane Library. Information about the process and outcome of undertaking an ACP conversation with older people living with frailty was extracted and categorised in relation to care setting. Findings: A total of 69 papers were identified, of which eight met the inclusion criteria. The importance of preparation before starting an ACP conversation was highlighted, as well as key considerations when undertaking such a conversation. From these papers five clinical recommendations, one policy recommendation and two research recommendations are made. Conclusions: Maintaining and improving wellness is important to older people living with frailty. In order that conversations about ACP are acceptable and meaningful to older people living with frailty, they should include: the opportunity to discuss both 'current' and 'future' care; be focused on their goals of care; and, to be offered routinely to the older person [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]

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]

The integration of the child or young person (CYP) in conversations around advance care planning (ACP) is an important area of paediatric practice. These discussions provide CYP with the opportunity to voice their values, goals and preferences, enabling health‐care professionals to ensure they are aligned with their planned course of treatment. This process, often undertaken within the context of the child's family, empowers children to participate in decisions and experience the dignity of self‐determination. It also facilitates an increased understanding between the CYP and those involved in their care. The objectives of this paper are to highlight the importance of these conversations for paediatricians and identify barriers, both real and perceived, that may prevent them from engaging with a CYP about their preferences for future care including focusing more on discussion with the parents, and concern about or not having the skills to engage the child in such sensitive conversations. Triggers that can prompt clinicians to undertake ACP are also discussed. A further complexity is that after seeking their perspective, it may become apparent that the CYP may hold different views and perspectives to their parents and/or clinician. This review article will especially examine elements of end‐of‐life conversations that are critical to support the important goal of listening to the voice of the CYP. This includes considerations around timing, legal aspects, ethical tensions that arise when amplifying a child's voice, clinician/team‐member roles, clinical process considerations, and the use of specific interventions and ACP tools to facilitate these conversations with CYP. [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]

Objective: The purpose of this paper is to provide a review of the existing literature on racial disparities in quality of palliative and end-of-life care and to demonstrate gaps in the exploration of underlying mechanisms that produce these disparities.Background: Countless studies over several decades have revealed that our healthcare system in the United States consistently produces poorer quality end-of-life care for Black compared with White patients. Effective interventions to reduce these disparities are sparse and hindered by a limited understanding of the root causes of these disparities.Methods: We searched PubMed, CINAHL and PsychInfo for research manuscripts that tested hypotheses about causal mechanisms for disparities in end-of-life care for Black patients. These studies were categorized by domains outlined in the National Institute of Minority Health and Health Disparities (NIMHD) framework, which are biological, behavioral, physical/built environment, sociocultural and health care systems domains. Within these domains, studies were further categorized as focusing on the individual, interpersonal, community or societal level of influence.Results: The majority of the studies focused on the Healthcare System and Sociocultural domains. Within the Health Care System domain, studies were evenly distributed among the individual, interpersonal, and community level of influence, but less attention was paid to the societal level of influence. In the Sociocultural domain, most studies focused on the individual level of influence. Those focusing on the individual level of influence tended to be of poorer quality.Conclusions: The sociocultural environment, physical/built environment, behavioral and biological domains remain understudied areas of potential causal mechanisms for racial disparities in end-of-life care. In the Healthcare System domain, social influences including healthcare policy and law are understudied. In the sociocultural domain, the majority of the studies still focused on the individual level of influence, missing key areas of research in interpersonal discrimination and local and societal structural discrimination. Studies that focus on individual factors should be better screened to ensure that they are of high quality and avoid stigmatizing Black communities. [ABSTRACT FROM AUTHOR]

Many patients have three primary goals for how treatment decisions are made for them in the event of decisional incapacity. They want to be treated consistent with their preferences and values, they want their family to be involved in making decisions, and they want to minimize the stress on their family. The present paper investigates how patients' beliefs about surrogate decision-making influence which of these three goals they prioritize. Methods: Quantitative survey of 1,169 U.S. patients to assess their beliefs about surrogate decision-making, and how these beliefs influence patients' priorities for surrogate decision-making. Results: Most patients believed that families in general (68.8%) and their own family in particular (83.4%) frequently, almost always, or always know which treatments the patient would want in the event of incapacity. Patients with these beliefs were more likely to prioritize the goal of involving their family in treatment decision-making over the goal of minimizing family stress. Most patients (77.4%) also believed their family would experience significant stress from helping to make treatment decisions. However, patients' priorities were largely unchanged by this belief. Conclusions: Prior reports suggest that patients overestimate the extent to which their family knows which treatments they want in the event of decisional incapacity. The present analysis adds that these patients might be more likely to prioritize the goal of involving their family in treatment decision-making, even when this results in the family experiencing significant distress. This finding highlights that patients' misinformed beliefs about their family's knowledge might influence patients' priorities for surrogate decision-making, raising important questions for clinical practice, policy, and future research. Supplemental data for this article is available online at [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]

