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This paper builds on a previous article describing an innovative approach to enhance the service user and practitioner's experience of novel collaborative approach to service improvement. It aims to explore the impact of this through the voices of service users as collaborators and co-authors. The Recovery and Collaborative Care Planning Café (RCCPC) designed with World Café principles, created a safe space to foster inquiry and learning about recovery between service users, carers, and practitioners in an NHS Trust. An important part of the method was in changing conversations towards recovery and living well with conditions applying CHIME concepts (Connectedness, Hope, Identity, Meaning, and Empowerment). Story is a qualitative method known as a well-established effective means of engaging others in sharing experiences and perspectives. Through the stories of service users' experiences participating in the RCCP Cafe, it was clear that they felt that CHIME concepts had a positive impact on the way that their conversations evolved. Accounts of how these conversations had resulted in personal growth and increased connectedness emerged. [ABSTRACT FROM AUTHOR]

Introduction An electronic resuscitation system, implemented in 2015, within electronic patient records (EPR) at King's College Hospital NHS Foundation Trust was studied, aiming to review and improve decision documentation and communication. Method The study (January 2018 -- June 2018) included all gerontology inpatients with electronic do not attempt cardiopulmonary resuscitation (e-DNACPR) decisions. Cases were identified weekly, followed by retrospective analysis of discharges. Amendments to the electronic system and improvements were implemented between cycles. Cycle 1 One-hundred and thirty-three patients were included; 85% had an e-DNACPR form; 86% of all forms had senior doctor involvement; 68% evidenced patient/relative discussion; 13% documented multidisciplinary team (MDT) discussion. Interventions A mandatory 'named nurse' field was added to the form and trust-wide education programme implemented. Cycle 2 One-hundred and twenty-six patients were included; 100% had an e-DNACPR form; 93% evidenced senior doctor involvement; 71% evidenced patient/relative discussion; 57% documented MDT discussion. Conclusion Changes to the process and trust-wide education resulted in more robust documentation and communication. [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]

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

Context: Previous reviews of care planning (CP) interventions in care homes focus on higher quality research methodologies and exclusively consider advanced care planning (ACP), thereby excluding many intervention-based studies that could inform current practice. CP is concerned with residents' current circumstances while ACP focuses on expressing preferences which relate to future care decisions. Objectives: To identify, map and summarise studies reporting CP interventions for older people in care homes. Methods: Seven electronic databases were searched from 1 January 2012 until 1 January 2022. Studies of CP interventions, targeted at older people (>60 years), whose primary place of residence was a care home, were eligible for inclusion. Two reviewers independently screened the titles and abstracts of 3778 articles. Following a full-text review of 404 articles, data from 112 eligible articles were extracted using a predefined data extraction form. Findings: Studies were conducted in 25 countries and the majority of studies took place in the United States, Australia and the UK. Most interventions occurred within nursing homes (61%, 68/112). More than 90% of interventions (93%, 104/112) targeted staff, and training was the most common focus (80%, 83/104), although only one included training for ancillary staff (such as cleaners and caterers). Only a third of the studies (35%, 39/112) involved family and friends, and 62% (69/112) described interventions to improve CP practices through multiple means. Limitations: Only papers written in English were included, so potentially relevant studies may have been omitted. Implications: Two groups of people - ancillary workers and family and friends - who could play a valuable role in CP were often not included in CP interventions. These oversights should be addressed in future research. [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]

Up to 26% of individuals residing in care homes are impacted by cancer. This underscores the importance of understanding the holistic needs of care home residents living with cancer to enhance the quality of their care. The primary objective of this integrative literature review was to consolidate the available evidence concerning the comprehensive needs of people living with cancer in care home settings, providing valuable insights into addressing their diverse needs. An integrative literature review was conducted using a systematic approach. Extensive searches were conducted in three databases, complemented by a thorough examination of grey literature and reference lists of relevant papers. The review focused on literature published between 2012 and 2022. The screening process involved two independent reviewers, with a third reviewer resolving any discrepancies. The review identified twenty research papers that met the eligibility criteria. These papers shed light on three primary themes related to the holistic needs of care home residents with cancer: physical, psychological, and end-of-life needs. Physical needs encompassed pain management, symptom control, and nutrition, while psychological needs involved social support, emotional well-being, and mental health care. End-of-life needs addressed end-of-life care and advance care planning. These themes highlight the multifaceted nature of cancer care in care homes and underscore the importance of addressing residents' holistic needs in a comprehensive and integrated manner. Improving care home education about cancer and integrating palliative and hospice services within this setting are vital for addressing the diverse needs of residents with cancer. [ABSTRACT FROM AUTHOR]

