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Emotional and existential suffering is prevalent in advanced diseases and psychologists have valuable skills to support people in this time of life. Yet, psychologists are rarely integrated in palliative care and relevant training is sparse. Being integrated in other areas of health, it is likely that we will be supporting these patients, whether integrated in a specialized team or not. This article is meant to serve psychologists, already skilled in the art and science of psychosocial intervention, who may find themselves supporting patients with advanced disease. Relevant history of palliative care is provided to elucidate palliative philosophy and approach. Evidence-based existential interventions will be reviewed. Integration of psychological models and both palliative theory and practice is provided to support palliative-appropriate case conceptualizations. Finally, case examples are provided throughout to help readers reconcile their existing practice in this domain of care. [ABSTRACT FROM AUTHOR]

Aims: This commentary uses the Tasmanian Palliative and End of Life Care Policy Framework (2022; the TPE Framework) to reflect upon palliative care services delivered by a rural Tasmanian general practice. Context: Rural populations have challenges in accessing many healthcare services, including palliative care. General practitioners (GPs) and other primary healthcare workers are frequently relied upon to deliver palliative care in rural Australia. Palliative care is often needed before the end‐of‐life phase and patients prefer this to be delivered in the community or at home. GPs face challenges and barriers in continuing to deliver home‐based palliative care services. Approach: All Medical Benefit Scheme billings for after‐hours or home‐based palliative care provided by the practice, between September 2021 and August 2022, were identified and patient demographic and clinical details collated. To further understand this data, nine GPs were surveyed to explore their attitudes to provision of palliative care service to the local rural communities they serve. These data highlighted several priority areas of the TPE Framework. The TPE Framework is used here to add to the shared understanding of palliative care service delivery in a rural community, and to see if GP's responses align with the priorities of the TPE Framework. Of the 258 after‐hours and home‐visits delivered over a 12‐month period, almost 58% (n = 150) were for palliative care. Patients receiving palliative care were generally older than non‐palliative patients visited (79.9 years vs. 72.0 years respectively; p = 0.004). Patients not at imminent risk of death (64.0%) were more frequently recipients of home‐visits. Of the nine GPs responding to the survey, most intended to continue home visits for palliative patients. Disincentives to providing palliative care during home visits included a lack of time during the day (or after hours), low levels of interdisciplinary coordination or role‐definition, and inadequate remuneration. Conclusion: Existing frameworks can be used as an implementation and evaluation guide to help understand local palliative care services. Using a Framework, a rural general practice in Tasmania reflected on their provision of palliative care services. Providing holistic palliative care services from a rural general practice is desirable and achievable with a coordinated, team‐based approach. Access to and integration with specialist services remains a key component of community‐based palliative care pathways. [ABSTRACT FROM AUTHOR]

Objectives: To explore the experiences, acceptability and utility of a decision aid for family carers of people with dementia towards the end of life. Methods: We conducted semi‐structured interviews with a sample of family carers enroled into a 6‐month feasibility study in England, sampling to gain a range of experiences and views, based on relationship to person they cared for (e.g., spouse, adult child), age, gender, and self‐reported use of the decision aid during the feasibility study. Interviews were conducted in March 2021–July 2021 and analysed using reflexive thematic analysis. We used COREQ checklist to report our methods and results. Results: Family carers found the decision aid acceptable, describing it as comprehensive, accessible with relevant information and its presentation enabled good engagement. Experiences of the decision aid covered four main themes which demonstrated the perceived acceptability and utility: 1. A source of support and reassurance; 2. Empowering conversations and confidence; 3. Including the person living with dementia; and 4. Breaking down complexity. Conclusions: An aid focussing on decisions about dementia end of life care supported family carers break down complex and emotive decisions, not only with making decisions in the moment but also in future planning. Patient or Public Contribution: Our three Patient and Public Involvement (PPI) members (all former family carers) were crucial throughout the wider study. PPI supported development of the topic guides, supported trialling the topic guide and interview procedures and finally supported the development of themes as part of the analysis. [ABSTRACT FROM AUTHOR]

Despite growth in numbers of organizational antimicrobial stewardship programs, antimicrobial resistance continues to escalate. Interprofessional education and collaboration are needed to make these programs appropriately responsive to the ethically and clinically complex needs of patients at the end of life whose care plans still require antimicrobial management. [ABSTRACT FROM AUTHOR]

Although antimicrobial medications are commonly prescribed to patients at the end of life (EOL), clinicians might not discuss the benefits and harms of antimicrobials with their patients in the advance care planning process. This commentary on a case discusses challenges and strategies in antimicrobial decision making for patients at the EOL. As antimicrobial use can harm some patients, and as antimicrobial resistance remains an urgent public health issue, this article advocates for ethical reasoning to guide antimicrobial decision making for patients at the EOL. [ABSTRACT FROM AUTHOR]

Background and Objectives Individuals with dementia may require a surrogate decision maker as their disease progresses. To prepare for this potential role, dementia care partners need to develop a thorough understanding of their care recipient's end-of-life values and preferences, or care dyad advance care planning (ACP) concordance. As part of our pilot study implementing the LEAD intervention with dementia care dyads, we conducted a multimethod investigation to define care dyad ACP concordance. Research Design and Methods We conducted a scoping review of peer-reviewed studies published after 1991 in English focusing on care dyad ACP concordance in dementia care and included 34 articles. Concurrently, we used descriptive qualitative analysis to analyze 7 dyadic ACP conversations from a pilot study about dyadic dementia ACP. Results The scoping review demonstrated (a) no definition of care dyad ACP concordance was reported; (b) surrogate accuracy in end-of-life decisions varies widely; and (c) best practices for ACP in dementia may aid in achieving ACP concordance, but do not prioritize it as an outcome. Qualitative analysis identified 7 elements for achieving concordance: Respect/Regard; use of Clarifying Processes; Conveying Health Care Scenarios; Affirmation of Understanding; Recognizing Uncertainty; Expression of Positive Emotions; and Trust. Discussion and Implications Care dyad ACP concordance occurs when care recipients and care partners both understand a care recipient's end-of-life values, understand the end-of-life preferences informed by those values, and the care partner expresses a willingness to accomplish the care recipient's wishes to the best of their ability. ACP concordance can be further operationalized for research and clinical care. [ABSTRACT FROM AUTHOR]

Background and Objectives The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention. Research Design and Methods A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom. Results Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. Discussion and Implications There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time. [ABSTRACT FROM AUTHOR]

Moral distress has emerged as a significant concern for critical care nurses, particularly due to the complex and demanding care provided to critically ill patients in critical care units. The ongoing COVID-19 pandemic has introduced new ethical challenges and changes in clinical practice, further exacerbating the experience of moral distress among these nurses. This systematic review compares the factors influencing moral distress among critical care nurses before and during the COVID-19 pandemic to gain a comprehensive understanding of the impact of the pandemic on moral distress. For this systematic review, PubMed, Scopus, ProQuest, Web of Science, medRxiv, bioRxiv, Embase, and Google Scholar were all utilized in the search. The search covered articles published from 2012 to December 2022, encompassing a 10-year timeframe to capture relevant research on moral distress among critical care nurses. In total, 52 articles were included in this systematic review. The findings indicate that personal, caring-related, and organizational factors can influence nurses' moral distress. Before the pandemic, factors including futile and end-of-life care, conflicts with physicians, nurse performance and authority, poor teamwork, decision-making regarding treatment processes and patient care, limited human resources and equipment, medical errors, patient restraints, and nurses' age and work experience affect critical care nurses' moral distress. Similarly, during the COVID-19 pandemic, factors contributing to moral distress include futile and end-of-life care, fear of contracting and spreading COVID-19, decision-making about treatment processes, poor teamwork, and being female. This study revealed that the factors contributing to moral distress were approximately similar in both periods. Futile care and end-of-life issues were critical care nurses' primary causes of moral distress. Implementing prevention strategies and reducing these underlying factors could decrease this major issue and improve the quality of care. [ABSTRACT FROM AUTHOR]