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]

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]

People with impaired decision-making capacity enjoy the same rights to access technology as people with full capacity. Our paper looks at realising this right in the specific contexts of artificial intelligence (AI) and mental capacity legislation. Ireland's Assisted Decision-Making (Capacity) Act, 2015 commenced in April 2023 and refers to 'assistive technology' within its 'communication' criterion for capacity. We explore the potential benefits and risks of AI in assisting communication under this legislation and seek to identify principles or lessons which might be applicable in other jurisdictions. We focus especially on Ireland's provisions for advance healthcare directives because previous research demonstrates that common barriers to advance care planning include (i) lack of knowledge and skills, (ii) fear of starting conversations about advance care planning, and (iii) lack of time. We hypothesise that these barriers might be overcome, at least in part, by using generative AI which is already freely available worldwide. Bodies such as the United Nations have produced guidance about ethical use of AI and these guide our analysis. One of the ethical risks in the current context is that AI would reach beyond communication and start to influence the content of decisions, especially among people with impaired decision-making capacity. For example, when we asked one AI model to 'Make me an advance healthcare directive', its initial response did not explicitly suggest content for the directive, but it did suggest topics that might be included, which could be seen as setting an agenda. One possibility for circumventing this and other shortcomings, such as concerns around accuracy of information, is to look to foundational models of AI. With their capabilities to be trained and fine-tuned to downstream tasks, purpose-designed AI models could be adapted to provide education about capacity legislation, facilitate patient and staff interaction, and allow interactive updates by healthcare professionals. These measures could optimise the benefits of AI and minimise risks. Similar efforts have been made to use AI more responsibly in healthcare by training large language models to answer healthcare questions more safely and accurately. We highlight the need for open discussion about optimising the potential of AI while minimising risks in this population. [ABSTRACT FROM AUTHOR]

Death from stage 5 chronic kidney disease (CKD 5) in childhood or adolescence is rare, but something that all paediatric renal physicians and most paediatricians will encounter. In this paper, we present the literature on three key areas of palliative care practice essential to good clinical management: shared decision-making, advance care planning, and symptom management, with particular reference to CKD 5 where kidney transplant is not an option and where a decision has been made to withdraw or withhold dialysis. Some areas of care, particularly with regard to symptom management, have not been well-studied in children and young people (CYP) with CKD 5 and recommendations with regard to drug choice and dose modification are based on adult literature, known pharmacokinetics, and clinical experience. [ABSTRACT FROM AUTHOR]

As the importance of Advance Care Planning (ACP) has become well-known and accepted, health systems have begun placing more emphasis on ACP. However, many health systems still have not standardized this process, and most health systems still approach ACP in a reactive—rather than proactive—manner. This paper discusses one system's innovative approach to ACP that standardizes ACP in the inpatient and outpatient settings, while focusing on a proactive rather than reactive orientation to ACP. [ABSTRACT FROM AUTHOR]

Little is known about the experiences of people living alone with dementia in the community and their non-resident relatives and friends who support them. In this paper, we explore their respective attitudes and approaches to the future, particularly regarding the future care and living arrangements of those living with dementia. The study is based on a qualitative secondary analysis of interviews with 24 people living alone with early-stage dementia in North Wales, United Kingdom, and one of their relatives or friends who supported them. All but four of the dyads were interviewed twice over 12 months (a total of 88 interviews). In the analysis, it was observed that several people with dementia expressed the desire to continue living at home for 'as long as possible'. A framework approach was used to investigate this theme in more depth, drawing on concepts from the existing studies of people living with dementia and across disciplines. Similarities and differences in the future outlook and temporal orientation of the participants were identified. The results support previous research suggesting that the future outlook of people living with early-stage dementia can be interpreted in part as a response to their situation and a way of coping with the threats that it is perceived to present, and not just an impaired view of time. Priorities for future research are highlighted in the discussion. [ABSTRACT FROM AUTHOR]

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

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. [ABSTRACT FROM AUTHOR]

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: 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]