Objectives: New routes for supply of eye tissue are needed in the UK to support transplant surgery and medical research. Hospice care (HC) and Hospital-based Palliative care (HPC) services represent potential supply routes. This paper reports findings from the survey arm of the Eye Donation from Palliative and Hospice Care–Investigating potential, practice preference and perceptions study (EDiPPPP), objectives of which were to: i) Investigate existing practice in relation to eye donation across HC and HPC settings; ii) identify perceptions of HCPs toward embedding eye donation into routine end of life care planning; iii) investigate the informational, training, or support needs of clinicians regarding eye donation. Design: Online survey of UK-based HC and HPC clinicians, distributed through professional organisations (Association of Palliative Medicine (UK); Hospice UK). Participants: One hundred fifty-six participants completed (63% HC; 37% HPC—8% response rate, of n = 1894 approached). Results: Majority of participants (63%, n = 99) supported raising eye donation (ED) with patients and families and agreed that ED should be discussed routinely with eligible patients. However, 72%, (n = 95) indicated that staff within their clinical setting did not routinely discuss the option of ED in end-of-life care planning conversations with the majority of participants reporting that the option of ED was not 'routinely discussed in multi-disciplinary team or other meetings. Conclusions: Despite significant support, ED is not part of routine practice. Attention to barriers to embedding ED and reducing knowledge deficits are urgently needed to increase the supply of eye tissue for use in transplant operations. [ABSTRACT FROM AUTHOR]

People with dementia and their care partners report a lack of support, treatment, and information, fragmented services, and a lack of inclusion in decisions about their care. Care planning may address these issues; however, there is scarce literature on the process or benefits of care planning for people with dementia. This review describes the literature on care planning for community-dwelling people with dementia and their care partners. A systematic scoping methodology was followed to identify the research questions, identify relevant documents, select relevant documents, chart the data, and collate, summarise, and report the results. 31 full-text documents published between 2010 and May 2020 were identified and reviewed. Seven were guidelines, seven were expert opinion pieces, 11 were intervention studies, and six were descriptive studies. The topics and process of care planning varied depending on the service context (e.g., memory clinic, home care, and primary care). Care planning was presented as a component of case management in 15 papers. Six of the 11 intervention studies reported positive outcomes, one showed no improvement, and one did not evaluate outcomes for people with dementia or their care partners. Of the six with positive outcomes, four evaluated care planning in the context of care management. There is limited evidence that care planning alone improves outcomes for people with dementia and their care partners. It is unclear whether it may have benefits when combined with care management. [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: Mental capacity is a fundamental aspect that enables patients to fully participate in various healthcare procedures. To assist healthcare professionals (HCPs) in assessing patients' capacity, especially in the mental health field, several standardized tools have been developed. These tools include the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), the MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR), and the Competence Assessment Tool for Psychiatric Advance Directives (CAT-PAD). The core dimensions explored by these tools include Understanding, Appreciation, Reasoning, and Expression of a choice. Objective: This meta-analysis aimed to investigate potential differences in decision-making capacity within the healthcare context among groups of patients with bipolar disorders (BD) and schizophrenia spectrum disorders (SSD). Methods: A systematic search was conducted on Medline/Pubmed, and Scopus. Additionally, Google Scholar was manually inspected, and a manual search of emerging reviews and reference lists of the retrieved papers was performed. Eligible studies were specifically cross-sectional, utilizing standardized assessment tools, and involving patients diagnosed with BD and SSD. Data from the studies were independently extracted and pooled using random-effect models. Hedges' g was used as a measure for outcomes. Results: Six studies were identified, with three studies using the MacCAT-CR, two studies the MacCAT-T, and one the CAT-PAD. The participants included 189 individuals with BD and 324 individuals with SSD. The meta-analysis revealed that patients with BD performed slightly better compared to patients with SSD, with the difference being statistically significant in the domain of Appreciation (ES = 0.23, 95% CI: 0.01 to 0.04, p = 0.037). There was no statistically significant difference between the two groups for Understanding (ES = 0.09, 95% CI:−0.10 to 0.27, p = 0.352), Reasoning (ES = 0.18, 95% CI: −0.12 to 0.47, p = 0.074), and Expression of a choice (ES = 0.23, 95% CI: −0.01 to 0.48, p = 0.60). In the sensitivity analysis, furthermore, when considering only studies involving patients in symptomatic remission, the difference for Appreciation also resulted in non-significant (ES = 0.21, 95% CI: −0.04 to 0.46, p = 0.102). Conclusions: These findings indicate that there are no significant differences between patients with BD and SSD during remission phases, while differences are minimal during acute phases. The usefulness of standardized assessment of capacity at any stage of the illness should be considered, both for diagnostic-therapeutic phases and for research and advance directives. Further studies are necessary to understand the reasons for the overlap in capacity between the two diagnostic categories compared in this study. [ABSTRACT FROM AUTHOR]

