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Objectives Advance care planning (ACP), which comprises a living will, durable power of attorney for healthcare (DPAHC), and end-of-life discussions, is an inherently relational process. However, it is unclear how marital status affects men's and women's ACP over the life course. Drawing on social control and gender-as-relational frameworks, we examine marital status differences in ACP and how these patterns differ by gender and age. Methods Data are from the 2020 Health and Retirement Study (HRS), a representative sample of U.S. older adults (N  = 7,074). We estimate logistic regression models to evaluate whether marital status differences in ACP are moderated by age and gender, and multinomial logistic regressions to examine age and gender differences in DPAHC designations among married parents. Analyses are adjusted for sociodemographic and health covariates. Results Multivariable analyses revealed significant moderation effects for discussions only. Among married/cohabiting persons, women are more likely than men to have end-of-life discussions, with gender differences diminishing slightly at oldest ages. Among divorced persons in their 60s and 70s, women are much more likely than men to have had discussions, although this gap converges among the oldest-old. Conversely, young-old widowed men and women are equally likely to have discussions, although women are increasingly likely to do so with advancing age. Men are more likely than women to name their spouse as DPAHC, yet this gap diminishes with age. Discussion Healthcare providers can better guide end-of-life consultations if they understand how men's and women's family relationships change with advancing age. [ABSTRACT FROM AUTHOR]

While society attempts to shield children from death, many are exposed to and impacted by death in their early years, either through the death of someone they know or through media portrayals of death. Even though adults often avoid discussing death with children, children as young as age three can understand the concept and benefit from discussing it with a trusted adult. One way to foster these conversations is through reading picturebooks. This research examines young children's literature that focuses on dying and death. We report findings from a systematic review of children's books focusing on how death is portrayed and discussed in these books. Data indicates that most books are written in a way that does not align with the explicit messaging young children need on the topic. There are also gaps in which characters died, how the characters died, and how much diversity is present within the books. Many books lack additional resources, which would be a beneficial support as parents and teachers tackle this tough topic. [ABSTRACT FROM AUTHOR]

Over the second half of the twentieth century, advances in medicine enabled treatment of previously life-ending illnesses. The resulting shift in place of care for mortally sick people from home to hospital succeeded in preventing many premature deaths, yet it also caused the public to lose familiarity with the process of 'ordinary dying.' The loss of public understanding of dying has resulted in avoidance of conversations about dying, in failure to anticipate and plan ahead, and in avoidable distress as deathbed companions misinterpret features of the dying process as suffering. This opinion piece reflects on the need for health and care workers to understand, recognise and talk about the process of dying, the better to prepare and support the elderly and sick people in our care and their companions. [ABSTRACT FROM AUTHOR]

Background: Journeying with patients throughout their cancer trajectory and caring for them at the end of life can lead to emotional and moral distress in oncologists, negatively impacting their personal and professional identities. A better understanding of how transitions in care goals affect oncologists can shed light on the challenges faced and the support required. This study explored the impact of care transitions on oncologists' professional identity formation (PIF). Methods: From September to December 2023, semi-structured interviews were conducted with oncologists in a palliative care center in Singapore. The Ring Theory of Personhood (RToP) was used as a framework to capture the effects of experiences with patients transitioning from curative to palliative care on the oncologists' sense of self and identity. Data were analyzed using both inductive and deductive qualitative analysis. Results: Participants included six female and six male physicians, aged 30 to 53 years (mean 38 years), with an average of 9.75 years of experience as oncologists. The main domains identified were 1) challenges faced in transitioning patients to palliative care, 2) the impact of dealing with dying patients on oncologists, and 3) coping mechanisms. Conclusion: Oncologists experience self-doubt and moral distress as they manage transitions in care. The PIF of oncologists can be supported through reflection and introspection, peer support, and interventions to promote self-care — ultimately enabling them to make meaning of their experiences, renew family ties, and reaffirm their commitment to the profession. [ABSTRACT FROM AUTHOR]

End-of-life (EOL) doulas are care providers and companions that offer spiritual, emotional, psychosocial, or psychological care to a person who is dying as well as their family and loved ones (Fukuzawa & Kondo, 2017). However, much like other options for EOL care (e.g., hospice, palliative care), their practice is often underutilized and misunderstood. There is limited research on EOL doulas, including who they are and what they do, leaving an opening for future studies to explore the topic (Krawczyk & Rush, 2020). As part of a larger investigation to gather information on EOL doulas, 12 in-depth, semi-structured interviews were conducted with certified doulas regarding their experiences. Three themes emerged from this project: motivations to become an EOL doula, roles of an EOL doula, and challenges of an EOL doula. In this article, only two themes, motivations to become an EOL doula and roles of an EOL doula are discussed. [ABSTRACT FROM AUTHOR]

Introduction: Caring for the dying can generate anxiety and emotional distress, particularly in nursing students, and perceived competence could play a crucial role in enabling nurses to perform their duties with greater confidence. Unfortunately, few studies describe the relationship between students' nursing attitudes and perceived self-efficacy in palliative care (PC). To overcome this gap, this survey aimed to assess the attitudes towards dying patients and the perceived competence of nursing students in palliative care at different universities in the south of Italy. Methods: A cross-sectional study was conducted from September 2022 to March 2023 involving nursing students from the three major Sicilian universities (Italy). The study included a survey investigating socio-demographic characteristics, palliative care training, knowledge about pain management, and previous experience with dying. Moreover, the Professional Competence of the Core Curriculum in Palliative Care Nursing (CCPCN) questionnaire and the Frommelt Attitudes Toward Care of the Dying—B Italian version (FATCOD-B-I) assessed competencies and emotional attitudes. Results: A total of 1913 nursing students were recruited, of which 71.3% were females, and 53.9% were in the age range of 18 to 21 years. In the multivariable analysis, practical PC training was a substantial factor in enhancing competencies (Adj-OR 2.78 [95% CI = 2.12–3.65]). Male students had higher competence odds (Adj-OR 1.38 [95% CI = 1.14–1.66]), and perceived knowledge strongly correlated with self-assessed competence. Advancement in academic years also positively influenced competence self-assessment (Adj-OR 1.98 [95% CI = 1.75–2.24]). Regarding emotional attitudes, a per-quartile increase in competence score was found to improve the attitude score (Adj-OR 1.24 [95% CI = 1.13–1.35]). Conclusions: Nursing students gain valuable experience during clinical experience. PC training and perceived knowledge of PC significantly increase nurses' competencies, and the latter seem to be strongly associated with attitudes. Thus, introducing palliative care education into nurses' core curricula could be a way to reduce anxiety and emotional distress in young students. [ABSTRACT FROM AUTHOR]

Background: Awareness-raising and education have been identified as strategies to counter the taboo surrounding death and dying. As the favoured venue for youth education, schools have an essential role to play in informing future decision-makers. However, school workers are not comfortable addressing the subjects of death and dying, which, unlike other social issues, have no guidelines to influence awareness of these subjects in youth. Objectives: To systematically explore the knowledge and practices on raising awareness about death and dying in schools, the viewpoints of the people involved (young people, school workers; parents), and the factors that either promote or hinder awareness practices. Method: The scoping review method of Levac and Colquhoun (Implement Sci 5(1):69, 2010) will be used. Using a combination of keywords and descriptors, a body of literature will be identified through 15 databases and through grey literature searches, manual searches, consultation of key collaborators, and the list of relevant literature. Publications since 2009 will be selected if they relate directly to awareness-raising about death and dying in schools. Writings will be selected and extracted by two independent people, and conflicts resolved by consensus. The extracted data will be synthesized using a thematic analysis method. Experts from a variety of disciplines (health sciences, humanities, social sciences, and education) will be consulted to enhance the interpretation of the preliminary results. Results will be presented in narrative form and will include tables and diagrams. Conclusion: The results of this scoping review will contribute to the development of educational practices adapted to young people and to the identification of future avenues of research on awareness of death and dying. [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]