Medical and technological advances have made it possible to keep people alive well beyond what was once possible, leading health care providers to focus on life-sustaining measures rather than questioning the futility of such measures and considering quality of life. In the midst of the struggle to foster dying well in a medicalized environment, acute care nurses may be challenged with shifting the focus to providing optimal end-of-life care because of lack of training, time, and resources. A remedy for the current western societal approach to medicalized dying is to look back in history to a time during the late Middle Ages, when death was an accepted part of medieval life. A literary genre called Ars Moriendi (translated "the art of dying") was written and illustrated to provide instruction on how to die well and how to care for the dying. Nurses can apply lessons from this text to fulfill the ethical obligation to practice with dignity and provide compassionate end-of-life care. These lessons include helping patients and families identify goals of care and accept finitude, encouraging the participation of loved ones at the bedside, and fostering reconciliation at the end of life. [ABSTRACT FROM AUTHOR]

Several challenges exist to providing effective, formalized end-of-life education for undergraduate nursing students. The purpose of this study was to determine whether the addition of a discourse intervention to the End-of-Life Nursing Education Consortium Undergraduate Nursing Modules effectively improved junior-level prelicensure bachelor of science in nursing students' knowledge and attitudes toward end-of-life care. This quasi-experimental 2-group comparison, pretest/posttest design consisted of a sample of 135 enrolled in a medical-surgical nursing class. Applying Mezirow's transformational learning theory, a 2-hour discourse intervention that included a self-reflective journal, an unfolding case study focused on loss, and a discussion with question-and-answer session was implemented at the completion of the Undergraduate Nursing Modules for the intervention group. Knowledge and attitude toward end-of-life care were measured before and after the intervention with the Palliative Care Quiz for Nurses and the Frommelt Attitude Toward Care of the Dying. The findings indicated increased knowledge and positive attitude changes. This study supports the value of theory-based educational interventions, like a discourse intervention, to enhance effective pedagogy when addressing emotionally laden content such as end-of-life care. This study may have also given a glimpse of how a global pandemic may affect end-of-life knowledge and attitudes. [ABSTRACT FROM AUTHOR]

Increasing numbers of individuals with complex, advanced illnesses are living longer and being cared for in the home by family members. As a result, family caregivers often experience physical, emotional, psychological, and social distress. A unique subset of this population are nurses who find themselves providing care in both their family lives and work lives, a phenomenon known as "double-duty caregiving." This study explored the experiences of nurses providing end-of-life care for family members while continuing to work as a nurse and the consequences of this experience. A qualitative design, using semistructured, in-depth interviews, was used to capture the double-duty caregivers' experiences. Four overarching themes were identified: It Takes a Village, Driving the Bus, Juggling Many Hats, and Moving Through and Looking Back. These themes captured the components of a support system that are essential for the double-duty caregiver to perform this work, the multifaceted expectations placed upon the double-duty caregiver, the double-duty caregiver's relentless need to balance multiple roles, and the immediate and long-term impact of double-duty caregiving. As nurses, we must acknowledge the need for self-care during this experience, and as a profession, we must provide support for the double-duty caregiver to preserve their personal and professional well-being. [ABSTRACT FROM AUTHOR]

As the population of older adults increases, there is an anticipated rise in the utilization of hospice and palliative care. Many significant advancements in technology have been used to address the unique needs of this demographic; however, an unexplored area of research is the use of robotic animals as part of end-of-life care. The purpose of this scoping review was to examine the state of the literature on robotic animal use among older adults enrolled in palliative or hospice care and to offer a framework for future research. Following a guide for scoping reviews, we identified relevant studies and then charted, collated, summarized, and reported the data. Two articles were selected for final review. The results found that decreased medication use, behavior change, and emotional benefits were potential outcomes of robotic animal use in hospice and palliative care. Perceptions of the robot and ethical considerations were also discussed. Overall, the study findings point toward the potential uses of robotic animals as part of end-of-life care, however, more empirical research is critically needed. [ABSTRACT FROM AUTHOR]

Introduction: Patients with cancer often want to spend their final days at home. In Norway, most patients with cancer die in institutions. We hypothesized that full integration of oncology and palliative care services would result in more time spent at home during end-of-life. Methods: A prospective non-randomized intervention trial was conducted in two rural regions of Mid-Norway. The hospitals' oncology and palliative care outpatient clinics and surrounding communities participated. An intervention including information, education, and a standardized care pathway was developed and implemented. Adult non-curative patients with cancer were eligible. Proportion of last 90 days of life spent at home was the primary outcome. Results: We included 129 patients in the intervention group (I) and 76 patients in the comparison group (C), of whom 82% of patients in I and 78% of patients in C died during follow-up. The mean proportion of last 90 days of life spent at home was 0.62 in I and 0.72 in C (p = 0.044), with 23% and 36% (p = 0.073), respectively, dying at home. A higher proportion died at home in both groups compared to pre-study level (12%). During the observation period the comparison region developed and implemented an alternative intervention to the study intervention, with the former more focused on end-of-life care. Conclusion: A higher proportion of patients with cancer died at home in both groups compared to pre-study level. Patients with cancer in I did not spend more time at home during end-of-life compared to those in C. The study intervention focused on the whole disease trajectory, while the alternative intervention was more directed towards end-of-life care. "Simpler" and more focused interventions on end-of-life care may be relevant for future studies on integration of palliative care into oncology. Trial Registration: ClinicalTrials.gov Identifier: NCT02170168. Plain Language Summary: Palliative care is an important part of cancer care to improve patients' quality of life. To be cared for and die in the preferred place are quality markers in palliative care. Patients with cancer often want to spend their final days at home. In Norway, most patients with cancer die in institutions. We hypothesized that full integration of cancer and palliative care would result in more time spent at home during end-of-life. An intervention that included information, education, and a standardized care pathway was developed and implemented in a region of Mid-Norway (the intervention region, I). A similar region served as comparison region (C). Adult patients with cancer treated with non-curative intent were eligible. Altogether, 129 patients in I and 76 patients in C were included in the study, of whom 82% in I and 78% in C died during follow-up. The mean proportion of time spent at home last 90 days of life was 0.62 in I and 0.72 in C (p = 0.044), and 22.6% and 35.6% (p = 0.073) died at home, respectively. A higher proportion died at home in both groups compared to pre-study national levels (12%). During the study period, C developed and implemented an alternative intervention to the study intervention, with the former placing more focus on end-of-life care compared to the she study intervention that focused on the whole disease trajectory. This may explain why the intervention did not result in more time spent at home during end-of-life as compared to C. "Simpler" interventions directed towards the study's primary outcome may be relevant for future studies on integration of palliative care into oncology. [ABSTRACT FROM AUTHOR]

Introduction: Palliative care is a medical and humanitarian approach that improves the quality of life of patients, and their families, who are facing problems associated with chronic and life-threatening illnesses. Few studies have evaluated the effectiveness of mindfulness-based interventions for terminally ill or incurable patients. The aim of this study was to systematically review the literature on the effect of mindfulness-based interventions on symptom control and quality of life in patients in palliative care. Methods: PubMed, Web of Science and Cochrane databases were searched for articles, published between January 2017 and December 2022, in English, including randomized controlled and clinical trials. Participants : terminally ill or incurable patients. Interventions : any mindfulness-based intervention. Comparators : any. Outcomes : symptom control and quality of life. The risk of bias was analysed through Cochrane's ROB-2 tool. Results: Eight studies were included involving 609 patients and 75 dyads patients-spousal caregivers. The overall risk of bias was low to moderate. Mindfulness-based interventions are helpful in managing suffering, anxiety and depressive symptoms, fatigue, insomnia, drowsiness, appetite, and spiritual well-being. Conclusion: Mindfulness-based interventions control several symptoms and improve spiritual quality of life in patients in palliative care. Additionally, their informal caregivers also benefit from these interventions. Future trials are crucial to investigate other effects of mindfulness-based interventions, and their long-term benefits, in patients in palliative care. [ABSTRACT FROM AUTHOR]

