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Aim: This article is a report of a study protocol designed to explore what factors inform healthcare professionals' clinical decision‐making when providing end of life care for people with dementia in primary care. Design: The proposed study will adopt a qualitative study design, utilizing an ethnographic approach. Methods: A mixed sample group of registered healthcare professionals, including district nurses, specialist nurses and general practitioners, will be purposively sampled and recruited from one health board in Wales, which will cover three settings in primary care. A multi‐method approach will be utilized to provide rich data, including non‐participant observation, semi‐structured interviews, and review of key documents. Data will be managed using NVivo 12 and analysed thematically. Ethics approval was gained in April 2022. Discussion: Little is known about the end of life care decision‐making process of healthcare professionals caring for people with dementia in primary care settings. This study will therefore address this pertinent gap. The study findings may also be transferable to healthcare professionals working in similar clinical settings across the UK. Impact It is anticipated that this study will inform the subsequent development of an intervention that can be used by healthcare professionals to support decision making and subsequently the provision of quality end of life care in primary care for people with dementia. [ABSTRACT FROM AUTHOR]

Background: Many individuals with advanced dementia die in hospital, despite preferring home death. Existing evidence of factors affecting their place of death is inconsistent. To inform policies/practices for meeting needs/preferences, systematically establishing the evidence is pertinent, particularly given the exponential rise in advanced dementia prevalence. Aim: To identify factors influencing where people with advanced dementia die. Design and data sources: This systematic review with meta-analysis was registered on PROSPERO (CRD42022366722). Medline, CINAHL, PsycINFO, SocINDEX and a grey literature database, Overton, were searched on 21/12/2022, supplemented by hand-searching/citation tracking. Papers reporting quantitative data on factors associated with place of death in advanced dementia were included and appraised using QualSyst. Data were analysed using random effects with the certainty of evidence determined using the GRADE criteria. Results: Thirty-three papers involving >5 million individuals (mean age = 89.2 years) were included. Long-term care setting deaths were relatively common but hospice deaths were rarer. Marriage's association with home death underscores social networks' importance, while younger age's and male gender's associations with hospital death demonstrate patients' and families' interdependency. Pneumonia/COPD's opposing effects on hospital deaths with cancer/functional impairment highlight the challenges of advanced dementia care. Unlike hospital/nursing home bed availability's lack of effect, capitated funding (fixed-amount-per-patient-per-period) decreased hospital death likelihood. Conclusion: This comprehensive review of place of death determinants highlight the profound challenges of advanced dementia end-of-life care. Given that bed capacity did not affect place of death, a capitation-based, integrated palliative care model would appear more likely to meet patients' needs in a resource-constrained environment. [ABSTRACT FROM AUTHOR]

Background: Deaths in paediatric intensive care units (PICUs) are not uncommon. End-of-life care in PICUs is generally considered more challenging than other settings since it is framed within a context where care is focused on curative or life-sustaining treatments for children who are seriously ill. This review aimed to identify and synthesise literature related to the essential elements in the provision of end-of-life care in the PICU from the perspectives of both healthcare professionals (HCPs) and families. Methods: A systematic integrative review was conducted by searching EMBASE, CINAHL, MEDLINE, Nursing and Allied Health Database, PsycINFO, Scopus, Web of Science, and Google Scholar databases. Grey literature was searched via Electronic Theses Online Service (EthOS), OpenGrey, Grey literature report. Additionally, hand searches were performed by checking the reference lists of all included papers. Inclusion and exclusion criteria were used to screen retrieved papers by two reviewers independently. The findings were analysed using a constant comparative method. Results: Twenty-one studies met the inclusion criteria. Three elements in end-of-life care provision for children in the PICUs were identified: 1) Assessment of entering the end-of-life stage; 2) Discussion with parents and decision making; 3) End of life care processes, including care provided during the dying phase, care provided at the time of death, and care provided after death. Conclusion: The focus of end-of-life care in PICUs varies depending on HCPs' and families' preferences, at different stages such as during the dying phase, at the time of death, and after the child died. Tailoring end-of-life care to families' beliefs and rituals was acknowledged as important by PICU HCPs. This review also emphasises the importance of HCPs collaborating to provide the optimum end-of-life care in the PICU and involving a palliative care team in end-of-life care. [ABSTRACT FROM AUTHOR]