Advances in the medical treatment of cancer have increased the number of survivors, particularly among older adults, who now represent the majority of these. Survivorship care plans (SCPs) are documents that cancer patients receive summarising their care, usually at the end of treatment but preferably from initial diagnosis. These may increase patient satisfaction and represent an opportunity to initiate preventative strategies and address future care needs. Advance care planning (ACP), incorporating advance healthcare decision-making, including formal written directives, increases satisfaction and end-of-life care. This paper systematically reviews evaluations of ACP within SCPs among older (≥65 years) cancer survivors. No studies meeting the inclusion criteria were identified by search strategies conducted in PubMed/MEDLINE and the Cochrane databases. One paper examined cancer survivors' mainly positive views of ACP. Another discussed the use of a SCP supported by a 'distress inventory' that included an advance care directive (living will) as an issue, though no formal evaluation was reported. Although ACP is important for older adults, no study was found that evaluated its role within survivorship care planning. Despite the risk of recurrence and the potential for morbidity and mortality, especially among older cancer survivors, ACP is not yet a feature of SCPs. [ABSTRACT FROM AUTHOR]

Background: Palliative care has been identified as an area of low outpatient referral from our emergency department, yet palliative care has been shown to improve the quality of patient's lives. Aim: This study investigates both provider and patient perspectives on palliative care for the purpose of identifying barriers to increased palliative care utilization within our healthcare system. Design: Two surveys were developed, one for patients/caregivers and one for healthcare providers. Setting/participants: This was a single-center study completed at a quaternary academic emergency department. A survey was sent to emergency medicine providers with 47% response rate. Research staff approached Emergency Department patients who had been identified to be high risk to fill out paper surveys with 76% response rate. Results: Only 28% of patients had already undergone palliative care, with an additional 25% interested in palliative care. Nearly half of the patients felt that they needed more resources to prevent hospital visits. Patients identified low understanding of palliative care and difficulty accessing appointments as barriers to consultation. Among providers, 98% indicated that they had patients who would benefit from palliative care. A majority of providers highlighted patient understanding of palliative care and access to appointments as barriers to palliative care. Notably, 52% of providers reported that emergency medicine provider knowledge was a barrier to palliative care consultation. Conclusions: Despite emergency department patients' self-identified need for resources and emergency medicine providers' recognition of patients who would benefit from palliative care, few patients receive palliative care consultation. [ABSTRACT FROM AUTHOR]

This paper provides an evaluation of the Heart of Living and Dying (HLD) Initiative. This initiative is a group process that attempts to bring Advance Care Planning (ACP) into the public domain. It encourages participants to consider what matters to them in their living along with their hopes, preferences, and wishes for their final years and end-of-life care. An inductive, interpretive, and naturalistic approach allowed the researcher to study these phenomena in their natural setting i.e., the community. This qualitative study used 5 focus groups with 17 people and employed thematic data analysis to identify key themes. All participants in the HLD speak from a personal perspective irrespective of any professional background. It transpired that 16 respondents worked in health and social care, which subsequently became noteworthy in the findings. Three key themes were identified: (a) feeling emotionally safe enough to have such sensitive conversations is vital; (b) participating in the HLD process increases the confidence of those participants who worked in health and social care, to undertake ACP conversations and (c) planning ahead is a complex, staged process rather than a single record-making event. The Covid-19 pandemic crisis reinforced the need to upstream ACP initiatives such as the HLD, as the norm for everyone, since all of us will one day die. It is recommended that the HLD be incorporated within ACP training given that the experiential nature of it and the use of groups was reported to build confidence in facilitating ACP conversations. A virtual HLD process needs to be developed to adapt to restrictions on gatherings due to Covid 19. [ABSTRACT FROM AUTHOR]

The novel Coronavirus disease 2019 (COVID‐19) outbreak has led to rapid and profound changes in healthcare system delivery and society more broadly. Older adults, and those living with chronic or life‐limiting conditions, are at increased risk of experiencing severe or critical symptoms associated with COVID‐19 infection and are more likely to die. They may also experience non‐COVID‐19 related deterioration in their health status during this period. Advance care planning (ACP) is critical for this cohort, yet there is no coordinated strategy for increasing the low rates of ACP uptake in these groups, or more broadly. This paper outlines a number of key reasons why ACP is an urgent priority, and should form a part of the health system's COVID‐19 response strategy. These include reducing the need for rationing, planning for surges in healthcare demand, respecting human rights, enabling proactive care coordination and leveraging societal change. We conclude with key recommendations for policy and practice in the system‐wide implementation of ACP, to enable a more ethical, coordinated and person‐centred response in the COVID‐19 context. [ABSTRACT FROM AUTHOR]