The inevitability of death does not change its variability. In The Hour of Our Death (1981), Philippe Ariès positioned the sudden, unexpected, mass death of epidemics (especially from the Black Death) against the personalized, domesticated death for which one had time to prepare. The domesticated death, so he argued, appeared during a specific epoche of European history and was an historical inflection point, coinciding with the 18th century Enlightenment. Ariès looked unfavorably at this climax for what he saw as a process of de‐spiritualization, waning of faith, and the beginnings of commercialization and medicalization of death. Since his publications, scholars from a range of fields—history, anthropology, literature, religion, and art—have sought to address the omissions, exaggerations, and misleading claims in Ariès' account and, in doing so, have developed a rich field studying the cultural history and significance of death. Now situated in a transdisciplinary space, studying the good death and the tradition of ars moriendi (the art of the dying well) offers new perspectives and answers new questions about death. Although there is much that could be discussed, the focus here will be on recent trends in scholarship on the tradition of ars moriendi and its relationship to the interrelated histories of burial, the role of clerical and lay comforters, and the role of physicians as well as the historical and religious‐philosophical problems of the prolongation of life and sudden death. [ABSTRACT FROM AUTHOR]

Introduction: Caring for the dying can generate anxiety and emotional distress, particularly in nursing students, and perceived competence could play a crucial role in enabling nurses to perform their duties with greater confidence. Unfortunately, few studies describe the relationship between students’ nursing attitudes and perceived self-efficacy in palliative care (PC). To overcome this gap, this survey aimed to assess the attitudes towards dying patients and the perceived competence of nursing students in palliative care at different universities in the south of Italy. Methods: A cross-sectional study was conducted from September 2022 to March 2023 involving nursing students from the three major Sicilian universities (Italy). The study included a survey investigating socio-demographic characteristics, palliative care training, knowledge about pain management, and previous experience with dying. Moreover, the Professional Competence of the Core Curriculum in Palliative Care Nursing (CCPCN) questionnaire and the Frommelt Attitudes Toward Care of the Dying—B Italian version (FATCOD-B-I) assessed competencies and emotional attitudes. Results: A total of 1913 nursing students were recruited, of which 71.3% were females, and 53.9% were in the age range of 18 to 21 years. In the multivariable analysis, practical PC training was a substantial factor in enhancing competencies (Adj-OR 2.78 [95% CI = 2.12–3.65]). Male students had higher competence odds (Adj-OR 1.38 [95% CI = 1.14–1.66]), and perceived knowledge strongly correlated with self-assessed competence. Advancement in academic years also positively influenced competence self-assessment (Adj-OR 1.98 [95% CI = 1.75–2.24]). Regarding emotional attitudes, a per-quartile increase in competence score was found to improve the attitude score (Adj-OR 1.24 [95% CI = 1.13–1.35]). Conclusions: Nursing students gain valuable experience during clinical experience. PC training and perceived knowledge of PC significantly increase nurses’ competencies, and the latter seem to be strongly associated with attitudes. Thus, introducing palliative care education into nurses’ core curricula could be a way to reduce anxiety and emotional distress in young students.

Abstract Background Journeying with patients throughout their cancer trajectory and caring for them at the end of life can lead to emotional and moral distress in oncologists, negatively impacting their personal and professional identities. A better understanding of how transitions in care goals affect oncologists can shed light on the challenges faced and the support required. This study explored the impact of care transitions on oncologists’ professional identity formation (PIF). Methods From September to December 2023, semi-structured interviews were conducted with oncologists in a palliative care center in Singapore. The Ring Theory of Personhood (RToP) was used as a framework to capture the effects of experiences with patients transitioning from curative to palliative care on the oncologists’ sense of self and identity. Data were analyzed using both inductive and deductive qualitative analysis. Results Participants included six female and six male physicians, aged 30 to 53 years (mean 38 years), with an average of 9.75 years of experience as oncologists. The main domains identified were 1) challenges faced in transitioning patients to palliative care, 2) the impact of dealing with dying patients on oncologists, and 3) coping mechanisms. Conclusion Oncologists experience self-doubt and moral distress as they manage transitions in care. The PIF of oncologists can be supported through reflection and introspection, peer support, and interventions to promote self-care — ultimately enabling them to make meaning of their experiences, renew family ties, and reaffirm their commitment to the profession.

Abstract Background Awareness-raising and education have been identified as strategies to counter the taboo surrounding death and dying. As the favoured venue for youth education, schools have an essential role to play in informing future decision-makers. However, school workers are not comfortable addressing the subjects of death and dying, which, unlike other social issues, have no guidelines to influence awareness of these subjects in youth. Objectives To systematically explore the knowledge and practices on raising awareness about death and dying in schools, the viewpoints of the people involved (young people, school workers; parents), and the factors that either promote or hinder awareness practices. Method The scoping review method of Levac and Colquhoun (Implement Sci 5(1):69, 2010) will be used. Using a combination of keywords and descriptors, a body of literature will be identified through 15 databases and through grey literature searches, manual searches, consultation of key collaborators, and the list of relevant literature. Publications since 2009 will be selected if they relate directly to awareness-raising about death and dying in schools. Writings will be selected and extracted by two independent people, and conflicts resolved by consensus. The extracted data will be synthesized using a thematic analysis method. Experts from a variety of disciplines (health sciences, humanities, social sciences, and education) will be consulted to enhance the interpretation of the preliminary results. Results will be presented in narrative form and will include tables and diagrams. Conclusion The results of this scoping review will contribute to the development of educational practices adapted to young people and to the identification of future avenues of research on awareness of death and dying.

The illness experiences of advanced cancer patients are discussed in a Taiwanese cultural context, using an interpretive ethnographic approach (interviews and participant observations) emphasizing holism and symbolic interactionism. A total of 23 advanced cancer patients from different counties in Taiwan were recruited over a 42-month period. The researcher followed their progress as they approached death to better understand their terminal cancer experiences. An interpretive analysis guided by Agar's hermeneutic cycle approach revealed five emic dimensions: feeling the oppression of death, fighting alongside family, intensifying bodily healing efforts, settling unfinished business, and ending the struggle to control pain. Implications for caregivers are discussed. [ABSTRACT FROM AUTHOR]

There is currently a renewed interest in research and development in the production and application of natural dyes for dyeing textile materials due to the growing popularity of eco-friendly lifestyles based on the use of environmentally friendly products. The article presents the research results into an environmentally friendly, energy-efficient technology for dyeing wool yarn using natural dyes. The approach aims to reduce the load on wastewater while enhancing color intensity and maintaining the color range of the textile material through the use of biomordants. A shortened, environmentally friendly dyeing scheme is proposed, the distinctive features of which are the replacement of the many-hour process of preparing natural raw materials for dyeing with ultrasonic treatment for 40 minutes at a generator power of 70W. This treatment intensifies the extraction of dyes and reduces the consumption of natural raw materials, resulting in vibrant colors during subsequent dyeing. The integrated processes of extraction, dyeing and pickling contribute to efficiency. Dying substances were extracted from the crushed root of Potentilla erecta; the plant is non-toxic and is widely used for medicinal purposes. Biomordants such as Aloe Vera juice, sauerkraut juice, and tartaric acid were used. The study reveals that it is advisable to dye wool yarn with an aqueous solution of cinquefoil roots at a working bath temperature of 80 °C, which will ensure maximum diffusion of dye molecules into the fiber. By combining dye extraction from natural raw materials and dyeing processes, while reducing the working bath temperature from 100 to 80 °C, the energy intensity of the technology for coloring wool yarn can be significantly reduced.