Despite the substantial personal and economic implications of end-of-life decisions, many individuals fail to document their wishes, which often leads to patient dissatisfaction and unnecessary medical spending. We conducted a randomized trial of 1,200 patients aged 55 years and older to facilitate advance directive (AD) completion and better understand why patients fail to engage in high-value planning. We found that including a physical AD form with paper letters as a nudge to decrease hassle costs increased AD completion by 9.0 percentage points (95% confidence interval [CI] = [4.2, 13.9] percentage points). The intervention was especially effective for individuals aged 70 years and older, as AD completion increased by 17.5 percentage points (95% CI = [5.7, 9.4] percentage points). When compared with the impact of costless electronic reminders, each additional AD completion from the letter interventions costs as little as US$37. Our findings suggest that simple, inexpensive interventions with paper communication as behavioral nudges can be effective, especially in older populations. [ABSTRACT FROM AUTHOR]

Background: Delivery of consistent patient-centred care at end-of-life care continues to challenge healthcare providers and research continues to suggest that peoples' needs are not being reliably met. Consequently, healthcare services are looking to innovate how support is provided, such as commissioning doulas to support dying people and those close to them. Objective: Within the United Kingdom, there is little existing research about peoples' experience of receiving end-of-life doula support. This paper outlines the design of a survey for the family or friends of a person who received end-of-life doula support. Design: To evaluate the role of an end-of-life doula in supporting the dying person and those who care for them, we designed a post-bereavement survey as part of a wider evaluation strategy of doula services. Following multiple literature reviews and an iterative process of consulting with the professional organisation and previous service users, a questionnaire was developed to collect this data. This survey is hosted online, with paper copies available to widen accessibility. Conclusion: End-of-life doula support is a relatively new area of provision for dying people and those important to them, such as family and friends. It is even more innovative to have doula support commissioned as part of a locality's healthcare service. There is a dire need for empirical research to understand the impact of this further. The process of researching the area and designing the evaluation survey for this service revealed the complexity of the role and the difficulty of capturing what was found to be helpful for the dying person and those around them. [ABSTRACT FROM AUTHOR]

Background: Mental health is an issue of social and economic importance. Sociocultural and scholarly attention has largely focused on the negative aspects of mental health. That is, on mental disorders and illness and how they adversely impact our lives. In contrast, this paper forms part of a recent alternative empirical perspective in discourse-based research, by focusing on the positive aspects of mental health. In this article, we investigate how end-of-life care workers construct their positive psychological states. Methods: Our data are 38 audio-recorded and transcribed semi-structured interviews with end-of-life care workers from Hong Kong and the United Kingdom. We utilized thematic analysis to identify common categorial strands across the data and discourse analysis to identify the linguistic strategies that these interviewees used to talk about their mental health. Results: Our thematic analysis generated a superordinate theme across the interviews—namely, that of end-of-life care workers talking about their positive psychological states. We identify three generic ways that end-of-life care workers talked about these psychological states; by "foregrounding the positive," "reformulating the negative," and "dismissing the negative." Our analysis also explicates how interviewees connected social and organizational support to being a benefit to their psychological states. Conclusions: Our work contributes to existing discourse-based and sociolinguistic research on mental health by turning their focus towards a consideration of its positive dimensions. We also identify recurrent linguistics strategies used by people to construct their mental health. Our analyses point to the importance of investigating mental health as a multidimensional concept that considers participants' own reflections on their mental health. [ABSTRACT FROM AUTHOR]

There is an urgent and unmet need for specialist palliative care services in residential aged care. The Specialist Palliative Care in Aged Care (SPACE) Project aimed to improve palliative and end-of-life care for older people living in residential aged care facilities in Queensland. A representative working group developed a series of service principles around palliative care practice in aged care (comprehensive resident-focused care, streamlined service, and capacity building). Funding was allocated by population to the health services in Queensland to adapt and implement models of care aligned with these principles. SPACE successfully implemented a variety of decentralised models of care across Queensland. The critical elements for the success of SPACE were the use of an expert working group to define the core innovation, networking and implementation support from the central project team and community of practice, and adaptable models of care led by local facilitators. Lessons learned from this real-world case study could be adopted to guide and ensure the successful implementation and sustainability of future complex interventions in healthcare settings, both nationally and internationally. What is known about the topic? There is limited palliative care support for the 36% of Australians who die in residential aged care. What does this paper add? This paper describes the development of the Specialist Palliative Care in Aged Care (SPACE) Project, using locally tailored models of care to improve palliative and end-of-life care in aged care facilities across Queensland. What are the implications for practitioners? Critical elements for improving residents' palliative and end-of-life care included creation of an expert working group to define the innovation state-wide, a central project team that supported implementation, a community of practice, and local facilitation. [ABSTRACT FROM AUTHOR]

