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ObjectiveThis study aimed to examine self-reported code-status practice patterns among emergency clinicians from Japan and the U.S.MethodsA cross-sectional questionnaire was distributed to emergency clinicians from one academic medical center and four general hospitals in Japan and two academic medical centers in the U.S. The questionnaire was based on a hypothetical case involving a critically ill patient with end-stage lung cancer. The questionnaire items assessed whether respondent clinicians would be likely to pose questions to patients about their preferences for medical procedures and their values and goals.ResultsA total of 176 emergency clinicians from Japan and the U.S participated. After adjusting for participants' backgrounds, emergency clinicians in Japan were less likely to pose procedure-based questions than those in the U.S. Conversely, emergency clinicians in Japan showed a statistically higher likelihood of asking 10 out of 12 value-based questions.ConclusionSignificant differences were found between emergency clinicians in Japan and the U.S. in their reported practices on posing procedure-based and patient value-based questions.Practice implicationsSerious illness communication training based in the U.S. must be adapted to the Japanese context, considering the cultural characteristics and practical responsibilities of Japanese emergency clinicians.

BackgroundEnd-of-life (EOL) care patterns may differ by physician age given differences in how physicians are trained or changes associated with aging. We sought to compare patterns of EOL care delivered to older Americans according to physician age.MethodsWe conducted a cross-sectional study of a 20% sample of Medicare fee-for-service beneficiaries aged ≥66 years who died in 2016-2019 (n = 487,293). We attributed beneficiaries to the physician who had >50% of primary care visits during the last 6 months of life. We compared beneficiary-level outcomes by physician age (

BACKGROUND: Understanding how the coronavirus disease 2019 (COVID-19) pandemic affected site of death-an important patient-centered outcome related to end-of-life care-would inform healthcare system resiliency in future public health emergencies. OBJECTIVE: To evaluate the changes in site of death during the COVID-19 pandemic among older adults without a COVID-19 diagnosis. DESIGN: Using a quasi-experimental difference-in-differences method, we estimated net changes in site of death during the pandemic period (March-December 2020) from the pre-pandemic period (January-February 2020), using data on the same months in prior years (2016-2019) as the control. PARTICIPANTS: A 20% sample of Medicare Fee-for-Service beneficiaries aged 66 years and older who died in 2016-2020. We excluded beneficiaries with a hospital diagnosis of COVID-19. MAIN MEASURES: We assessed each of the following sites of death separately: (1) home or community; (2) acute care hospital; and (3) nursing home. KEY RESULTS: We included 1,133,273 beneficiaries without a hospital diagnosis of COVID-19. We found that the proportion of Medicare beneficiaries who died at home or in the community setting increased (difference-in-differences [DID] estimate, + 3.1 percentage points [pp]; 95% CI, + 2.6 to + 3.6 pp; P

ABSTRACT Background Methods Results Conclusions Death and dying remain taboo subjects in society today and therefore people may come to the end of their life without having thought about what death and dying might be like and what it is to have a good death. The purpose of this qualitative study was to understand the experience of death and dying in a hospital emergency department. Culturally, some individuals are unprepared for death, and when death occurs in an emergency setting it can be particularly shocking.A phenomenological study was undertaken, based on the existential phenomenology of Merleau‐Ponty; and framed by the nurse theorist Hildegard Peplau. Bereaved relatives and registered nurses gave in‐depth interviews describing their experiences and the interviews were analysed using an adaptation of the work of Thomas and Pollio (2002) and Hycner (1985), consistent with Merleau‐Ponty's theories.The study brings new understanding of what it is like to die in an emergency setting through new understanding of what the accompanying relatives/friends of the deceased person experience, aided by new understanding of the experiences of emergency nurses.A nursing model based both on the work of Peplau (Parse et al. 2000) and on the work of the nurse theorists Ruland and Moore (1998) and Zaccara et al. (2017) was devised for use in the emergency department when death occurs. It is hoped that this model will help nurses improve the care given to this group of patients and their loved ones. [ABSTRACT FROM AUTHOR]

Background: Globally, digital transformation has been sweeping through healthcare in recent years. Reflecting this global change, Australia's health and social care sector is also undergoing rapid digitalisation. Digital approaches can enhance care planning and coordination activities, as well as improve efficiencies in documentation and coordination of care. As the aged care environment continues to become digitalised into the future, there is an expectation that nurses practise the delicate art and science of compassionate caregiving in a technology-proliferated environment where care planning, provisioning, and documenting require digital knowledge and skills. Aim: To explore the perspectives and expectations of nurses working in residential aged care setting regarding the utilisation of technology to enhance care at the end-of-life. Methods: A qualitative descriptive research study design based on the secondary analysis of data collected as part of a larger study. Data collection was conducted using six semi-structured interviews and 11 focus group discussions with care workers, nurses, and nursing managers working in Australian residential aged care setting. Results: A total of 64 participants took part in this study. Overall, four themes were generated from the data as following: engagement with various digital systems and platforms; 2) ambivalence toward technology; 3) challenges and concerns in technology use; and 4) anticipated technology roles in end-of-life care. This study found that, nurses in Australian RAC are open to engage with technologies for end-of-life provision, despite some ambivalence and challenges encountered in the process. Conclusion: Nurses in residential aged care have an important role in end-of-life care of many older Australians. Digital approaches offer care and coordination opportunities however require the aged care sector and nurses to take up these opportunities. While nurses demonstrate openness to technology, focus needs to be placed on technology use support. This presents an opportunity for nurses to actively shape the future of digital innovations in aged care, ensuring high-quality, compassionate care for residents in their final stages of life. [ABSTRACT FROM AUTHOR]