The topic of death and the dying is a crucial aspect of patient care, especially for individuals with terminal illnesses. However, discussions about death and dying are often avoided during patient interactions. In this article, our aim is to explore the reasons behind our fear of death and dying and to assess the importance of addressing these issues in shaping and cultivating relationships with our patients and in our personal lives. We argue that being open to impermanence is a valuable tool in our work with patients and their families and should be integrated into conversations with them. Furthermore, discussions about death and dying should play a central role in medical and nursing education as well as professional development. [ABSTRACT FROM AUTHOR]

Death is common in the ICU and often occurs after a decision to withhold or withdraw life-sustaining therapies. Care of the dying is a core skill for ICU clinicians, requiring expert communication, primarily with family of critically ill patients. Limited high-quality evidence supports specific practices related to the care of dying patients in the ICU; thus, many of the recommendations that exist are based on expert opinion. Value exists in sharing a practical approach to caring for patients during the dying process, including topics to be addressed with family members, rationales for recommended care, and strategies for implementing comfort measures only. Through dedicated preparation and planning, clinicians can help family members navigate this intense experience. After a decision had been made to discontinue life-sustaining therapies, family members need to be given a clear description of comfort measures only and provided with additional detail about what it entails, including therapies or interventions to be discontinued, monitoring during the dying process, and common features of the dying process. Order sets can be a valuable resource for ensuring that adequate analgesia and sedation are available and the care plan is enacted properly. To achieve a good death for patients, a collaborative effort among members of the care team is essential. [ABSTRACT FROM AUTHOR]

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A Massive-Open-Online-Course (MOOC) on death and dying (Dying2Learn) was offered in 2020, designed to build conversations about death as a natural part of life. In week 1, the content focused on how today's society engages with death through the language we use, humour, public mourning and funerals. This study investigated 2020 MOOC participants' responses to an online activity reflecting on funerals and memorials during the time of COVID-19. From this activity, n = 204 responses were analysed qualitatively. Themes included the positives and negatives of virtual funeral attendance (e.g. opportunity to have a way to participate when travel barriers existed, versus a sense of impersonal voyeurism); and the challenges related to the inability to physically comfort the bereaved due to physical distancing requirements. Comments made as part of this MOOC activity provide a unique insight into the community's experience of funeral changes necessitated by COVID-19, with important implications for the grieving process. [ABSTRACT FROM AUTHOR]

The present study examines the transformation of the profession of Gassals, dead body bathers in Islamic culture, from a prestigious role to a stigmatized job in modern Türkiye. Through a qualitative research design, this study employs a combination of participant observation and in-depth interviews with Gassals in Istanbul Metropolitan Municipality. In the study conducted with the purposeful convenience sampling technique, in-depth interviews were conducted with 19 participants (3 male,16 female). Ultimately, the study raises three major modernity-related claims: Modernity marginalizes death and excludes it from daily life, primarily functions to secularize the public sphere and excludes religious issues, and presents the dead body as dirty, as it sees the body as a biological mechanism, as a product of standardization and institutionalization. Their job involves physical contamination due to direct contact with deceased bodies, and this solid physical taint overshadows the overall dignity of the profession. The three main findings of the study are important. First, community members perceive it as a "reminder of death." The second is the modern human tendency to avoid death in the domains of everyday life, primarily through institutions such as hospitals. Lastly, the stigma toward gassals may be explained by them losing their status in the modern era under the influence of institutionalization despite enjoying a prestigious status in the past. [ABSTRACT FROM AUTHOR]

When doctors determine patients' life expectancy to be six months or less, patients are considered palliative. Hospice offers care for the terminally ill patient's body, mind and spirit. As part of the hospice team, chaplains support the spiritual needs of the patient and their family – a challenging and rewarding role. Dr Madison Cawdor shares his extensive experience as a United States-based hospice chaplain and explains the role's demands, including the importance of both being present with and listening to patients while also employing an interdenominational approach (i.e. supporting regardless of religious practice). Dr Cawdor explores the role's personal impacts, including being on call, sustained exposure to death and grief, and also the satisfaction of supporting patients. The demand for hospice care is projected to increase dramatically in the coming years, making understanding the demands of and approaches to this work crucial to facilitate both the recruitment and the retention of hospice chaplains. [ABSTRACT FROM AUTHOR]

Lu silk is a cultural symbol that records the unique social life and thoughts of people in southeastern Shanxi containing rich folk customs and culture and reflecting distinct regional characteristics. The weaving technology of Lu silk is not only one of the national intangible cultural heritages but also a classic representative of Shanxi silk weaving technology. However due to the decline of the Lu silk industry in the later period and the lack of relative data there are few studies on it. At present studies mainly focus on the artistic style and digital protection methods of Lu silk and studies on the craftsmanship of Lu silk are mostly limited to records of its traditional handicrafts. There is still a gap in the exploration of Lu silk jacquard craftsmanship. The research on the dyeing of Lu silk is limited to the interpretation of colors and the literature review of dyeing methods without restoring the dyeing process of Lu silk. To provide people with a deeper and more comprehensive understanding of the weaving process of Lu silk this article takes Lu silk objects woven by traditional techniques as the research object and interprets the weaving and dyeing process of Lu silk from the perspective of historical and culture region and folk customs in southeastern Shanxi. The main idea is to conduct deep research on the unique weaving process of Lu silk including symmetrical weaving the combination of stick knives and pattern needles and layered dyeing process. It can provide valuable experience for studies on intangible cultural heritage in the future so that traditional textile technology of Lu silk can be better promoted and inherited. Interpreting the weaving and dyeing techniques of Lu silk from the perspective of historical culture regional factors and folk customs in southeastern Shanxi is a typical case study of the relationship between regional culture and traditional techniques and can fill the gap in the overall framework providing valuable experience for further research on intangible cultural heritage. The research has shown that the weaving and dyeing process of Lu silk is closely related to the geographical environment historical culture folk customs and other factors in southeastern Shanxi and contains rich humanistic connotations as reflected in the following aspects. First Lu silk takes traditional symmetry as beautiful and expands the width of the covered door by combining practicality and aesthetics through symmetrical assembly techniques lifting devices and adding plain edges. The lifting device introduced with the appearance of modern jacquard machines needs to be coordinated with the stick knife to achieve the highest efficiency. Its unique embedded symmetrical structure not only saves the workload of artisans in drawing but also improves the width of the quilt surface under a limited number of stitches. The combination of artistic aesthetics and weaving techniques reflects the external characteristics of folk preferences and reflects the traditional and natural folk customs. Second the special regional characteristics of combining roughness and delicacy as well as the open exchange of Shanxi merchant culture have driven the migration of value orientation in southeastern Shanxi jointly affecting the raw materials weave structure and exquisite expression of Lu silk. Using filature silk and synthetic silk with better performance for interweaving reduces hairiness and weaving defects to a certain extent and by utilizing the differences in fineness between warp and weft the full and three-dimensional pattern can be better expressed the weave structure is often paired with satin and floating length resulting in a good appearance glossiness the various processing techniques used by the artisan such as Jiansi shadowing and Nidi all enhance the three-dimensional effect of the pattern. Third the red worshiping custom in southeastern Shanxi is in line with Chinese tradition which is mainly reflected in the main color tone of Lu silk regarding red as beautiful. Traditional Lu silk is dyed with grass and wood with safflower as the red dye. The red color of modern Lu silk originated from the national flag red. By adopting a layered dyeing process and utilizing the difference in dyeing performance between mulberry silk and artificial silk a set of warp colors and two sets of weft colors are presented. This article interprets the weaving process of Lu silk from the perspective of regional culture and folk customs in southeastern Shanxi explores the manifestation of regional cultural value in Lu silk fabrics reconstructs the cultural identity centered on Lu silk and aims to inherit and revive Lu silk skills. [ABSTRACT FROM AUTHOR]