Aim: To offer an overall picture of the research published regarding the different aspects of death and dying during the COVID-19 pandemic in journals covering the field of nursing in the Scopus database. Design: bibliometric analysis. Methods: The metadata obtained were exported from Scopus for subsequent analysis through Bibliometrix. Using the VOSviewer co-word analysis function, the conceptual and thematic structure of the publications was identified. Results: A total of 119 papers were retrieved, with the participation of 527 authors. The publications were found in 71 journals covering the nursing area. The main lines of research revolved around the keywords "palliative care" and "end-of-life care" in regard to the ethical, psychological, and organizational challenges faced by the health professionals who cared for these patients. Conclusion: The results obtained offer a range of data and images that characterize the scientific production published on this topic, coming to the conclusion that, due to the multifaceted and multidisciplinary approach to the experience of death, care, and accompaniment in the dying process, bibliometric maps improve the comprehensive understanding of the semantic and conceptual structure of this field of research. This study was retrospectively registered with the OSF Registries on the 14 March 2024. [ABSTRACT FROM AUTHOR]

Objectives: Although often unrecognized, volunteers fulfill many essential roles in hospices and other end-of-life care settings. Volunteers complement the actions of professionals in fulfilling many extra care needs, such as delivering newspapers and tidying bedsides. We explored end-of-life conversations about death and dying between hospice volunteers and terminally ill people, with a particular emphasis on any expressed desire to die. Our 2 research questions were as follows: (1) What is the nature of end-of-life conversations between hospice patients and hospice volunteers? and (2) How do hospice volunteers experience conversations about death and dying with patients who are at the end-of-life? Methods: We conducted semi-structured interviews using an interpretive phenomenological analysis. We recruited hospice volunteers from 4 hospices in Calgary, Edmonton, and Red Deer; 3 larger cities in the province of Alberta, Canada. Results: We interviewed 12 participants to saturation. Four themes emerged: (1) trusting conversations about death and dying in the context of a safe place; (2) normalcy of conversations about death and dying; (3) building meaningful relationships; and (4) end-of-life conversations as a transformative experience. Our results emphasize the importance of preparing volunteers for conversations about death and dying, including the desire to die. Significance of results: The safe environment of the hospice, the commitment to patient confidentiality, and the ability of volunteers to meet the basic and emotional needs of dying people or simply just be present without having formal care duties that need to be completed contribute to volunteers being able to participate in timely and needed conversations about death and dying, including the desire to die. In turn, hospice experiences and end-of-life conversations provide a transformative experience for volunteers. [ABSTRACT FROM AUTHOR]

Objectives: This study examines the association between family conflict and self-efficacy in discussing end-of-life (EOL) care with family members and whether such an association differs by acculturation levels among older Chinese Americans. Method: Data were collected from 213 Chinese Americans ages 65–102 in Phoenix, AZ, and Germantown, MD. We conducted ordinary least squares regression to examine the association between family conflict, acculturation, and self-efficacy in discussing EOL care with family. Results : Family conflict was negatively associated with older adults' self-efficacy in discussing EOL care with family. The negative association between family conflict and self-efficacy in discussing EOL care with family was more pronounced for those with higher levels of acculturation. Conclusions: As one of the first research efforts to study advance care planning among older Chinese Americans, our findings highlight differential effects of family conflict on self-efficacy of EOL care plan discussion within the context of acculturation levels. Geriatric and health social workers should assess and address acculturation to develop family-centered interventions that improve EOL care planning for older Chinese Americans. [ABSTRACT FROM AUTHOR]

The concept of relationship completion is embodied as the core belief for end-of-life care in Taiwan, known as the Four Expressions in Life. No studies have been published investigating and trying to understand how music therapy facilitates the Four Expressions in Life. This convergent mixed-methods study examined the effects of music therapy to facilitate relationship completion for patients at the end of life and their families in Taiwan, and explored their personal experiences in music therapy sessions. Thirty-four patients at end-of-life care and 36 of their family members participated in a single music therapy session with a one-group pretest-posttest design using standardized quality-of-life measures for patients at the end of life and families. A nested sample of 5 patients and 9 family members completed semi-structured interviews. Significant differences between the pre and post session scores were revealed for patients in the Life Completion subscale of the QUAL-E (p  < .001), and the global QoL Indicator (p  < .001), and for families in the Completion subscale of the QUAL-E (Fam) (p  < .001), and the Overall Quality of Life (p  < .001). Four themes around opportunities emerged from the interviews: the opportunity for exploration, for connection, for expression, and for healing. The integrated findings suggest that music therapy facilitated relationship completion and improved quality of life for both patients and their families. Furthermore, this study supports that the transformative level of music therapy practice within a single session for end-of-life care is attainable. [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]

Introduction: The COVID-19 pandemic had a significant impact on care at the end-of-life due to restrictions and other circumstances such as high workload and uncertainty about the disease. The objective of this study is to describe the degree of various signs experienced by healthcare providers throughout the first 18 months of the pandemic and to assess what provider's characteristics and care circumstances related to COVID-19 are associated with distress. Methods: A longitudinal survey study among healthcare providers from different healthcare settings who provided end-of-life care during the pandemic's first 18 months. Data of four time periods were analyzed using descriptive statistics, logistic regression analysis and Generalized Estimating Equation. Results: Of the respondents (n=302) the majority had a nursing background (71.8%) and most worked in a hospital (30.3%). Although reported distress was highest in the first period, during the first wave of COVID-19 pandemic, healthcare providers reported signs of distress in all four time periods. Being more stressed than usual and being regularly exhausted were the most common signs of distress. Healthcare providers working in nursing homes and hospitals were more likely to experience signs of distress, compared to healthcare providers working in hospice facilities, during the whole period of 1.5 years. When HCPs were restricted in providing post-death care, they were more likely to feel more stressed than usual and find their work more often emotionally demanding. Conclusion: A substantial amount of healthcare providers reported signs of distress during the first 1.5 years of the COVID-19 pandemic. A cause of distress appears to be that healthcare providers cannot provide the care they desire due the pandemic. Even though the pandemic is over, this remains an important and relevant finding, as high workload can sometimes force healthcare providers to make choices about how they provide care. Given that this can cause prolonged stress and this can lead to burnout (and HCPs leaving their current positions), it is now especially important to continue observing the long term developments of the well-being of our healthcare providers in palliative care and provide timely and adequate support where needed. [ABSTRACT FROM AUTHOR]

Using data collected through survey questionnaires with fleet managers of 16 (61.5%) Namibian fishing companies, we explored the current practices, challenges, and opportunities in promoting Circular Economy (CE) in the context of End-Of-Life (EOL) fishing gear. Most fishing companies (56.2%) have been in operation for more than 25 years. A majority of fishing companies (62.5%) are involved in demersal trawling, mostly targeting hake (Merluccius species). Survey findings reveal that the companies import fishing gear mostly in a semi - complete format (50.0%). The current durability of fishing nets and lines/ropes is about 3 and 2 years respectively, highlighting a continuous generation of fishing gear waste. We estimated (that) approximately 104 tons of EOL fishing gear, lines/twine and ropes (are) generated annually by the Namibian fishing industry, however about 10% of some parts of the EOL fishing gear are recovered and reused. None of the fishing companies recycle EOL fishing gear, which is mostly attributed to a lack of recycling facilities. Current standard practices of EOL fishing nets, lines and ropes management include selling to employees, donating to other institutions, or disposal at dumping sites. Although some of the EOL fishing nets, lines and ropes are sold at open markets, they are not converted into value-added products, thus they are not fully utilized to significantly contribute to the CE. We recommend the implementation of circular practices such as converting EOL fishing nets, lines and ropes into value-added products such as clothing, shoes, and accessories, i.e., sunglasses, thereby reducing environmental pollution, minimising energy usage, and promoting sustainable production and consumption. [ABSTRACT FROM AUTHOR]