Aims and objectives: To describe advance care planning (ACP) for patients with cancer in palliative care from professionals' perspective. Background: The number of patients with cancer is increasing. Palliative care should be based on timely ACP so that patients receive the care they prefer. Design: A scoping review. Methods: A systematic literature search was conducted in January 2019. The Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) checklist was used. The methodological quality of the studies was evaluated using the Joanna Briggs Institute (JBI) Critical Appraisal tools. Data were analysed with content analysis. Results: Of 739 studies identified, 12 were eligible for inclusion. The settings were inpatient and outpatient facilities in special and primary care including oncology, palliative and hospice care. ACP consisted of patient‐oriented issues, current and future treatment, and end‐of‐life matters. The participants were nursing, medical or social professionals. ACP conversations rarely occurred; if they did, they took place at the onset, throughout and late in the cancer. Conclusions: Professionals could not separate day‐to‐day care planning and ACP. ACP documentation was scattered and difficult to find and use. Professionals were unfamiliar with ACP, and established practices were lacking. ACP conversations mostly occurred in late cancer. Further research clarifying concepts and exploring the significance of ACP for patients and relatives is recommended. Relevance to clinical practice: Our results support the use of ACP by a multidisciplinary team from the early stages of cancer as a discussion forum around patients' wishes and choices. We showed the need to raise professionals' awareness of ACP. Education and appropriate data tools for ACP are important as they may reduce reluctance and promote ACP use. This paper contributes to the wider global clinical community by pointing out the importance of standardising ACP contents and practices. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Lesbian, gay, and bisexual older adults are more likely than their heterosexual peers to experience health disparities, discrimination from healthcare providers based on sexual orientation, and rejection from their family of origin, all of which can complicate medical care and decision making, as well as end-of-life arrangements. Yet, relatively few studies of lesbian, gay, and bisexual seniors have looked at motivations for advance care and end-of-life planning, which are strategies that can help ensure that healthcare treatment and end-of-life wishes are enacted as desired. The present qualitative study investigated this topic with a purposive sample of nine lesbian, gay, and bisexual and same-gender-loving adults in a metropolitan region of the Southeastern United States. The study involved in-depth face-to-face interviews, followed by a brief pen-and-paper survey. Participants' ages ranged from 65 to 77; the sample included five men and four women. Six individuals were white/Caucasian, while three were African American/Black. We identified three themes related to motivations for advance care and end-of-life planning: wanting a sense of agency, learning from others, and reducing conflict and confusion for loved ones. We discuss the importance of these findings for social work practice with lesbian, gay, and bisexual older adults and for social work education, as well as implications for future research. [ABSTRACT FROM AUTHOR]

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]

In the palliative phase of a person's illness, the needs of the patient and informal caregivers are paramount. Caregivers often look to palliative care practitioners for support, guidance and emotional comfort. This article reviews the role of the informal caregiver at the end of life, summarising their concerns and needs. The paper also highlights caregiver difficulties in making the coping transition when the patient's medical condition becomes advanced and they require end-of-life care. The focus of the review is placed on discussions about Advanced Care Planning (ACP). ACP is a complex legal, ethical and practical issue that can enable caregivers to consider future strategies and enable them to provide high quality care at the end of life. The paper looks at some of the ethical and legal issues associated with this sensitive end-of-life issue. [ABSTRACT FROM AUTHOR]

As our population ages, providing person-centered, family-focused, culturally congruent, quality care becomes ever more important. Advance care planning (ACP) conversations seek to elicit a person's values, beliefs and preferences and to identify who might be a surrogate decision-maker for a person if they are unable or unwilling to speak for themselves. These nuanced conversations provide the foundation for the delivery of personalized goal-concordant care. Yet, despite the many benefits associated with ACP, it remains underutilized. Clinical social workers are well positioned to take a leadership role in ACP. This paper highlights a range of ACP roles and resources for clinical social workers within healthcare and in the community. [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]

A diagnosis of dementia can have a significant effect, not only on the person diagnosed, but also on the person's family. Drivers within national policy and strategy to raise awareness and promote education have improved the understanding of dementia across professional groups, as well as within the wider population. However, families living with dementia still struggle to find information and support. This paper explores the common issues faced by families, and focuses on a relationship approach to care. The role of the community nurse can be central to supporting people with dementia and their families to live well in their own communities. The paper uses a casestudy approach to discuss three scenarios commonly raised by family carers and people with dementia: (1) seeking help and support at point of seeking diagnosis, (2) knowing the 'right time' to seek help and advice, and (3) when symptomatic changes affect wellbeing and relationships. [ABSTRACT FROM AUTHOR]

This paper will highlight some of the pertinent issues associated with palliative and end-of-life decision-making in relation to dementia. To achieve this, the author will consider why there is disparity in relation to shared decision-making practices across non-malignant disease through exploration of models of disease trajectories. The author will then go on to highlight how people living with dementia, a non-malignant disease, have a human right to receive palliative care and be an active agent in the shared decision-making process about their future and care preferences. The challenges of shared decision-making in dementia care will be discussed along with some implications for nursing practice. The aim of this paper is to provide nurses, practising across all settings, with an overview of the fundamental importance of timely palliative and end-of-life shared decision-making in dementia care. [ABSTRACT FROM AUTHOR]