Background: Predicting length of time to death once the person is unresponsive and deemed to be dying remains uncertain. Knowing approximately how many hours or days dying loved ones have left is crucial for families and clinicians to guide decision-making and plan end-of-life care. Aim: To determine the length of time between becoming unresponsive and death, and whether age, gender, diagnosis or location-of-care predicted length of time to death. Design: Retrospective cohort study. Time from allocation of an Australia-modified Karnofsky Performance Status (AKPS) 10 to death was analysed using descriptive narrative. Interval-censored survival analysis was used to determine the duration of patient's final phase of life, taking into account variation across age, gender, diagnosis and location of death. Setting/participants: A total of 786 patients, 18 years of age or over, who received specialist palliative care: as hospice in-patients, in the community and in aged care homes, between January 1st and October 31st, 2022. Results: The time to death after a change to AKPS 10 is 2 days (n = 382; mean = 2.1; median = 1). Having adjusted for age, cancer, gender, the standard deviation of AKPS for the 7-day period prior to death, the likelihood of death within 2 days is 47%, with 84% of patients dying within 4 days. Conclusion: This study provides valuable new knowledge to support clinicians' confidence when responding to the 'how long' question and can inform decision-making at end-of-life. Further research using the AKPS could provide greater certainty for answering 'how long' questions across the illness trajectory. [ABSTRACT FROM AUTHOR]

The Buddhist doctrine of transmigration (saṃsāra) offers a coherent model of a cycle of existence wherein a sentient being continues throughout life, survives death, traverses the afterlife, and is, sooner or later, reborn, thus inaugurating another lifecycle as a new life-form. The Buddhist tenets of no-self (anātman) and impermanence, however, deny the possibility of a self, soul, or any form of spiritual substance that persists throughout the cycle of transmigration. This article examines the argumentation developed by the Indic Buddhist philosopher, Saṅghabhadra (fl. fifth- century ce), as part of his effort to reconcile the doctrines of no-self and karmic continuity. In his *Nyāyānusāraśāstra and the *Samayapradīpikāśāstra , two seminal, yet vastly understudied, doctrinal treatises of Sarvāstivāda Abhidharma Buddhism that survive only within the translation corpus of the Sinitic scholar-monk Xuanzang (602?–664 ce), Saṅghabhadra defines the antarābhava , the 'intermediate state of existence', as the interstitial space and interim time-period existing between the locus wherein the sequentially reproducing psychic constituents of an individual sentient being, including consciousness, desert the no-longer viable body at the moment of biological death, and the locus wherein these psychic constituents become associated with a new gross physical body in the form of a new viable embryo at the moment of rebirth. By instantiating the antarābhava as an actual interval with real extension in space and time, necessarily traversed by the vast majority of sentient beings after dying in order to reach the next gross physical body, Saṅghabhadra provides, for Sarvāstivāda Abhidharma Buddhism, a rigorous account for how karma is transmitted, via the psychic constituents of a sentient being, beyond biological death into future lives, as well as future afterlives. [ABSTRACT FROM AUTHOR]

Abstract Background Volunteers have always been integral to hospice and palliative care. However, their roles have been left relatively undefined and broad. Aim This study aims to examine the role of hospice volunteers in German inpatient hospice and palliative care. The question we seek to answer is: What do hospice volunteers contribute to everyday life in inpatient hospice and palliative care units? Methods We undertook a multicenter, on-site qualitative interview study, utilizing problem-centered interviews with 16 volunteers from five inpatient hospice units and one hospital palliative care unit. Interviews were analyzed using grounded theory. Results Analysis of the interviews revealed three typical characteristics of how hospice volunteers’ describe their own role: (1) performing small acts of kindness, (2) creating a family-like atmosphere, (3) expecting emotional experiences. A common theme across all categories is the emphasis on spontaneous actions and personal experiences. The process of dying becomes an experience interpreted by volunteers as enriching, as a gift, as a “teacher”. Conclusion Granting hospice volunteers freedom to act spontaneously and intuitively benefits hospice and palliative care delivery. Organizations should leave sufficient room for spontaneity in order to involve volunteers effectively. Open and unstandardized roles facilitate dynamic work practices.

Abstract Background Cultural factors influence attitudes toward death, and gender disparities are evident. Prior studies show that medical students have limited knowledge about death and are uncomfortable with it. Moreover, there is limited research that has examined factors that influence medical students’ knowledge and attitudes toward death. Objectives The objectives of the study were to compare cultural and gender differences in relation to knowledge and attitudes toward loss and grief and to screen for complicated grief among medical students at the Arabian Gulf University and the University of Toronto. Methods A cross-sectional study was disseminated to medical students at both universities in 2022. The variables in the survey included four parts: demographic characteristics of the participants, religious observance, history of encountering loss of a loved one, grief following loss, attitude toward death, and learning about how to deal with grief and death during medical school. The brief grief questionnaire and the death attitude profile-revised scales were used. Results The study sample consisted of 168 medical students, with 74.1% being female. Complicated grief scores were higher among Arabian Gulf University students (3.87 ± 2.39) than among University of Toronto students (2.00 ± 1.93) and were higher for participants with a higher degree of religious observance in both schools (p

Objective: To help healthcare professionals (HCP) act with more confidence when communicating about approaching death, we sought to develop a communication model for HCP to facilitate conversations with dying patients and family caregivers (FC) in nonemergency situations. Methods: We used a four-phase integrative approach: (1) creation of a preliminary model based on a systematic literature review and expert knowledge, (2) review of the model draft by international palliative care experts, (3) review by key stakeholders, and (4) final appraisal by communication experts. Results: After the clinical recognition of dying, the communication model provides a structure and practical communication aids for navigating the conversation based on three phases. It describes the content and relational level as core dimensions of effective conversations about approaching death and highlights the importance of HCP self-awareness and self-care when caring for the dying. Conclusion: Based on systematic involvement of key stakeholders, the model supports clinicians navigating challenging conversations about approaching death with dying patients and their FC successfully and with more confidence. Innovation: This study expands the theoretical basis for communication about approaching death and offers a pragmatic model for educational interventions and clinical use.

Objective: To systematically review research analyzing the effectiveness of decision aids for end-of-life care, including how researchers specifically measure decision aid success. Methods: We conducted a systematic review synthesizing quantitative, qualitative, and mixed-methods study results using Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Four databases were searched through February 18, 2023. Inclusion criteria required articles to evaluate end-of-life care decision aids. The review is registered under PROSPERO (#CRD42023408449). Results: A total of 715 articles were initially identified, with 43 meeting the inclusion criteria. Outcome measures identified included decisional conflict, less aggressive care desired, knowledge improvements, communication improvements, tool satisfaction, patient anxiety and well-being, and less aggressive care action completed. The majority of studies reported positive outcomes especially when the decision aid development included International Patient Decision Aid Standards. Conclusion: Research examining end of life care decision aid use consistently reports positive outcomes. Innovation: This review presents data that can guide the next generation of decision aids for end-of-life care, namely using the International Patient Decision Aid Standards in developing tools and showing which tools are effective for helping to prevent the unnecessary suffering that can result when patients' dying preferences are unknown.