Background: Self-regulation is crucial for nurses who engage in in-depth end-of-life conversations with advanced cancer patients, especially in cultural contexts featuring death taboos. An improved understanding of the self-regulation process of nurses can help them address negative emotions and promote self-growth more effectively. Therefore, this study aimed to explore nurses' self-regulation process after end-of-life conversations with advanced cancer patients. Methods: This study employed a descriptive, qualitative approach. Seventeen nurses from four hospitals and a hospice unit in mainland China were interviewed between September 2022 and June 2023. Data were collected through face-to-face semistructured interviews. A thematic analysis method was used to analyse the data following the guidance of regulatory focus theory. Results: Three main themes were developed: self-regulation antecedents include personality, experience, and support; promotion or prevention is a possible self-regulation process for nurses; both self-exhaustion and self-growth may be the outcomes of self-regulation, as did seven subthemes. Personality tendencies, life experience, and perceived support may affect nurses' self-regulation, thereby affecting their self-regulation outcomes. Conclusions: Nurses exhibit different self-regulatory tendencies and self-regulation outcomes. The provision of peer support and counselling support to nurses is highly important with regard to achieving good self-regulation outcomes. [ABSTRACT FROM AUTHOR]

Background: Emergency medicine (EM) physicians routinely care for patients with serious life-limiting illnesses. Educating EM residents to have general skills and competencies in palliative medicine is a global priority. The purpose of this study was to describe the current status of palliative and end-of-life education in EM residency programs in the United Arab Emirates (UAE) and to identify barriers and opportunities to inculcating palliative care (PC) instruction into EM training in a non-Western setting. Methods: Using the American College of Emergency Medicine's milestones for Hospice and Palliative Medicine for Emergency Medicine as a question guide, semi-structured interviews were conducted with program directors of all 7 EM residency programs in the UAE from January through July 2023. Qualitative content analysis was conducted to identify recurring themes. Results: All program directors agreed that PC knowledge and skills are essential components of training for EM residents but have had variable success in implementing a structured PC curriculum. Six themes emerged, namely the educational curriculum, PC policies and practices, comprehensive PC services, cultural and religious barriers to PC, EM scope of practice, and supporting residents after patient death. Conclusion: UAE national EM residency curriculum development is evolving with an emphasis on developing a structured PC curriculum. As EM residencies implement policies and programs to improve care for patients and families dealing with serious illness, future studies are needed to assess the impact of these initiatives on patient quality of life and physician well-being. [ABSTRACT FROM AUTHOR]

Objectives: To better understand the type of care offered to Italian patients with advanced breast cancer at the End-of-Life (EoL), we conducted a retrospective observational study. EoL was defined as the period of six months before death. Methods: One hundred and twenty-one patients with advanced breast cancer (ABC) treated at IRCCS San Martino Policlinic Hospital who died between 2017 and 2021 were included. Data about patient, disease, and treatment characteristics from breast cancer diagnosis to death, along with information about comorbidities, medications, imaging, specialist evaluations, hospitalization, palliative care and home care, hospice admissions, and site of death were collected. Results: 98.3% of the patients received at least one line of active treatment at EoL; 52.8% were hospitalized during the selected period. Palliative (13.9%), psychological (7.4%), and nutritional evaluations (8.2%) were underutilized. Palliative home care was provided to 52% of the patients. Most of the patients died at home (66.1%) and fewer than one out of five (18.2%) died at the hospital. Among the patients who died at home, 27.3% had no palliative support. Conclusions: Our findings indicate that palliative care in EoL breast cancer patients is still inadequate. Only a minority of patients had psychological and nutritional support While low nutritional support may be explained by the fact that typical symptoms of ABC do not involve the gastrointestinal tract, the lack of psychological support suggests that significant barriers still exist. Data on the site of death are encouraging, indicating that EoL management is increasingly home centered in Italy. [ABSTRACT FROM AUTHOR]

"Caring at the Crossroads" explored the experiences of family caregivers who provided palliative end-of-life care. The study employed a qualitative research design, combining a case study framework with a phenomenological approach. Thirteen participants, selected through purposive and snowball sampling, shared their firsthand experiences. The research method included interviews with the aim of capturing the subjective meanings, emotions, and attachment dynamics, particularly emphasizing the importance of secure attachments in providing stability, trust, and comfort during palliative care. It explored secure, anxious and fearful, and dismissive-avoidant attachment styles, revealing the emotional struggles and conscious choices made by caregivers. The adjustment processes of family caregivers involved a complex interplay of avoidance and approach behaviors. Freeze responses, characterized by hesitation and emotional immobilization, contrasted with flight responses, which involved emotional and physical withdrawal. Approach behaviors, marked by planning and action, demonstrated a proactive and committed approach to caregiving responsibilities. The study emphasized the need to recognize and respect the individual responses of caregivers in the palliative stage. It also acknowledged the various grief experiences that arose after palliative end-of-life care. The research identified four sub-themes: prolonged grief, anticipatory grief, irregular grief, and normal grief. These different patterns of grief highlighted the importance of personalized and empathetic support strategies to address the unique challenges faced by caregivers. The findings of this study provided valuable insights for psychology and counseling, offering understanding and empathy to those who navigated caregiving in the midst of love, pain, and resilience. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) describes the process of supporting individuals at any age or stage of health to consider and share their personal values, life goals, and preferences regarding future health care. Engaging in ACP is associated with better-quality of care in which people receive care in lines with their wishes, values and preferences. Direct translations of ACP guides and resources do not attend to the considerable inter- and intra-ethnic variations in cultural and religious or spiritual beliefs that shape preferences among people from culturally and linguistically diverse (CALD) backgrounds. ICanCarePlan is a three-year project that aims to determine the prevalence of ACP documentation among people from CALD backgrounds with cancer, identify resources available and their use to support ACP among CALD communities, identify barriers and facilitators of person-centred ACP, and to develop, through co-design with consumers and clinicians, approaches that enhance the process ACP for people from CALD backgrounds. Method: A mixed-method sequential approach will be used comprising of four studies. Study one is retrospective medical record review of approximately 1500 medical records to establish the prevalence of ACP documentation among CALD patient records in cancer services. Study two is a document analysis synthesising the resources available in the Australian health system to support ACP. Study three is a qualitative study with healthcare staff and consumers to explore barriers and enablers of person-centred ACP. Evidence generated from studies one to three will inform the conduct of co-design with stakeholders to develop approaches to improve ACP processes among CALD communities. Language, technical and financial support for meaningful involvement with consumers from CALD backgrounds throughout this project is outlined. A plan for distress management is also made due to sensitive nature of the topic. The research project has also established a project steering group consisting of three consumer members who are from CALD backgrounds. Discussion: The project will address a national priority issue for a growing population of CALD communities in Australia. The project will provide novel evidence of ACP among CALD communities and novel strategies developed with stakeholders to enhance uptake and experiences of ACP. [ABSTRACT FROM AUTHOR]