In the face of death, different ethnic groups have unique coping ways. The physical care and spiritual care for the dying can demonstrate the diversity and particularity of ethnic cultural thought. Taking two villages in the interlaced residential areas inhabited by Han, Tibetan, and Hui ethnic groups in Linxia and Wuwei of Gansu Province as examples, this paper focuses on the presentation and significance of multi-ethnic cultural integration in the process of end-of-life care, with a focus on spiritual care. One main point of this paper is that, although hospice care in the modern medical sense is not really implemented in the vast rural areas of China, local end-of-life care, based on the village medical system and religious rituals, equally plays an important role. This is mainly manifested through the implementation of the Narcotics Card System and the widespread spiritual care. The second main point of this paper is that the form of end-of-life care, which embodies the integration of ethnic cultures, contains a certain degree of nursing functions, while taking into account the spiritual care needed by the dying and the grief consolation needed by the bereaved family. Considering the lack of spiritual care and bereavement management in China's medical space, the religious approaches to end-of-life care, as delineated in this study, could serve as a source of inspiration for the country's efforts to integrate hospice services into its healthcare system. In short, compared with Western forms of hospice care, in which modern medicine constitutes the main body, China's local end-of-life care is more reflected in the diversity and integration of spiritual care for the dying. [ABSTRACT FROM AUTHOR]

Patients with serious illnesses often do not engage in discussions about end-of-life care decision-making, or do so reluctantly. These discussions can be useful in facilitating advance care planning and connecting patients to services such as palliative care that improve quality of life. Terror Management Theory, a social psychology theory stating that humans are motivated to resolve the discomfort surrounding their inevitable death, has been discussed in the psychology literature as an underlying basis of human decision-making and behavior. This paper explores how Terror Management Theory could be extended to seriously ill populations and applied to their healthcare decision-making processes and quality of care received. [ABSTRACT FROM AUTHOR]

This paper explores recently emerging challenges in Medical Assistance in Dying on Psychiatric Grounds (MAID-PG), focusing on ethical, clinical, and societal perspectives. Two themes are explored. First, the growing number of young MAID-PG requestors and the public platform given to MAID-PG requests. Ethically, media portrayal, particularly of young patients' testimonials, requires scrutiny for oversimplification, acknowledging the potential for a Werther effect alongside the absence of a Papageno effect. This highlights the need for better communication policies for media purposes. Second, cautionary considerations regarding psychiatric care adequacy are addressed. In MAID-PG this includes reasons underlying psychiatrist reluctance to engage in MAID-PG trajectories, leading to growing waiting lists at end-of-life-care centers. Addressing current shortages in psychiatric care adequacy is crucial, necessitating less narrow focus on short-term care trajectories and recovery beside transdiagnostic treatment approaches, expanded palliative care strategies, and integrated MAID-PG care. [ABSTRACT FROM AUTHOR]

Purpose of Review: This paper aims to investigate the crucial role of palliative care in the management of chronic liver disease (CLD) and cirrhosis. Faced with a global surge in liver-related morbidity and mortality, our goal is to understand the impact of early engagement with palliative care specialists on symptom management, quality of life, and the overall trajectory of advanced liver disease. Recent Findings: While strides have been made in preventing and treating specific etiologies of CLD, such as viral infections, the escalating rates of alcohol use and obesity present new challenges for physicians. Despite advancements, liver transplantation unfortunately remains an elusive solution for many due to various constraints. Our review underscores the underutilization of palliative care in this context, emphasizing its potential to mitigate symptoms and enhance the overall well-being of patients and their caregivers. Summary: Implementing palliative care early during CLD proves instrumental in reducing symptoms, hospitalizations, and resource utilization. This not only improves the quality of life for patients but also signifies a paradigm shift in approaching the uncertainties surrounding advanced liver disease. Urging further research and global initiatives, our findings advocate for a comprehensive integration of palliative care in the holistic management of patients with advanced liver disease. [ABSTRACT FROM AUTHOR]

We carried out a narrative review and thematic analysis of literature on the physical health care, mental health care and social care of trans older adults to ascertain what is known about older trans adults' contacts with and use of health and social care. Thirty papers were found: a majority originated in the United States of America. Five themes were identified: experience of discrimination/prejudice and disrespect; health inequalities; socio-economic inequalities; positive practice; and staff training and education. The first three themes present challenges for providers and service users. Experiences of discrimination/prejudice and disrespect over the course of their lives powerfully influence how older trans adults engage with care services and practitioners. Health and socio-economic inequalities suggest that older trans adults are likely to have greater need of services and care. The remaining two themes offer opportunities for service improvement. We conclude that more research is needed, that there is a strong argument for taking a lifecourse perspective in a spirit of cultural humility, and that contextual societal factors influence service users and providers. We identify positive trans-inclusive practices which we commend to services. More needs to be done now to make older adult services appropriate and welcoming for trans service users. [ABSTRACT FROM AUTHOR]