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

Summary: This article examines the many occurrences of dying and death in the Acts of the Apostles. While Acts often refers to the death and resurrection of Jesus, it also speaks of the resurrection of the dead in general, of death as a form of divine judgement, of the prospect of death and the actual deaths of persons who believe in Christ, and other forms and instances of natural and violent dying and death. While there are instances of death and references to it in many chapters, the emphasis in Acts lies on different divine and human ways of being saved from death or its threat, and on the resurrection of the dead. Fully acknowledging the reality and tragedy of death, Acts nonetheless proclaims a message of life and salvation. [ABSTRACT FROM AUTHOR]

This qualitative study examines the barriers for social workers to perform tasks in Flemish palliative care and recommendations to overcome them in practice. It consists of two phases: a focus group phase with social workers from Flemish nursing homes, hospitals, health insurance and home care services and an expert panel phase with representatives from relevant care services and civil society organisations in Flanders. Data were analysed according to the Framework Method. Twenty-four social workers and twelve experts participated in this study. Three main barriers were identified along with two or three types of recommendations to overcome them in practice. A three-level strategy can be proposed to improve social workers' ability to perform tasks in palliative care. First, at a micro level, social workers' competencies for palliative care practice should be further increased. Second, at a meso level, the social work role in palliative care should be clarified by social workers themselves or by employers. Third, at a macro level, overarching care practices and policies facilitating the timely and structural integration of social workers should be implemented. Furthermore, this strategy will require the involvement of multiple actors, that is, social workers, education managers, care managers and policy makers. [ABSTRACT FROM AUTHOR]

Background: Volunteers have always been integral to hospice and palliative care. However, their roles have been left relatively undefined and broad. Aim: This study aims to examine the role of hospice volunteers in German inpatient hospice and palliative care. The question we seek to answer is: What do hospice volunteers contribute to everyday life in inpatient hospice and palliative care units? Methods: We undertook a multicenter, on-site qualitative interview study, utilizing problem-centered interviews with 16 volunteers from five inpatient hospice units and one hospital palliative care unit. Interviews were analyzed using grounded theory. Results: Analysis of the interviews revealed three typical characteristics of how hospice volunteers' describe their own role: (1) performing small acts of kindness, (2) creating a family-like atmosphere, (3) expecting emotional experiences. A common theme across all categories is the emphasis on spontaneous actions and personal experiences. The process of dying becomes an experience interpreted by volunteers as enriching, as a gift, as a "teacher". Conclusion: Granting hospice volunteers freedom to act spontaneously and intuitively benefits hospice and palliative care delivery. Organizations should leave sufficient room for spontaneity in order to involve volunteers effectively. Open and unstandardized roles facilitate dynamic work practices. [ABSTRACT FROM AUTHOR]

Background Cultural factors influence attitudes toward death, and gender disparities are evident. Prior studies show that medical students have limited knowledge about death and are uncomfortable with it. Moreover, there is limited research that has examined factors that influence medical students’ knowledge and attitudes toward death. Objectives The objectives of the study were to compare cultural and gender differences in relation to knowledge and attitudes toward loss and grief and to screen for complicated grief among medical students at the Arabian Gulf University and the University of Toronto. Methods A cross-sectional study was disseminated to medical students at both universities in 2022. The variables in the survey included four parts: demographic characteristics of the participants, religious observance, history of encountering loss of a loved one, grief following loss, attitude toward death, and learning about how to deal with grief and death during medical school. The brief grief questionnaire and the death attitude profile-revised scales were used. Results The study sample consisted of 168 medical students, with 74.1% being female. Complicated grief scores were higher among Arabian Gulf University students (3.87±2.39) than among University of Toronto students (2.00±1.93) and were higher for participants with a higher degree of religious observance in both schools (p<0.05). Death avoidance (p=0.003), approach acceptance (p<0.001), and escape acceptance (p=0.038) domains were significantly higher among Arabian Gulf University students than among University of Toronto students. Almost threequarters of University of Toronto students reported not being taught about grief, compared to 54% of Arabian Gulf University students. Conclusions Arabian Gulf University medical students scored higher on complicated grief, most likely due to cultural and religious factors. Females at both institutions as well as those who indicated a higher level of religious observance reported higher scores of complicated grief. The study highlights how cultural and religious beliefs influence medical students’ attitudes toward death and bereavement. It provides valuable insight into the knowledge and attitudes of medical students toward loss. [ABSTRACT FROM AUTHOR]

This study examined nurses' attitudes towards death, anxiety levels, and socio-demographic characteristics affecting their attitudes towards death. Three hundred and eighty-four nurses participated in the study. A questionnaire form, the Death Attitude Profile-Revised (DAP-R), and the Penn State Worry Questionnaire were applied to the nurses. Nurses' attitudes towards death were positive and their level of fear of death was low. Approach acceptance was high in younger ones; the escape acceptance score was higher in single ones. The neutral acceptance score was higher in those who received training on death. A statistically significant positive correlation was found between nurses' anxiety level and escape acceptance score. There was a statistically significant positive correlation between the length of working years of nurses and the escape acceptance and approach acceptance. Nurses should be prepared for and supported on death with in-service training. It will be useful to provide these training programs to nursing students during their education process. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are often left out of research on important topics. This exploratory study investigated their views on barriers and facilitators to accessing care at end of life, both at home and in a hospice setting. Method: This qualitative study used reflexive thematic analysis. Two focus groups were held via Zoom with a total of four participants. Results: Three themes were produced: Unsettling Transitions, Maintaining Familiarity, and Respecting People's Wishes. Keeping things as unchanged as possible at end of life was highlighted as an ideal. Respecting people's wishes and education were highlighted as facilitators to good end of life care. Conclusions: The themes identified in this study highlight the fears and wishes of this population with regards to receiving quality end of life care. Training for staff and families, as well as advanced care planning, could focus on enhancing facilitators and decreasing barriers for this population. [ABSTRACT FROM AUTHOR]

A qualitative study was undertaken to identify what triggers grief in the first two years following the death of a beloved family member, determine how often triggered grief occurs, and gain lived insight into what can be done (if anything) to manage triggers and also triggered grief. Four themes highlighting an uncertain process associated with grief triggers were identified: (a) my whole life was grief, (b) frequently hit by "hard-grief" triggers, (c) reaching a balance with grief and grief triggers to absorb the losses and reshape life, and (d) shifting to good and welcome memories, triggers that keep the person alive. These themes are described, with quotes illustrating their relevance for advising bereaved people about the grief triggers they may encounter. This evidence adds to a limited body of evidence on grief triggers and offers new insights for developments in grief theory and bereavement programs or services. [ABSTRACT FROM AUTHOR]

Objective Parents of children who died of a medical condition experience a range of psychosocial outcomes. The current scoping review aims to summarize the outcomes assessed, methodology, and sample characteristics of recent psychosocial research conducted with this population. Methods Included studies were limited to peer-reviewed, psychosocial outcomes research published between August 2011 and August 2022, written in English, and including caregiver study participants of children who died of a medical condition. Data sources were scholarly journal articles from 9 electronic databases, including Scopus , Web of Science , Academic Search Primer , ProQuest Research Library , PubMed , Embase , PsycINFO , Psychology & Behavioral Sciences Collection , and Health Source: Nursing/Academic Edition. The Mixed Methods Appraisal Tool-2018 evaluated methodological quality. Results The study sample included 106 studies, most of which were either qualitative (60%) or quantitative (29%). Mixed-methods studies (8%) and randomized clinical trials (2%) were also identified. Study quality was variable, but most studies met all quality criteria (73%). Studies primarily represented cancer populations (58%), White participants (71%), and mothers (66%). Risk-based psychosocial outcomes (e.g. grief) were more commonly assessed than resilience-based outcomes. Conclusions The current scoping review revealed that recent research assessing the psychosocial outcomes of bereaved parents is limited in the representation of diverse populations, primarily qualitative, of broadly strong methodological quality, and oriented to psychosocial risk. To enhance the state of the science and inform evidence-based psychosocial services, future research should consider varied methodologies to comprehensively assess processes of risk and resilience with demographically and medically diverse populations. [ABSTRACT FROM AUTHOR]