Background: Indigenous palliative persons and their families often have different values, spiritual traditions, and practices from Western culture and Canadian health systems. Additionally, many healthcare policies and practices have been established without adequate consultation of the Indigenous populations they are meant to serve. This can result in barriers to Innu receiving culturally safe end-of-life care. Innu community leaders from Sheshatshiu, Labrador, have identified a need for further research in this area. The purpose of this study is to: (1) describe the cultural and spiritual practices related to death and dying of the Innu in Sheshatshiu; (2) identify aspects of current end-of-life care delivery that serve and/or fail to meet the cultural and spiritual needs of the Innu in Sheshatshiu; and (3) explore ways to integrate current end-of-life care delivery practices with Innu cultural and spiritual practices to achieve culturally safer care delivery for the Innu. Methods: This qualitative patient-oriented research study was co-led by Innu investigators and an Innu advisory committee to conduct semi-structured interviews of 5 healthcare providers and 6 decision-makers serving the community of Sheshatshiu and a focus group of 5 Innu Elders in Sheshatshiu. Data was analyzed thematically from verbatim transcripts. The codebook, preliminary themes, and final themes were all reviewed by Innu community members, and any further input from them was then incorporated. Quotations in this article are attributed to Innu Elders by name at the Elders' request. Results: The findings are described using eight themes, which describe the following: relationships and visitation support a "peaceful death"; traditional locations of death and dying; the important role of friends and community in providing care; flexibility and communication regarding cultural practices; adequate and appropriate supports and services; culturally-informed policies and leadership; and Innu care providers and patient navigators. Conclusions: The Innu in Sheshatshiu have a rich culture that contributes to the health, care, and overall well-being of Innu people approaching end of life. Western medicine is often beneficial in the care that it provides; however, it becomes culturally unsafe when it fails to take Innu cultural and spiritual knowledge and traditions into account. [ABSTRACT FROM AUTHOR]

Background: Medical Assistance in Dying (MAiD) was legalized in Canada in 2016. Canada's legislation is the first to permit Nurse Practitioners (NP) to serve as independent MAiD assessors and providers. Registered Nurses' (RN) also have important roles in MAiD that include MAiD care coordination; client and family teaching and support, MAiD procedural quality; healthcare provider and public education; and bereavement care for family. Nurses have a right under the law to conscientious objection to participating in MAiD. Therefore, it is essential to prepare nurses in their entry-level education for the practice implications and moral complexities inherent in this practice. Knowing what nursing students think about MAiD is a critical first step. Therefore, the purpose of this study was to develop a survey to measure nursing students' knowledge, attitudes and beliefs, influences, and willingness to be involved in MAiD in the Canadian context. Methods: The design was a mixed-method, modified e-Delphi method that entailed item generation from the literature, item refinement through a 2 round survey of an expert faculty panel, and item validation through a cognitive focus group interview with nursing students. The settings were a University located in an urban area and a College located in a rural area in Western Canada. Results: During phase 1, a 56-item survey was developed from existing literature that included demographic items and items designed to measure experience with death and dying (including MAiD), education and preparation, attitudes and beliefs, influences on those beliefs, and anticipated future involvement. During phase 2, an expert faculty panel reviewed, modified, and prioritized the items yielding 51 items. During phase 3, a sample of nursing students further evaluated and modified the language in the survey to aid readability and comprehension. The final survey consists of 45 items including 4 case studies. Discussion: Systematic evaluation of knowledge-to-date coupled with stakeholder perspectives supports robust survey design. This study yielded a survey to assess nursing students' attitudes toward MAiD in a Canadian context. Conclusion: The survey is appropriate for use in education and research to measure knowledge and attitudes about MAiD among nurse trainees and can be a helpful step in preparing nursing students for entry-level practice. [ABSTRACT FROM AUTHOR]

Background: In order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify people with deteriorating health and unmet palliative care needs and to plan care. The SPICT™ tool was designed to assist with this. Aim: The aim was to examine the impact of the SPICT™ on advance care planning conversations and the extent of its use in advance care planning for adults with chronic life-limiting illness. Methods: In this scoping review records published between 2010 and 2024 reporting the use of the SPICT™, were included unless the study aim was to evaluate the tool for prognostication purposes. Databases searched were EBSCO Medline, PubMed, EBSCO CINAHL, APA Psych Info, ProQuest One Theses and Dissertations Global. Results: From the search results 26 records were reviewed, including two systematic review, two theses and 22 primary research studies. Much of the research was derived from primary care settings. There was evidence that the SPICT™ assists conversations about advance care planning specifically discussion and documentation of advance care directives, resuscitation plans and preferred place of death. The SPICT™ is available in at least eight languages (many versions have been validated) and used in many countries. Conclusions: Use of the SPICT™ appears to assist advance care planning. It has yet to be widely used in acute care settings and has had limited use in countries beyond Europe. There is a need for further research to validate the tool in different languages. Key message: What is already known on this topic? • The SPICT™ was developed to assist clinicians to screen patients for palliative care needs. What this review found. • The SPICT™ assists conversations about advance care planning and facilitates changes in documented goals of care. • The SPICT™ is available in at least eight languages (and used in many countries. How the findings of this review may affect practice and research. • Evidence suggests that formalising screening for palliative care needs using the SPICT™ is advantageous for advance care planning; clinicians should consider using the SPICT™ to initiate discussions with people with life limiting conditions. • Further research is required to validate the tool in different languages and extend its use in acute care settings and with other patient cohorts. [ABSTRACT FROM AUTHOR]

Background: Ethical decision-making in end-of-life care is one of the most challenging aspects of healthcare: providing ethical care to the society is one of the most important responsibilities of healthcare professionals. In order to assess nurses' ethical decision-making in end-of-life care, researchers need a specialized and comprehensive instrument which is sufficiently valid and reliable. The present study was conducted to translate and test the psychometric properties of the Persian version of Nurses' Ethical Decision-Making in End-of-Life Care Scale (NEDM-EOLCS). Methods: This is a cross-sectional, multi-centric study with a methodological design The participants were selected via convenience sampling from five hospitals located in Iran. In total, 1320 nurses (660 for exploratory factor analysis and 660 for confirmatory factor analysis) participated in the study. The original NEDM-EOLCS was translated into Persian and subsequently the psychometric properties of the scale were assessed according to COSMIN criteria. Results: Exploratory factor analysis (EFA) showed the factor loading of the 55 items to be between 0.62 and 0.88, all of which were significant. Also, exploratory factor analysis showed that 3 factors (perceived professional accountability, moral reasoning/moral agency and moral practice) explained 74.51% of the variance. Confirmatory factor analysis (CFA) results verified the good fit of the data (a chi-square of 21.74, df = 7, P = 0.001) RMSEA = 0.01, CFI = 0.96, NFI = 0.95, and TLI = 0.97). The reliability of the scale was measured in terms of its internal consistency and the Cronbach's alpha of the whole instrument was found to be 0.98. Conclusion: The Persian version of NEDM-EOLCS for nurses is sufficiently valid and reliable. Thus, this instrument can be used to measure nurses' ethical decision-making in end-of-life care and identify the most effective strategies, e.g. educational interventions, to improve ethical decision-making skills in end-of-life care in these healthcare professionals as necessary. [ABSTRACT FROM AUTHOR]

Background and aim: While intensive care unit (ICU) mortality rates in India are higher when compared to countries with more resources, fewer patients with clinically futile conditions are subjected to limitation of life-sustaining treatments or given access to palliative care. Although a few surveys and audits have been conducted exploring this phenomenon, the qualitative perspectives of ICU physicians regarding end-of-life care (EOLC) and the quality of dying are yet to be explored. Methods: There are 22 eligible consultant-level ICU physicians working in multidisciplinary ICUs were purposively recruited and interviewed. The study data was analyzed using reflexive thematic analysis (RTA) with a critical realist perspective, and the study findings were interpreted using the lens of the semiotic theory that facilitated the development of themes. Results: About four themes were generated. Intensive care unit physicians perceived the quality of dying as respecting patients' and families' choices, fulfilling their needs, providing continued care beyond death, and ensuring family satisfaction. To achieve this, the EOLC process must encompass timely decision-making, communication, treatment guidelines, visitation rights, and trust-building. The contextual challenges were legal concerns, decision-making complexities, cost-related issues, and managing expectations. To improve care, ICU physicians suggested amplifying patient and family voices, building therapeutic relationships, mitigating conflicts, enhancing palliative care services, and training ICU providers in EOLC. Conclusion: Effective management of critically ill patients with life-limiting illnesses in ICUs requires a holistic approach that considers the complex interplay between the EOLC process, its desired outcome, the quality of dying, care context, and the process of meaning-making by ICU physicians. [ABSTRACT FROM AUTHOR]