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

Background: Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care. Methods: A multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values. Results: We included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values. Conclusion: Even though available evidence on symptom-related paediatric palliative care interventions has increased, there still is a paucity of evidence in paediatric palliative care. We urge for international multidisciplinary multi-institutional collaboration to perform high-quality research and contribute to the optimization of symptom relief in palliative care for all children worldwide. [ABSTRACT FROM AUTHOR]

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Medical Assistance in Dying (MAID) legislation has evolved rapidly in Canada with significant impacts on nursing practice. The purpose of this paper is to describe evolving complexities in legislative context and practice standards that influence the experiences nurse practitioners and registered nurses have with MAID. Qualitative interviews were conducted with 25 registered nurses and 10 nurse practitioners from diverse contexts across Canada. Participants described their practices and considerations when discussing MAID as part of advance care planning; their use of, and challenges with, waivers of consent; their practice considerations in negotiating the complexities of clients for whom death is not reasonably foreseeable; and their moral wrestling with the inclusion of MAID for persons whose sole underlying medical condition is mental illness. Findings illustrate the moral complexities inherent in the evolving legislation and the importance of robust health and social care systems to the legal and ethical implementation of MAID in Canada. [ABSTRACT FROM AUTHOR]

Advance directives (ADs) have for some time been championed by ethicists and patient associations alike as a tool that people newly diagnosed with dementia, or prior to onset, may use to ensure that their future care and treatment are organized in accordance with their interests. The idea is that autonomous people, not yet neurologically affected by dementia, can design directives for their future care that caregivers are morally obligated to respect because they have been designed by autonomous individuals. In this paper, we first criticize the idea that ADs can retain moral authority in severe dementia by arguing that it is paradoxical. Second, we consider two arguments that initially seem to refute this critique of ADs, but we eventually dismiss them. The first argument states that ADs retain moral authority in severe dementia because autonomously formed interests, for example, ADs, can only be appropriately discarded by autonomous persons. This we term the historical autonomy argument. We dismiss it by demonstrating how we, in analog cases, are not obligated to continue to respect autonomously formed interests even though they have been discarded under nonappropriate conditions. The second argument is that ADs can be justified by what we term external interests. While we agree that people with severe dementia plausible can be said to have external interests, we show that ADs cannot express such interests and hence cannot be justified by them. We conclude that none of the discussed arguments support the use of ADs and because of this, the idea of ADs should be reassigned. [ABSTRACT FROM AUTHOR]

Background: Palliative care is identified internationally as a priority for efficacious dementia care. Research into "effective models" of palliative care for people with dementia has been recommended by several European countries. To build an effective service-delivery model we must gain an understanding of existing models used in similar settings. The study aim is to identify core components of extant models of palliative care for people with dementia, and their families, who are living at home in the community. Methods: A scoping review was employed. The search strategy was devised to identify all peer-reviewed research papers relating to the above aim. This process was iterative, and the search strategy was refined as evidence emerged and was reviewed. All types of study designs and both quantitative and qualitative studies of non-pharmacological interventions were considered for inclusion. Results: The search identified 2,754 unique citations, of which 18 papers were deemed eligible for inclusion. Although a palliative care approach is recommended from early in the disease process, most evidence involves end-of-life care or advanced dementia and pertains to residential care. The majority of the research reviewed focused on the effects of advance care planning, and end-of-life care; specialist palliative care input, and/or generalist palliative care provided by dementia services to enable people to remain at home and to reduce costs of care. Community staff training in palliative care appeared to improve engagement with Specialist Palliative Care teams. Integration of dementia and palliative care services was found to improve care received for people with dementia and their carers. Conclusions: While the evidence for integration of dementia and palliative care services is promising, further high-quality research is necessary particularly to identify the key components of palliative care for people living with dementia. This is imperative to enable people with dementia to inform their own care, to stay living at home for as long as possible, and, where appropriate, to die at home. [ABSTRACT FROM AUTHOR]