This theoretical paper describes a classification with accompanying analysis of the main forms of social conduct at the end of life that goes beyond our usual understanding of sociological characterisations of dying. A taxonomy of end-of-life conduct is presented that illustrates and categorises past and contemporary sociological studies of end-of-life conduct and experiences. The categories include embodiment-led dying, systems-led dying, criticism-led dying, endangerment, and anti-dying. Discussion of this spectrum of behaviour is compared with current research and theory in the sociology of dying resulting in critical observations about limitations and omissions in the current work of this field. The paper ends with identification of theoretical limitations before discussing implications for future theory, research, and policy development for the sociology of dying and for end-of-life studies more generally. [ABSTRACT FROM AUTHOR]

Death and dying are woven throughout the work of home care aides, and yet the care they provide at the end of life (EOL) remains poorly understood. This is due in part to the multiple circumstances under which aides provide EOL care. In this paper, we elucidate the EOL care experiences of aides working in home care agencies in New York City. We conducted in-depth interviews with 29 home care aides, and we analyzed these data using inductive, team-based methods. Our findings show that aides may not be aware of or accept a client's EOL status, and they may avoid EOL care. These conditions shape EOL care, and we detail the committed forms of care aides provide when they are aware and accepting. We recommend improved training, support systems, and policy change to enhance aides' contributions to EOL care, while protecting aides' health and well-being. [ABSTRACT FROM AUTHOR]

Good People, by Singaporean playwright Haresh Sharma, unmasks racial and religious tensions between Singapore's increasingly diverse racial groups and the attendant ramifications on the healthcare ecosystem and the doctor-patient relationship. Drawing upon Michel Foucault's notion of heterotopia, this paper argues that, in Good People, Sharma employs theater as a site of resistance by calling into question state and medical authority. First, state authority is challenged through the play's scrutiny of the ideological principle of multiculturalism and its usefulness in fostering meaningful cross-cultural exchanges and acceptance of different cultural and religious beliefs in the clinic. Second, the play destabilizes medical authority by surfacing the complex relationship between the doctor's unconscious biases, racial and religious prejudice, and clinical judgment, thereby casting doubt on medicine's claims of objectivity. In doing so, this paper argues, the play resists simplistic binary categorizations of the behaviors and motivations of the characters into good/bad or right/wrong, instead raising questions about power, knowledge, and contesting truths within the confines of the cultural space of a hospice. [ABSTRACT FROM AUTHOR]

Providing and maintaining hospice and palliative care during disasters poses significant challenges. To understand the impact of disasters on the provision of hospice and palliative care and the disaster preparedness initiatives in the field, a systematic review was undertaken. Eligibility criteria for the selection of studies were: peer-reviewed original research papers addressing HPC during disasters published between January 2001 and February 2023 in English. The databases CINAHL, MEDLINE, APA PsycInfo, APA PsycArticles, and SocINDEX were searched with textword and MeSh-terms between October 2022 and February 2023. The Mixed Methods Appraisal Tool (MMAT) was used to assess the quality of the studies. Content analysis was performed. The results are presented in the form of a narrative synthesis. Of 2581 studies identified, 57 met the inclusion criteria. Most studies were published recently on the impact of the COVID-19 pandemic. Four main themes were identified in the literature: disruption of the system, setting-specific differences, emotional challenges, and system adaptation. Overall, strategies to tackle hospice and palliative care needs have been poorly integrated in disaster preparedness planning. Our findings highlight the need to strengthen the resilience of hospice and palliative care providers to all types of disasters to maintain care standards. [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]