This umbrella review aimed to examine and synthesize qualitative studies that explored the barriers and facilitators of advance care planning for persons with dementia, their families, and their healthcare professionals and caregivers. The modified umbrella review approach developed by the Joanna Briggs Institute was followed. Five major English databases were searched. Four reviews based on 38 primary qualitative studies were included. The methodological quality of the included reviews was moderate to high. The synthesis yielded 16 descriptive themes and five analytical themes: making the wishes/preferences of persons with dementia visible; constructive collaboration based on stakeholders having positive relationships; emotional chaos in facing end-of-life substitute decision-making; initiating the advance care planning process; and preparedness and commitment of healthcare providers to advance care planning. Comprehensive and workable strategies are required to overcome complex and interrelated barriers involving not only healthcare professionals but also organizational and systemic challenges. [ABSTRACT FROM AUTHOR]

This study aimed to understand the experiences of bereaved family members in view of restrictive COVID guidelines using qualitative approach. 10 Hindu, Gujarati bereaved family members who lost their loved ones during the first wave were interviewed telephonically after a month of their loss. Findings were difficulty in proper communication during hospitalization, disrupted end-of-life and funeral rituals and accepting harsh realities related to the changes imposed by using content analysis. Most of the family members felt that there was a need of staying with the patients. Telephonic mode of communication was not sufficient for them and created doubts related to death. Most of them felt remorseful as they were not able to see or bring their loved one home during their last moments and felt deprived of the traditional rituals. Also, they had to deal with their grief by themselves. [ABSTRACT FROM AUTHOR]

The projected rise in health-related suffering warrants the integration of palliative care across all health systems. For traditionally non-palliative care settings, barriers and enablers to palliative care integration remain poorly understood. This study sought to explore these barriers and enablers in the Emergency and Burn Units across two healthcare facilities in the middle belt of Ghana using qualitative description. Thirty-nine healthcare staff comprising 20 burn care staff and 19 ED staff were purposively recruited and interviewed. Interviews were transcribed following which thematic analysis was performed inductively. Two themes and six subthemes emerged from the data. The Ghanaian socio-cultural context often crippled the discussion of death and dying. Overall, there is a perceived tension between emergency/burns and end-of-life care. Opportunities however exist to improve the situation which will require more work regarding curricula improvement, providing avenues for professional development, culturally sensitive communication, and identifying strategies of engaging relatives. [ABSTRACT FROM AUTHOR]

"Do Not Resuscitate" (DNR) order is one of the challenging issues encountered in end of life care. This study aimed to determine the effect of education about DNR on the views of senior nursing students. Students, who selected elective course of palliative care and received education about DNR formed the intervention group (n = 106) while the students who did not select the lesson were in the control group (n = 107). Data were collected using a questionnaire. It revealed that the students who had education about DNR agreed with the positive statements about DNR more than the control group. Also, intervention group students had a high agreement DNR should be a part of vocational training for health professionals. It is important and necessary to focus on the special role of nurses when a DNR order is given, and nursing education raised the awareness and views about DNR according to the data from this study. [ABSTRACT FROM AUTHOR]

Background: To improve the quality of palliative care, six evidence‐based tools were implemented in 10 care services specialised in care for people with intellectual disabilities. Contextual differences were taken into account by using a participatory action research approach. Method: The RE‐AIM framework (Reach, Effectiveness, Adoption, Implementation and Maintenance) structured the evaluation. Data sources were online questionnaires completed by 299 professionals at baseline (response 45.2%) and 250 professionals after 2.5 years (35.1%), 11 semi‐structured group interviews with 43 professionals, field notes and implementation plans. Results: A total of 767 professionals and 43 teams were reached. The effectiveness of the intervention was demonstrated in an improved knowledge of palliative care policy and increased competences among professionals. 79% of the professionals adopted tools in the toolbox. The participatory action research method was perceived as valuable in driving change. Conclusions: Improving palliative care needs a context‐specific, flexible approach, with involvement of all stakeholders. [ABSTRACT FROM AUTHOR]

Background: In Austria, specialized palliative care (SPC) access is limited, with unclear referral criteria, making it challenging to identify hospitalized patients requiring SPC and determine referral timing and mortality at the palliative care unit (PCU). Methods: This retrospective cohort study analyzed patients who underwent a palliative care (PC) needs assessment between March 2016 and November 2021 and were subsequently admitted to the PCU of Austria's largest academic hospital. Demographic, clinical, and standardized referral form data were used for analysis, employing descriptive statistics and logistic regression. Results: Out of the 903 assessed patients, 19% were admitted to the PCU, primarily cancer patients (94.7%), with lung (19%) and breast cancer (13%) being most prevalent. Common referral reasons included pain (61%) and nutritional problems (46%). Despite no significant differences in referral times, most patients (78.4%) died in the PCU, with varying outcomes based on cancer type. Referral reasons like pain (OR = 2.3), nutritional problems (OR = 2.4), and end-of-life care (OR = 6.5) were significantly associated with the outcome PCU mortality. Conclusions: This study underscores Austria's SPC access imbalance and emphasizes timely PC integration across disciplines for effective advance care planning and dignified end-of-life experiences in PCUs. [ABSTRACT FROM AUTHOR]

Introduction: Early integration of palliative care and advance care planning (ACP) play an increasingly important role in the treatment of patients with advanced cancer. Advance directives (ADs) and patients' preferences regarding end-of-life (EoL) care are important aspects of ACP. In the outpatient setting, the prevalence of those documents and EoL care wishes is not well investigated, and changes in the longitudinal course are poorly understood. Methods: From June 2020 to August 2022, 67 outpatients with advanced solid tumors undergoing palliative cancer therapy were interviewed on the topic of ACP in a longitudinal course. From this database, the prevalence of ADs, healthcare proxy, EoL care wishes, and the need for counseling regarding these issues were collected. In addition, EoL care wishes were examined for their stability. Results: Fifty-one patients (76.1%) reported having ADs, and 41 patients (61.2%) reported having a healthcare proxy. Nineteen patients (37.3%) with ADs and 11 patients (68.7%) without ADs indicated a wish for counseling. Reported EoL care wishes remained stable over a period of approximately 6 months. Nevertheless, intraindividual changes occurred over time within the different EoL care preferences. The desire for resuscitation and dialysis were significantly higher in men than in women (resuscitation: 15 of 21 men [71.4%] versus 9 of 22 women [40.9%], odds ratio [OR] 3.611, 95% confidence interval [CI], 1.01–12.89, p = 0.048; dialysis: 16 of the 23 men [69.6%] versus 9 of the 25 women [36.0%], OR: 4.063, 95% CI: 1.22–13.58, p = 0.023). Conclusion: Our results show a reasonably high percentage of ADs and healthcare proxies in our study cohort. The observed stability of EoL requests encourages the implementation of structured queries for ADs and healthcare proxy for outpatients undergoing palliative treatment. Our data suggest that gender-specific characteristics should be further investigated in this context. [ABSTRACT FROM AUTHOR]

Background: Educating Social Workers in Palliative and End-of-Life Care (ESPEC) is a nationally scalable continuing education program designed to improve the knowledge and skills of frontline health social workers caring for patients with serious illness. Objectives: This article describes ESPEC's rationale, development, and initial implementation. Design: Following the creation of consensus-derived core primary palliative care competencies for health primary care social workers based on the eight domains of palliative care outlined in the National Consensus Project Guidelines for Quality Palliative Care, an evidence-based curriculum was developed. This was used to develop a hybrid training model with a self-study component, synchronous instructor-led skills-based training, leadership training, and mentorship. The interactive curriculum incorporates patient scenarios highlighting the health social work role. Training targets high-impact skills—the biopsychosocial-spiritual assessment, advance care planning, family meetings, and interprofessional communication—and professional development. Settings/Subjects: ESPEC was launched in the United States in collaboration with the National Association of Social Workers (NASW) and the Social Work Hospice and Palliative Care Network (SWHPN). Results: The preliminary launch demonstrated high user acceptability, positive ratings for content and format, and gains in knowledge and competence. Conclusions: Data suggest that ESPEC can increase health social workers' knowledge and confidence as providers of palliative care interventions. National dissemination is ongoing. [ABSTRACT FROM AUTHOR]