The Chapter 5 of the Mental Healthcare Act, 2017, referred henceforth as "the Act," lays down the "rights of person with mental illness" and it forms the core depth of this legislation. The Act makes provision for the care, treatment, and rehabilitation measures to reduce its recurrence. One of the main objectives of the Act is to make inclusion and rehabilitation of mentally ill persons into the society and help in eliminating the stigma attached to mental illness in India. The significance of the new Act is seen as soon as one turns to the facts, an estimated that 20% of Indians are likely to suffer from depression and 14% of Indians have mental disorders as per a WHO report. The Act covers everything from common to severe mental disorders and from mental hospitals to primary health-care centers. The Act decriminalizes the attempt of suicide having the presumption that the person who attempted suicide has undergone severe stress, and the Act mandates helping the person rather than punishing them. The Act provides the right of having access to treatment at affordable cost, and of good quality. The government must provide for a range of services including outpatient as well as inpatient services, medicines free of cost, specialized services of children and adolescents, etc. Another key feature is the implementation of medical insurance for treating those with mental illness at parity with physical illness by all insurers. However, the Act also has some shortcomings such as there is the breach of the fundamental right – "right to privacy" as the Act provides power to the nominated representative to unlimited access to the records of the persons with mental illness. Then, there is the question of the feasibility of implementation of the Act, which is the scarcity of resources, under the budget allocated to the National Mental Health Programme was just rupees 40 crores in FY18. This means that the budget allocated in India for mental health makes up only 0.06% of the total health-care budget. Further, there are only 3800+ registered psychiatrists in India when the need is for at least 13,500 psychiatrists, this explains the 80%–90% treatment gap that exists in India. Under the Act, individual persons living without family members or caregivers would struggle to get appropriate care in a Mental Health Establishment if their capacity is limited, by a mental disorder, even if it is limited for a short while if the medical practitioner tries to treat a person without valid consent, this might make them vulnerable to be charged for negligence and/or be prosecuted for assault or battery. Furthermore, the Act is silent on matters such as management of properties of persons with severe mental illness, rehabilitation, and integration of homeless mentally ill into the community. The Act further provides the police with the power to enter a person's private residence (without a magistrate's approval) if they have reason to believe that an individual is mentally ill. The Act does not mention the use of ambulance to transport such patients. This research paper will discuss all these points and more in detail, analyzing what the current Act offers and where it lacks or falls short of benefitting the ones it is meant to help, care, protect, and rehabilitate. [ABSTRACT FROM AUTHOR]

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

Childhood cancer is an urgent priority in Egypt, owing to a large number of children with cancer, the great need and demand for paediatric oncology services, limited resources/ funds and inferior survival outcomes. Therefore, an overview of the status of childhood cancer care in Egypt and an evidence-based approach towards optimal utilisation of resources/funds to improve this care are needed. This paper summarises key evidence about childhood cancer care and outcomes in Egypt. We conducted a narrative literature review using a structured search strategy of the MEDLINE database through the PubMed interface. All relevant evidence was summarised under five main sub-topics: (1) burden of childhood cancer in Egypt; (2) treatment approaches; (3) health outcomes; (4) costs and cost-effectiveness of treatment; and (5) barriers and facilitators to optimal childhood cancer care. We found high estimates of disease burden of childhood cancer in Egypt. Furthermore, childhood cancer treatment in Egypt is based on either implementing intensity- regulated protocols or adopting international protocols with or without adaptations to local contexts, leading to varying standards of care among the different treating centres. Limited data about the survival outcomes, costs and cost-effectiveness of treatment exist, although high-quality data from retrospective cohort studies were published from a large paediatric oncology centre (Children's Cancer Hospital Egypt--57357). As Egypt joins the WHO Global Initiative for Childhood Cancers as a focus country, it is prepared to move towards streamlining national efforts to implement a national childhood cancer plan to advance care, improve health outcomes and optimise resource use. Through these efforts, Egypt could become a beacon of hope and a role model to other low- and middle-income countries seeking to improve their childhood cancer care. [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]