This study's purpose was to explore how palliative care nurses' views on death and time perspectives are related to their terminal care attitudes. A questionnaire survey—consisting of the Death Attitude Inventory, Experiential Time Perspective Scale, and the Japanese version of the Frommelt Attitudes Toward Care of the Dying Scale—was administered to 300 individuals. Cluster analysis was conducted to categorize the way nurses perceive death, which revealed four types: Avoidant, middle, accepting, and indifferent. As a result of the analysis of variance on the terminal care attitudes, based on the types of views on death and time attitudes, it was found that the middle and accepting types, as well as the adaptive formation of time attitudes, were related to positive terminal care attitudes. In conclusion, more effective improvements in attitudes toward terminal care can be expected by incorporating time perspective, in addition to the conventional approaches focusing on death. [ABSTRACT FROM AUTHOR]

Background: It is commonly thought that most deaths in developed countries take place in hospital. Death place is a palliative care quality indicator. Objectives: To determine the use of Canadian hospitals by patients who died in hospital during the 2019–2020 year and any additional hospital utilization occurring over their last 365 days of life. Design: An investigation of population-based (2018–2020) Canadian hospital data using SAS. Settings/Subjects: All patients admitted to hospital and discharged alive or deceased. Measurements: Describe patients who died in hospital, and any additional use of hospitals by these patients over their last year of life. Results: Ninety-one thousand six hundred forty inpatients died during 2019–2020; 4.85% of all 1.88 million hospitalized individuals and 41.82% of all deaths in Canada that year. Decedents were primarily 65+ years of age (81.16%), male (53.44%), admitted through an emergency department (80.16%), and arrived by ambulance (72.15%). The most common diagnosis was the nonspecific ICD-10 defined "factors influencing health status and contact with health services" (23.75%), followed by "circulatory diseases" (18.22%), "respiratory diseases" (15.58%), and many other less common diagnoses. The average length of final hospital stay was 16.54 days, with 89.97% having some Alternative Level of Care (ALC) or ALC days recorded, indicating another care setting was preferable. Only 5.78% had cardiopulmonary resuscitation performed during their final hospitalization. Of all 91,640 decedents, 74.33% had only one admission to hospital in their last 365 days of life, while 25.67% (more often younger than older decedents) had two to five admissions. Conclusions: This study confirms a continuing shift of death and dying out of hospital in Canada. Most deaths and end-of-life care preceding death take place outside of hospitals now. Enhanced community-based services are recommended to support optimal dying processes outside of hospitals and also help more dying people avoid hospital deaths. [ABSTRACT FROM AUTHOR]

In the post COVID-19 pandemic period, targeted efforts are needed more than ever to improve frontline nurses' well-being. In the field of palliative care, there is recognition of the importance of self-care, but the concept itself remains nebulous, and proactive implementation of self-care is lacking. Reflective writing has been noted to have positive impacts on health care providers' well-being. This piece brings to light the author's interest and work in reflective writing, sharing a personal account that provides a source of happiness and an opportunity to better understand her palliative care practice. Beyond the individual level, organizations are also encouraged to invest in their nurses' overall well-being. [ABSTRACT FROM AUTHOR]

Background: Last Aid Courses (LAC) for adults have been established in 21 countries in Europe, Australia and America to improve the public discussion about death and dying and to empower people to participate in end-of-life care provision. In 2018, the first Last Aid Courses for kids and teens (LAC-KT) were introduced. The aim of the study was to explore the views and experiences of the course participants and Last Aid Course instructors on the LAC-KT. Methods: A mixed-methods approach was used. The views of the LAC-KT participants, aged 7 to 17 years, on the LAC-KT were collected using a questionnaire. In addition, the experiences of the Last Aid Course instructors were explored in focus group interviews. Results: The results show that 84% of the participants had experiences with death and dying and 91% found the LAC-KT helpful for everyone. The majority of the participants appreciate the opportunity to talk and learn about death, dying, grief and palliative care. Conclusions: The LAC-KT is feasible, very well accepted and a welcome opportunity for exchanging and obtaining information about dying, grief and palliative care. The findings of the study indicate that the LAC-KT should be offered to all interested children and teenagers and included in the school curriculum. [ABSTRACT FROM AUTHOR]