Background: Palliative care (PC) plays a crucial role in improving the quality of life for terminally ill patients and their families. In Saudi Arabia, the Reform of Healthcare Vision 2030 has recognized the importance of PC and aimed to enhance its availability and quality. Objectives: This study evaluates the current state of PC in Saudi Arabia post-Vision 2030 reforms. Design: A cross-sectional survey-based research was conducted at a ministry of health health care facility to assess the accessibility and quality of PC services. Setting/Subjects: The survey collected quantitative and qualitative data from PC managers in Saudi Arabia. Retrospective analysis of annual death records determined the demand for PC. Results: The results indicate notable progress in developing PC services in Saudi Arabia, including increased number of PC units, community home care services, outpatient services, and consultations. However, challenges persist in terms of geographical distribution, resource allocation, and availability of pain medications, particularly opioids. The study highlights the substantial need for PC for both cancer and noncancer patients, emphasizing the importance of expanding these services. Conclusions: To further improve PC, policymakers and stakeholders should prioritize resource allocation, health care workforce, and access to pain medications. These efforts will address the growing demand for PC and benefit terminally ill patients and their families in Saudi Arabia. [ABSTRACT FROM AUTHOR]

Background: Gaps remain in our understanding of the intensity and timing of specialty palliative care (SPC) exposure on end-of-life (EOL) outcomes. Objective: Examine the association between intensity and timing of SPC and hospice (HO) exposure on EOL care outcomes. Design, Settings, Participants: Data for this cohort study were drawn from 2021 adult decedents from Kaiser Permanente Southern California and Colorado (n = 26,251). Caregivers of a decedent subgroup completed a postdeath care experience survey from July to August 2022 (n = 424). Measurements: SPC intensity (inpatient, outpatient, and home-based) and HO exposure in the five years before death were categorized as: (1) No SPC or HO; (2) SPC-only; (3) HO-only; and (4) SPC-HO. Timing of SPC exposure (<90 or 90+ days) before death was stratified by HO enrollment. Death in the hospital and potentially burdensome treatments in the last 14 days of life were extracted from electronic medical records (EMRs) and claims. EOL care experience was obtained from the caregiver survey. Results: Among the EMR cohort, exposure to SPC and HO were: No SPC or HO (38%), SPC-only (14%; of whom, 55% received inpatient SPC only), HO-only (20%), and SPC-HO (28%). For decedents who did not enroll in HO, exposure to SPC 90+ days versus <90 days before death was associated with lower risk of receiving potentially burdensome treatments (adjusted relative risk, aRR: 0.69 [95% confidence interval, CI: 0.62–0.76], p < 0.001) and 23% lower risk of dying in the hospital (aRR: 0.77 [95% CI: 0.73–0.81], p < 0.001). Caregivers of patients in the HO-only (aRR: 1.27 [95% CI: 0.98–1.63], p = 0.07) and SPC-HO cohorts (aRR: 1.19 [95% CI: 0.93–1.52], p = 0.18) tended to report more positive care experience compared to the no SPC or HO cohort. Conclusion: Earlier exposure to SPC was important in reducing potentially burdensome treatments and death in the hospital for decedents who did not enroll in HO. Increasing availability and access to community-based SPC is needed. [ABSTRACT FROM AUTHOR]

Background: Understanding interventions preceding death in children with immunocompromised conditions is important to ensure a peaceful and dignified perideath experience. The aim of this study was to describe the number of interventions performed in the pediatric intensive care unit (PICU) within the 48 hours before death in this population. Methods: This was a single-center, retrospective cohort study of all children with an underlying oncologic, hematologic, or immunologic diagnosis admitted to the PICU for at least 72 hours between 2014 and 2021. Medical records were reviewed for interventions within 48 hours preceding death and for palliative care involvement. Interventions were defined as new or escalations in respiratory support, cardiopulmonary resuscitation (CPR), vascular access, drains, and radiographic studies. Associations were evaluated using simple logistic regression. Results: A total of 55 patients were included in this study. The predominant PICU admission diagnoses were respiratory (51%), followed by shock (25%), and neurologic diagnoses (9%). These predominant diagnoses were similar perideath. At PICU admission, only 1 patient had a do-not-resuscitate (DNR) order. Forty-six percent had a DNR order 48 hours preceding death, and 91% had DNR orders in place at time of death. During the 48-hour period preceding death, 80% of children received at least one intervention. Radiographic studies were the most common, used in 78% of children, followed by respiratory (20%), vascular (16%), CPR (13%), and drain placement (7%). Palliative care was involved in 38% of cases and was associated with a decrease in the number of radiologic interventions (p = 0.028) and CPR (p = 0.026). Conclusions: Children in the PICU with underlying immunocompromised conditions frequently receive interventions within the 48-hour period preceding death. Palliative care involvement was associated with fewer radiographic studies and fewer occurrences of CPR. The impact of interventions on the dying experience warrants further investigation. [ABSTRACT FROM AUTHOR]

Clinically assisted hydration during end-of-life care among patients with cancer is controversial; practice varies between clinical settings and countries, and there is a lack of evidence. To examine whether breathlessness, respiratory secretion, or confusion correlates with receiving parenteral hydration during end of life, adjusted for sex, age, and place of death. The Swedish Register of Palliative Care database was used to collect data about the usage of parenteral hydration during the last day of life, and the occurrence of three symptoms during the last week. Adults dying from cancer during 2011–2021 in hospitals, in residential care homes, and within specialized palliative care were included. Correlation between parenteral hydration and symptoms was examined using χ2-test and logistic regression. A total of 147,488 patients were included in the study. Parenteral hydration was more often prescribed to younger persons, to men, and in acute hospitals (compared to other settings), p < 0.001 in all three comparisons. Patients with hematological malignancies (20%) and ovarian cancer (16%) were most likely to receive parenteral hydration, while those with brain tumors (6%) were least likely. The presence of all three analyzed symptoms during the last week (breathlessness, respiratory secretion, and confusion) were significantly correlated with having received parenteral hydration during the last day of life (p < 0.001). In the final logistic regression model adjusted for age, sex, and place of death, the only symptom with remaining correlation to parenteral hydration was breathlessness (OR 1.56, 95% CI 1.50–1.6). There is an association between parenteral hydration and increased breathlessness in patients with cancer. Provision of parenteral hydration is more prevalent in men, younger patients, and those with hematological malignancies or ovarian cancer, and most widespread in acute hospital settings. [ABSTRACT FROM AUTHOR]

Gender and personality may individually impact end-of-life care. Men often receive more aggressive treatments than women near death, and personality – particularly openness – may be associated with increased care utilization when it diverges from traditional treatment norms. However, research has not examined the interaction of these variables in a dyadic context. This study examined the dyadic effects of patient gender and caregiver personality on end-of-life care. Using data from the VOICE randomized clinical trial, the present sample consisted of patient-caregiver dyads receiving outpatient care for advanced cancer in Sacramento and Western New York. Analyses assessed whether caregiver personality was associated with gender-based differences in patient chemotherapy or emergency department/inpatient visits in the 30 days before death. Logistic regression examined the interaction between caregivers' Big Five personality dimensions and patient gender while accounting for patient and caregiver demographic and health characteristics. Of a total of 134 patient-caregiver dyads, 19.4% (n = 26) of patients received chemotherapy and 47.8% (n = 64) had an emergency department/inpatient visit in the 30 days before death. Results demonstrated a significant interaction between caregiver openness and patient gender on receipt of chemotherapy (odds ratio = 0.07, p = 0.006). When caregivers were less open, men were more likely to receive chemotherapy near death, whereas when caregivers were more open, women were more likely to receive chemotherapy near death. Results suggest caregiver personality characteristics, particularly openness, might disrupt gender-based treatment norms at end-of-life. Findings demonstrate that patient and caregiver factors can interact to explain patient healthcare utilization. [ABSTRACT FROM AUTHOR]