An editorial is presented on presentations offered at the International Association of Bioethics' (IAB) 15th World Congress of Bioethics (WCB) hosted by the University of Pennsylvania in June 2020. Topics include expanding beyond clinical and medical ethics to encompassing public health ethics and matters of social justice; and committed to the defense of women's human rights and the eradication of violence in all interpersonal relationships.

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]

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]

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

Background: Advance Care Planning (ACP) 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: 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]

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]

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]

In this paper, I answer the following question: suppose that two individuals, C and D, have been in a long‐term committed relationship, and D now has dementia, while C is competent; if D agrees to have sex with C, is it permissible for C to have sex with D? Ultimately, I defend the view that, under certain conditions, D can give valid consent to sex with C, rendering sex between them permissible. Specifically, I argue that there is compelling reason to endorse the Prior Consent Thesis, which states the following: D, when competent, can give valid prior consent to sex with her competent partner (C) that will take place after she has dementia, assuming that D is the same person as she was when she gave prior consent, meaning that, if D, when competent, gave prior consent to sex with C, then C may permissibly have sex with D. In Section 2, I explain both the background and the existing literature on this issue. In Section 3, I outline relevant stipulations about the kinds of cases I will be examining. In Section 4, I defend the Prior Consent Thesis. And, in Section 5, I address objections to the Prior Consent Thesis. [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]

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]

Caregivers, or persons who provide unpaid support to a loved one who could not manage to live independently or whose health or well-being would deteriorate without this help, are increasingly common. These rates have only increased with the COVID-19 pandemic forcing many to care for sick family members in the short or long term. Unfortunately, caregiving is associated with significant burden and health risks, not only for caregivers themselves but also for the care recipients of overwhelmed caregivers. These risks have also been exacerbated by the social isolation of the COVID-19 pandemic. Although interventions exist which have been proven to reduce caregiver burden, education on these interventions is lacking, partly because there has not been a memorable framework on how to care for caregivers. In this paper, an innovative framework to teach clinicians about caring for caregivers is introduced, the C.A.R.E. framework: Caregiver well-being, Advanced care planning, Respite, and Education. This simple framework will help providers become aware of caregiver needs, comfortable in addressing their needs, and able to suggest interventions proven to reduce caregiver burden. Knowledge of this framework should start with medical students so that they can incorporate this critical aspect of primary care into their clinical practice early on in their careers. If providers can simply remember to perform these four interventions, to C.A.R.E. for our caregivers, then they will make a significant impact on the lives of both our patients and their loved ones, during the present COVID-19 pandemic and thereafter. [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]

Cooley's argument that persons with pre‐dementia have a Kantian duty to die has led to much debate. Cooley gives two reasons for his claim, the first being that a person with pre‐dementia should end his/her life when he/she will inevitably and irreversibly lose rationality and be unable to live morally as a result. This paper argues that this reason derives from an unsubstantiated premise and general confusion regarding the condition for a Kantian duty to die. Rather, a close reading of Kant reveals that such a condition occurs when a person confronts an external handicap that does not undermine his/her rational ability but deprives him/her of the possibility of living the way a person should. People do not confront this experience with progressive dementia. The other reason Cooley proposes is that a person should not allow their continued existence to become a burden to others. This claim partly stems from a radical interpretation of a case discussed by Kant and is partly based on a misuse of Kant's formulation of humanity. Based on a prudent inference from Kantian ethics, this article argues against Cooley that persons with pre‐dementia have no Kantian duty to die. [ABSTRACT FROM AUTHOR]

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

Background: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information. Method: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis. Results: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital – a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record. Conclusions: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice. [ABSTRACT FROM AUTHOR]

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

Shared decision making honors patient autonomy, particularly for preference-sensitive care decisions. Shared decision making can be challenging, however, when patients have impaired decision-making capacity. Here, after presenting an illustrative case example, this paper proposes a capacity-adjusted "sliding scale" approach to shared decision making. [ABSTRACT FROM AUTHOR]