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: Dying well at home usually requires the help and assistance of an informal caregiver. This role is usually unpaid, wide‐ranging and oftentimes demanding. From diagnosis to death of a loved one, informal caregivers can experience one and frequently numerous transitions, however, little is known about this process. The purpose of this scoping review is to chart, explore and understand caregivers' experiences of transitioning when providing end‐of‐life care. A preliminary search of the literature indicated a paucity of research highlighting a notable absence of caregiver's perspectives and acknowledgements of the support they need to ensure successful transitions during this time. Consequently, this review has the potential to make a valuable contribution to the literature. Methods: Arksey and O'Malley's (2005) framework, further enhanced by Levac et al. (2010) and Peters et al. (2020) was used to conduct this scoping review. The Extension for Scoping Reviews (PRISMA‐ScR) guided reporting. A systematic search of the databases PUBMED, PsychINFO, CINAHL, EMBASE, and Web of Science and a selection of grey literature was undertaken from the year 1990 to date by two researchers. Titles and abstracts of the literature identified were screened and finally, a narrative synthesis of 11 articles was undertaken to answer the following research question: What is known from the literature about informal caregivers' transitions when caring for a dying person in the home? Conclusions: Current knowledge on this topic is limited; however, from this review, two main themes were identified: 'Challenges arising during transitioning' with subthemes of burden of care and fading away. The second theme 'Coping strategies' comprised subthemes of meaning‐making, seeking normality and hope. This evidence may support the development of transitional care interventions in the future and improve patient and caregiver outcome measures and experiences to inform a larger research study exploring this phenomenon. Patient or Public Contribution: N/A as this is a Scoping Review. What this paper contributes to the wider global community: An understanding of the experiences of transitioning when caring for a loved one dying at home could help mitigate challenges informal caregivers face when providing end‐of‐life care in the home.While informal caregivers are crucial to support people who want to die at home, the role is often invisible and family carers need support and recognition to reduce the burden of care and challenges they experience as they transition in their role. [ABSTRACT FROM AUTHOR]

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The study discusses a new approach to parental agency in pediatric palliative care based on an active form of caregiving. It also explores the possibility of a positive conceptualization of parental agency in its relational context. The paper begins with an illustrative case study based on a clinical situation. This is followed by an analysis of various aspects of parental agency based on empirical studies that disclose the insufficiencies of the traditional approach to parental agency. In the next step, parental agency is analyzed from a reality‐based perspective as an activity focused on relationships and the cognitive capacity of parents vis‐a‐vis their seriously ill children. The paper also considers the importance of the cultural and social contexts in which parental agency and decision‐making take place. This agency is addressed not as individualistic in form, and nor is it exercised in terms of fixed choices. Rather, the focus is on its dynamic and future‐oriented aspects. Consequently, parental agency should be comprehended not only as a form of proxy agency representing the child's best interests but also as a complex decision‐making process in which the parents learn from their child how to become good, compassionate caregivers and at the same time good parents. [ABSTRACT FROM AUTHOR]

Background: As many patients are spending their last days in critical care units, it is essential that they receive appropriate end-of -life care. However, cultural differences, ethical dilemmas and preference practices can arise in the intensive care settings during the end of life. Limiting therapy for dying patients in intensive care is a new concept with no legal definition and therefore there may be confusion in interpreting the terms 'no resuscitation' and 'comfort care' among physicians in Middle East. Therefore, the research question is 'What helps or hinders effective end-of-life care in adult intensive care units in Middle Eastern countries?' Methods: The authors conducted a comprehensive systematic literature review using five electronic databases. We identified primary studies from Medline, Embase, CINAHL, Psycinfo and Scopus. The team assessed the full-text papers included in the review for quality using the Joanna Briggs Institute checklist (JBI). We completed the literature search on the first of April 2022 and was not limited to a specific period. Results: We identified and included nine relevant studies in the review. We identified five main themes as end-of-life care challenges and/or facilitators: organisational structure and management, (mis)understanding of end-of-life care, spirituality and religious practices for the dying, communication about end-of-life care, and the impact of the ICU environment. Conclusions: This review has reported challenges and facilitators to providing end-of-life care in ICU and made initial recommendations for improving practice. These are certainly not unique to the Middle East but can be found throughout the international literature. However, the cultural context of Middle East and North Africa countries gives these areas of practice special challenges and opportunities. Further observational research is recommended to confirm or modify the results of this review, and with a view to developing and evaluating comprehensive interventions to promote end-of-life care in ICUs in the Middle East. [ABSTRACT FROM AUTHOR]

Background: In today's society the ongoing discussion about euthanasia triggers emotionally charged debates surrounding the delicate balance between valuing life and respecting an individual's autonomy. With the persistence of this debate, there has been the emergence of the concept of the so-called alternative: palliative care. Positioned as a substitute for euthanasia, palliative care aims to alleviate suffering in terminally ill patients without engaging in the ethical dilemmas associated with euthanasia. Methods: This paper explores the facets of palliative care highlighting its core objectives such as providing adequate pain relief as a compassionate alternative to euthanasia. Results: By examining palliative care as a comprehensive approach to end of life support, this study challenges the perceived necessity of euthanasia and advocates, for compassionate and dignified end of life experiences. Conclusion: In conclusion, palliative care emerges as a viable and ethically sound alternative to euthanasia, emphasizing the importance of compassionate end-of-life care and pain management. [ABSTRACT FROM AUTHOR]