The place where people are cared towards the end of their life and die is a complex phenomenon, requiring a deeper understanding. Honoring preferences is critical for the delivery of high-quality care. In this umbrella review we examine and synthesize the evidence regarding preferences about place of end-of-life care and death of patients with life-threatening illnesses and their families. Following the Joanna Briggs Institute methodology, we conducted a comprehensive search for systematic reviews in PsycINFO, MEDLINE, EMBASE, CINAHL, Epistemonikos, and PROSPERO without language restrictions. The search identified 15 reviews (10 high-quality, three with meta-analysis), covering 229 nonoverlapping primary studies. Home is the most preferred place of end-of-life care for both patients (11%–89%) and family members (23%–84%). It is also the most preferred place of death (patient estimates from two meta-analyses: 51%–55%). Hospitals and hospice/palliative care facilities are preferred by substantial minorities. Reasons and factors affecting preferences include illness-related, individual, and environmental. Differences between preferred places of care and death are underexplored and the evidence remains inconclusive about changes over time. Congruence between preferred and actual place of death ranges 21%-100%, is higher in studies since 2004 and a meta-analysis shows noncancer patients are at higher risk of incongruence than cancer patients (OR 1.23, 95% CI: 1.01–1.49, I2 = 62%). These findings are a crucial starting point to address gaps and enhance strategies to align care with patient and family preferences. To accurately identify patient and family preferences is an important opportunity to change their lives positively. [ABSTRACT FROM AUTHOR]

Background: An ageing prison population with complex health needs combined with punitive sentencing practices means palliative care for incarcerated individuals is increasingly important. However, there is limited evidence regarding the models of care delivery in high-income countries, and their associated challenges and benefits. Aim: To develop a typology of models of palliative care provision for incarcerated individuals, synthesise evidence of their outcomes and describe facilitators of and challenges in delivering different models of palliative and end-of-life care in prisons. Design: Scoping review following Arksey and O'Malley, with narrative synthesis. The protocol was registered prospectively (reviewregistry1260). Data sources: MEDLINE, EMBASE, CINAHL, PsycINFO, the Social Sciences Citation Index and grey literature were searched on 15th March 2023. The Mixed Methods Appraisal Tool (MMAT) was used for quality appraisal. Results: A total of 16,865 records were screened; 22 peer-reviewed articles and 18 grey literature sources met the inclusion criteria. Three models were identified: Embedded Hospice, Outsourcing Care and Community Collaboration. The Embedded Hospice model shows potential benefits for patients and prisons. Outsourcing Care may miss opportunities for comprehensive care. Collaborative Care relies on proactive prison-community relationships that could be formalised for improvement. Psychosocial and bereavement needs of those dying in prison and their caregivers lack sufficient documentation. Conclusion: Further research is needed to evaluate prison hospice costs and examine how prison hospices impact compassionate release usage. Beyond the USA, policies might formalise care pathways and recognise best practices. Further investigation to address psychosocial needs of people in prison with life-limiting illnesses and post-death bereavement support is required. [ABSTRACT FROM AUTHOR]

Background: It is unclear when people with amyotrophic lateral sclerosis and their family carers think about their future, what they would prefer in terms of care, and how their ideas change over time. Aim: Understanding experiences with advance care planning of persons with amyotrophic lateral sclerosis and their family carers—and if, when, how, and why these experiences change over time. Design: A qualitative longitudinal interview study. Analysis involved content analysis, followed by a two-step timeline method to describe changes in advance care planning experiences within and across participants. Setting/participants: Nine persons with amyotrophic lateral sclerosis and nine family carers who were interviewed three times over a 9-month period. Results: All participants thought about future care, but few talked about it. Over time, advance care planning experiences were influenced by intertwined elements: (1) experienced physical decline and related future care needs; (2) how persons with amyotrophic lateral sclerosis identify themselves as patients; (3) obtaining information about diagnosis and prognosis; (4) professionals initiating conversations about medical aspects of end-of-life decisions; (5) balancing between hope to remain stable and worry about the future; and (6) protecting themselves and each other from worries about the future. Conclusion: This study emphasizes how factors such as coping with the disease and relational dynamics shape individuals' thoughts about future care over time and how psychological, social, and medical factors are interwoven in advance care planning. The findings advocate for a process-oriented perspective, portraying advance care planning as an ongoing dialog, encompassing the needs, concerns, and emotions of both people with amyotrophic lateral sclerosis and their family carers. [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]

Simple Summary: Psilocybin therapy shows promise for reducing anxiety and depression and improving psychological well-being in cancer patients nearing the end of life. However, providing this treatment outside of tightly controlled research studies is extremely challenging. In 2020, Oregon became the first U.S. state to legalize psilocybin therapy for depression related to terminal illnesses such as advanced cancer. This review examines the published evidence on psilocybin's therapeutic potential as well as the multitude of legal, ethical, and logistical hurdles Oregon has faced while attempting to roll out regulated psilocybin services over the past year. The aim is to shed light on the complex issues involved in responsibly implementing psychedelic-assisted therapy for patient populations with serious psychological distress. By proactively identifying and addressing these challenges, appropriate standards of care and equitable access to psilocybin treatment can be ensured as it transitions from research to real-world clinical practice. Insights from Oregon's experience as the pioneering state can help guide a rigorous, ethical path forward. Despite the legalization of psilocybin therapy for depression in terminal illnesses such as advanced cancer through Oregon's Measure 109 in 2020, significant challenges have impeded its implementation. This review synthesizes the empirical data supporting the utilization of psilocybin therapy for addressing cancer-related depression, including an evaluation of its purported benefits and potential adverse effects. It provides a comprehensive examination of therapeutic strategies, dosing regimens, and barriers to ensuring responsible and equitable access. Salient issues explored include the development of ethical protocols, integration within healthcare systems, ensuring statewide availability, resolving legal ambiguities, and defining clinical standards. Oregon's pioneering role serves as a case study, highlighting the necessity of addressing regulatory, logistical, and ethical obstacles to ensure the establishment of rigorous and equitable psilocybin care models. [ABSTRACT FROM AUTHOR]

Introduction: Patients with hematologic malignancies (HMs) often face challenges in accessing palliative care (PC) and receiving quality end‐of‐life (EOL) care. We examined factors associated with referrals to tertiary PC and the effects of tertiary PC on EOL care in patients with HMs. Method: We included patients with HMs who were admitted to a university‐affiliated hospital and died during hospitalization between January 2018 and December 2021. We investigated the receipt of PC consultations, patient characteristics, and EOL care indicators. Results: Overall, 487 patients were included in the analysis, with 156 (32%) undergoing PC consultation. Sex, residence, disease status, and admission purpose were factors associated with the likelihood of PC consultation, and there has been an increasing trend in the frequency of consultations in recent cases. A higher proportion of patients who received PC completed advance statements and life‐sustaining treatment documents. Patients who received PC had lower rates of aggressive EOL care, including chemotherapy and intensive care unit admission, than those who did not receive PC. Notably, PC reduced the number of blood transfusions. Conclusion: Tertiary PC aims to reduce aggressive EOL care through patient‐centered goal‐of‐care discussions. Therefore, there is an imperative need for concerted efforts toward seamless integration of PC. [ABSTRACT FROM AUTHOR]