Background Care home residents often lack access to end-of-life care from specialist palliative care providers. Palliative Care Needs Rounds, developed and tested in Australia, is a novel approach to addressing this. Objective To co-design and implement a scalable UK model of Needs Rounds. Design A pragmatic implementation study using the integrated Promoting Action on Research Implementation in Health Services framework. Setting Implementation was conducted in six case study sites (England, n = 4, and Scotland, n = 2) encompassing specialist palliative care service working with three to six care homes each. Participants Phase 1: interviews (n = 28 care home staff, specialist palliative care staff, relatives, primary care, acute care and allied health practitioners) and four workshops (n = 43 care home staff, clinicians and managers from specialist palliative care teams and patient and public involvement and engagement representatives). Phase 2: interviews (n = 58 care home and specialist palliative care staff); family questionnaire (n = 13 relatives); staff questionnaire (n = 171 care home staff); quality of death/dying questionnaire (n = 81); patient and public involvement and engagement evaluation interviews (n = 11); fidelity assessment (n = 14 Needs Rounds recordings). Interventions (1) Monthly hour-long discussions of residents’ physical, psychosocial and spiritual needs, alongside case-based learning, (2) clinical work and (3) relative/multidisciplinary team meetings. Main outcome measures A programme theory describing what works for whom under what circumstances with UK Needs Rounds. Secondary outcomes focus on health service use and cost effectiveness, quality of death and dying, care home staff confidence and capability, and the use of patient and public involvement and engagement. Data sources Semistructured interviews and workshops with key stakeholders from the six sites; capability of adopting a palliative approach, quality of death and dying index, and Canadian Health Care Evaluation Project Lite questionnaires; recordings of Needs Rounds; care home data on resident demographics/health service use; assessments and interventions triggered by Needs Rounds; semistructured interviews with academic and patient and public involvement and engagement members. Results The programme theory: while care home staff experience workforce challenges such as high turnover, variable skills and confidence, Needs Rounds can provide care home and specialist palliative care staff the opportunity to collaborate during a protected time, to plan for residents’ last months of life. Needs Rounds build care home staff confidence and can strengthen relationships and trust, while harnessing services’ complementary expertise. Needs Rounds strengthen understandings of dying, symptom management, advance/anticipatory care planning and communication. This can improve resident care, enabling residents to be cared for and die in their preferred place, and may benefit relatives by increasing their confidence in care quality. Limitations COVID-19 restricted intervention and data collection. Due to an insufficient sample size, it was not possible to conduct a cost–benefit analysis of Needs Rounds or calculate the treatment effect or family perceptions of care. Conclusions Our work suggests that Needs Rounds can improve the quality of life and death for care home residents, by enhancing staff skills and confidence, including symptom management, communications with general practitioners and relatives, and strengthen relationships between care home and specialist palliative care staff. Future work Conduct analysis of costs–benefits and treatment effects. Engagement with commissioners and policy-makers could examine integration of Needs Rounds into care homes and primary care across the UK to ensure equitable access to specialist care. Study registration This study is registered as ISRCTN15863801. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128799) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 19. See the NIHR Funding and Awards website for further award information. Plain language summary Care home residents often lack access to end-of-life care from hospice teams and so may experience distressing symptoms at end of life if care home staff cannot fully meet their needs. We examined how an approach which worked well in Australia called ‘Palliative Care Needs Rounds’ (or ‘Needs Rounds’) could be used in the United Kingdom. We interviewed 28 people (care home staff, hospice staff and other National Health Service/social care professionals in the community) about their understanding of the United Kingdom setting, what might help trigger change and what results they would want. We discussed these interviews at online workshops with 43 people, where we started to develop a theory of ‘what would work, for whom, under what circumstances’ and determine what United Kingdom Needs Rounds would look like. Six specialist palliative care services, each partnered with three to six local care homes, used Needs Rounds for a year. We collected information on care home residents, staff experiences of using Needs Rounds, relatives’ perceptions of care quality, staff views of residents’ quality of death, and on their ability to provide a palliative approach to residents. We found that Needs Rounds can provide care home staff and specialist palliative care staff the opportunity to work together during a protected time, to plan for residents’ last months of life. Needs Rounds build care home staff confidence and can strengthen relationships and trust, while using each services’ expertise. Needs Rounds strengthen understandings of dying, symptom management, advance/anticipatory care planning and communication between care home staff, families, specialist palliative care staff and primary care. This improves the quality of resident care, enabling residents to be cared for and die in their preferred place, and also benefits relatives by increasing their confidence in care quality. Scientific summary Background Despite high levels of morbidity and mortality, care home (CH) residents do not always have adequate access to specialist palliative care (SPC). Residents can experience uncontrolled symptoms, poor-quality deaths and futile/burdensome hospitalisations. CH staff can feel unprepared and unsupported to look after residents at end of life. Although models exist for improving end-of-life care in CHs, these are primarily focused on education and do not adequately triage residents to focus on those most at risk of dying without a plan in place and rarely integrate clinical care. A clinical innovation in Australia called ‘Palliative Care Needs Rounds’ (hereafter ‘Needs Rounds’) combines triaging, with anticipatory person-centred planning, case-based learning and case conferencing. The approach has been synthesised into a checklist to provide guidance to clinicians running Needs Rounds. In Australia, Needs Rounds reduced length of stay in hospital and number of admissions, increased dying in preferred place, improved symptoms at end of life and normalised death/dying to CH staff. CH staff felt more confident looking after the residents. Preventing hospital admissions saved AUD$1.7 million over a year (nearly £1 million). Aim To co-design and implement a scalable UK model of Needs Rounds, which takes account of the different policy/practice context in the UK. Objectives The implementation objectives were to: co-design a UK version of Needs Rounds, which is responsive to different contextual characteristics of the UK CH sector (Phase 1) implement the adapted model of care, assess feasibility, acceptability and effectiveness and ultimately propose how the model of care can be further refined and adopted in the UK context, to reap the benefits demonstrated in the Australian work (Phase 2). The intervention objectives were to: determine the transferability of the core elements of the Australian Needs Rounds intervention in the UK context (Phase 1 and 2) delineate the mechanisms of action that enable more effective palliative and end-of-life care practices to be applied in UK CHs (Phase 2) identify the relationships between (1) the mechanisms of action embedded in Needs Rounds, (2) how these mechanisms function in different CH contexts and (3) the outcomes arising for different stakeholders and parts of the care system (Phase 2). The process evaluation objectives were to: document the outcomes of UK Needs Rounds on hospitalisations (including costs), quality of death/dying and CH staff capability (Phase 2) assess and report the perspectives of CH residents, relatives, CH staff and palliative care staff on using UK Needs Rounds (Phase 2). Methods A pragmatic critical-realist implementation study using the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework. We determined what works, for whom and in what circumstances for the UK Needs Rounds model. Implementation was conducted in six case studies, where a case is defined as a SPC service working with three to six CHs each. Phase 1: development of an initial programme theory Inclusion criteria: SPC or CH staff in one of the six sites; residents or relatives of someone residing in one of the CHs; worked in a role supporting CHs (acute care, the ambulance service or primary care); and had capacity to consent. Participants and methods: stakeholder interviews (n = 28) across the six cases were used to develop an initial programme theory. Subsequently, we ran four online workshops to co-design UK Needs Rounds with key stakeholders (n = 43). Analysis: Inductive thematic analysis was applied to the interview data, using NVivo for coding. Integrated Promoting Action on Research Implementation in Health Services informed subsequent deductive analysis, categorising the data into contexts, mechanisms, outcomes and innovation components. Chains of inference were identified, and context, mechanism, outcome configurations generated. Outputs: Five theories and an initial programme theory to be tested during implementation. Phase 2: implementing, adapting and evaluating United Kingdom Needs Rounds in the six case study sites Inclusion criteria: interviews – SPC clinicians or a CH staff member in one of the sites; research team member for patient and public involvement and engagement (PPIE) evaluation. Capability to adopt a palliative approach (CAPA) – CH staff members in one of the six sites; Quality of Death and Dying Index (QODDI) for all CH-deceased residents; CANHELP Lite – relatives of someone discussed at Needs Rounds. Participants and data: interviews, n = 58 CH and SPC staff; PPIE evaluation, n = 11; CANHELP Lite questionnaire, n = 13 relatives; CAPA, n = 171 CH staff; QODDI, n = 81 CH staff; fidelity, n = 14 Needs Rounds recordings. Interviewees in Phase 2 had not been interviewed in Phase 1, but participating hospices had staff involved in both Phase 1 and Phase 2 interviews. Analysis: Qualitative data were analysed inductively using thematic analysis and coded using NVivo and organised in line with the five theories derived from Phase 1. Deductive and retroductive analysis were used to formulate the data into context, mechanism, outcomes and identify causal forces of generative causation. Data sources were triangulated in analysis to aid development of the theory. Chains of inference and connectors between and within the initial theories were subsequently refined and integrated to produce the final programme theory of implementation for the UK context. Capability of adopting a palliative approach (CAPA) was analysed using generalised least squares random-effects models with robust standard errors; regressions were conducted for overall CAPA scores and for each individual CAPA item, and a paired t-test was conducted using the subset of CH staff members with multiple responses. The QODDI analysis was conducted using QODDI10, a subset of the QODDI questionnaire, which included 10 items. Due to large numbers of missing data, QODDI10 was selected to preserve the largest proportion of the sample with complete responses (92.6%). Family perceptions of care analysis used descriptive statistics for the family perceptions (CANHELP Lite) survey due to the small sample size. Fidelity was assessed through a random sample of 20% of all audio-recorded Needs Rounds to determine adherence to the agreed approach developed in the workshop. A three-tier scoring system, of 1 (high adherence), 2 (moderate) and 3 (low), was adopted. Estimating the treatment effect on health service outcomes was conducted using descriptive statistics for number of hospital admissions and number of hospital bed-days. Estimating the cost effectiveness (cost–benefit analysis) was not possible due to insufficient data. Qualitative interview data were used to describe costs associated with Needs Rounds. Outputs: A programme theory of what works for whom under what circumstances with Needs Rounds in the UK, an implementation translation package, and policy briefing. Patient and public involvement: three lay people were coinvestigators and contributed to protocol development, ethics paperwork, topic guides for Phase 1 and 2 interviews, content development and participation/co-facilitation at the coproduction workshops, data analysis and dissemination outputs including newsletters, blogs, Twitter, journal articles, conference abstracts and this funder report. Training and support were provided to PPIE members. Results Phase 1: five theories were generated focusing on (1) Confidence and competence, (2) reducing hospitalisations, (3) interagency working and collaboration, (4) better-quality lives and deaths and (5) supporting families. These were integrated to produce one initial overarching initial programme theory to be tested during implementation. Phase 2: primary outcome Needs Rounds resulted in increased CH staff confidence and competence to support residents in their last months of life. Sector-wide workforce issues and associated impacts on time and resources, however, shaped the scale of change, with CHs often being limited in the number and type of staff members being able to attend. Improved relationships were forged between CH and SPC staff. The facilitation approach was a key mechanism for this and was based on developing collaborative, reciprocal relationships where complementary expertise was harnessed. Increased confidence improved communications between CH staff and general practitioners (GPs). Better-quality death and dying resulted from proactive discussions and action plans regarding residents’ physical, psychosocial and spiritual needs. CH staff reported that families felt more informed and secure in the care their relatives received. Fidelity to the coproduced UK model of Needs Rounds was variable. An assessment of a random selection identified that many sites achieved low scores despite qualitative interviews providing evidence of managing to achieve important outcomes. Facilitation approaches were collaborative and involved gentle work in determining people’s current knowledge and areas for extending insights as well as which residents were appropriate to discuss. Managers were key facilitators in enabling staff to attend Needs Rounds, through rotas or paid overtime. The programme theory of what works for whom under what circumstances is as follows: While care homes experience workforce challenges, like high turnover and recruitment difficulties, exacerbated by poor pay and conditions, staff have variable skills and confidence and sometimes having insufficient support within the wider healthcare system. Needs Rounds can provide care home staff and specialist palliative care staff with the opportunity to collaborate during a protected time, to plan for residents’ last months and weeks of life. Flexibly arranging Needs Rounds to suit care home needs, having manager buy-in and building collaborative relationships can help to encourage time to be protected. Needs Rounds augment existing practice by building care home staff confidence for those who attend and prompting anticipatory planning and care. A facilitation approach that is responsive to the difficult context in which care homes operate can improve collaboration. Needs Rounds can strengthen relationships and trust and shift power dynamics between care home and hospice services by harnessing complementary expertise. Integrating learning into Needs Rounds strengthens understandings of the dying process, symptom and pain management, advance/anticipatory care planning, and communication mechanisms between care home staff, families, specialist palliative care staff and primary care. This leads to high-quality resident-centred care, enabling residents to be cared for and die in their preferred place. Needs Rounds also benefit relatives by increasing their confidence in care quality and care home staff, by providing timely expert input. Secondary outcomes Capability of adopting a palliative approach: Questionnaires were returned by 171 CH staff members. Questionnaires completed later in the study achieved higher CAPA scores, indicating that CH staff increased their confidence as Needs Rounds progressed. Staff in not-for-profit homes had higher scores than those in private CHs; care staff and other staff had lower capability scores than managerial staff. Working in a larger CH (50 + beds) compared to a medium CH (11–49 beds) was associated with lower CAPA scores. CANHELP Lite: Thirteen surveys were completed. Family members were largely satisfied with the care provided to their relatives and least satisfied with care provided by doctors. Estimating the treatment effect and cost effectiveness: There was an increase in CH bed-days in hospital (from 1.6/1000 to 2.2/1000) and nights in hospital (from 9.9/1000 to 14.9) from baseline to follow-up. The small sample size (n = 5) and confounding nature of COVID-19 meant it was not possible to test for statistical significance. These factors also meant it was not possible to compute the cost effectiveness of Needs Rounds. Qualitative data indicate several costs including the opportunity costs of CH staff time spent in Needs Rounds meetings, travel costs for SPC staff and medicine costs. Patient and public involvement and engagement: PPIE members were fully integrated into the team. They were meaningfully involved from the outset and made key contributions to the study. Relationship building was a core mechanism that made the PPIE members feel valued; this was facilitated through regular communications and monthly debriefs for support and a relationship dynamic based on equality and mutuality. Many of the academic team members also had lived experience of supporting relatives in CHs and/or receiving palliative and end-of-life care. This enriched the team dynamic without invalidating the contributions of the PPIE members. Care home participation: Low data returns were observed for all quantitative measures. A range of factors impacted CH staff ability and desire to return data to the research team. Conducting complex data collection while CHs were in intermittent lockdowns, experiencing extreme staffing shortages, and being asked to complete bespoke tools all acted as barriers to high levels of data collection. Limitations Key contextual factors impacted implementation of Needs Rounds and data collection. Needs Rounds delivery took place during 2021–2 when COVID-19 lockdowns continued to occur both locally and nationally, which significantly impaired implementation. This resulted in core parts of the intervention not working, namely the case conferences with family members and multidisciplinary team meetings. COVID-19 also reduced the amount of data returned for analysis; the resulting small sample sizes limited the power of claims we can draw from the data. Conclusions Needs Rounds improve palliative and end-of-life care for CH residents by enhancing staff skills and confidence, communication between CH staff and GPs and relationships with SPC clinicians. Needs Rounds result in more proactive support for residents and communications with families. These findings complement the robust evidence base on Needs Rounds in Australia. The facilitation approach was central to implementation. Needs Rounds worked well when SPC clinicians and CH staff adopted a collaborative, partnership approach and recognised and used complementary expertise to improve the quality of lives and deaths of residents. Implications for health care Future work should focus on the sustainability of Needs Rounds to ensure equitable access to SPC for CH residents, engaging with commissioners and policy-makers to secure funding to integrate and embed Needs Rounds into CHs across the UK. Increased CAPA scores demonstrate that Needs Rounds improve competence as the intervention progresses. CH managers should ensure that care staff are able to attend Needs Rounds to benefit from the intervention; larger CHs should include a range of staff to improve staff confidence and competence across the workforce. Recommendations for future research Enhancing the UK evidence for Needs Rounds would involve calculating the cost–benefit analysis and treatment effect. Future research could examine how Needs Rounds run alongside primary care. Semistructured interviews exploring families’ and residents’ perspectives of UK Needs Rounds would provide a fully rounded account of the impact of the approach to care, which was not possible given the limitations of COVID-19 during this study. A follow-up study evaluating how much knowledge and learning is retained and applied by those attending Needs Rounds would provide evidence regarding the long-term impact on staff, including staff moving to different CH providers. Study registration This study is registered as ISRCTN15863801. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128799) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 19. See the NIHR Funding and Awards website for further award information.

This article concerns the situations experienced by the researcher in one of the sensitive research groups—hospice patients. The article is based on the author’s experiences in three studies in Poland—94 in-depth interviews and observations in inpatient and home care hospices. Through the seven presented categories the author faced during the interviews, she analyzes the dilemmas of conducting qualitative research from a practical perspective. During studies, we learn about our preferences, sometimes defining ourselves on one of the sides—becoming a quantitative or qualitative researcher, thus deciding further scientific paths. Conducting qualitative research requires specific activities, including knowledge of the literature, selection of the proper method, and analysis of the research group (Silverman 2012). These principles turn out to be only the beginning of the process in which we intuitively, through trial and error, pave the way to deal with demanding situations, previously inexperienced emotions, coordination, and technical and ethical problems. Some studies require special preparation, particularly considering the specificity of certain research groups, such as hospice patients, who will face the dying process soon.