Background: Palliative and end-of-life care (EoLC) education is available to all community and hospital healthcare staff in one NHS trust in the north-east of England. It is also available to care home and domiciliary care staff within the geographical area of the trust. Aims: This service evaluation assessed the effect of current in-house education on staff confidence levels in delivering palliative and EoLC. It also examined staff perceptions of how attendance at these courses impacted on the palliative and EoLC patients receive across the locality. Method: A mixed-methods approach was undertaken. Anonymous data were collected via surveys (n=238) sent out in March 2023 covering educational courses that were delivered from 1 January to 31 December 2022 with a 13% response rate. Quantitative data were analysed using descriptive statistics. Qualitative data were explored using Braun and Clarke's (2012) six-stage approach to thematic analysis. A second staff member was asked to review the data to increase the trustworthiness of the study. Findings: Staff confidence levels in delivering palliative and EoLC increased by 19% (somewhat confident) and 23% (extremely confident) following attendance at trust education. Staff perceived that those patients received better palliative and EoLC as a result their attendance at these courses. The qualitative data identified five main themes: symptom control, psychological support, holistic care, patient advocacy, and advance care planning. Limitations of the study included the low survey response rate and lack of exploration of patient/carer perceptions directly. Conclusion: Palliative and EoLC education can increase staff confidence levels in care delivery and, as perceived by staff, results in better care for patients receiving palliative and EoLC. These findings provide evidence for the trust to consider making palliative and EoLC training mandatory, which could also be considered more widely regionally and nationally. [ABSTRACT FROM AUTHOR]

Purpose: Adolescents and young adults (AYA) with cancer require highly individualized, age-specific end-of-life care. This study identified the characteristics of AYA patients with cancer receiving home-based palliative care and explored their unique needs and challenges compared with other age groups. Methods: This retrospective cohort study analyzed the medical records of AYA patients with cancer to compare home-based palliative care characteristics with those of older age groups. The study included 81 AYA patients with cancer aged 16–39 years who had received home palliative care at a single institution from 2013 to 2023. They were compared with 5,017 patients with cancer aged 40 years and older. Patient background, duration of home end-of-life care, sedation, and association with social factors were examined retrospectively from medical records. Results: The median age of AYA patients with cancer was 34 years; 65.4% were female. The primary cancer sites were gastrointestinal (34.6%) and thoracic (23.5%), with 80.0% at Stage IV. The median home care duration was 28.5 days, shorter than that for older patients (40 days) (p < 0.0001). Home care rates were similar between AYA and older patients (82.4% vs. 79.9%, p = 0.16). Sedation was more common in the 30–39 age group than in the 16–29 group (33.3% vs. 6.3%, p = 0.049). Conclusion: AYA patients with cancer achieved a high rate of end-of-life care at home, although their duration of home care was shorter. The characteristics of home care varied depending on the primary site and age, highlighting the importance of creating highly individualized care plans. [ABSTRACT FROM AUTHOR]

Background: During the COVID‐19 pandemic, intensive care units (ICUs) were under heavy pressure, with a significantly increased number of severely ill patients. Hospitals introduced restrictions, and families could not visit their ill and dying family members. Patients were cared for without privacy, and several died in shared patient rooms, leaving the intensive care nurse to protect the patient's need for loving care in a vulnerable situation at the end of life. Aim: This study aimed to investigate how piloting and watch over were revealed in end‐of‐life care for patients with COVID‐19 in intensive care COVID‐19. Study Design: A qualitative study was conducted with an abductive approach was conducted. Data were collected via semi‐structured interviews to cover the research area while allowing the informant to talk freely about the topic; 11 informants were interviewed. Results: The findings are presented based on four categories: The road to the decision, End‐of‐life care, Farewell of close family members and Closure. Each category and subcategory reveal how piloting and watch over were addressed in the end‐of‐life care of patients with COVID‐19 in the ICU during the pandemic. Overall findings indicated that workload and organization of care directly affect the quality of care given, the acceptance of privacy and the possibility of dignified end‐of‐life care. Conclusions: Workload directly affects the quality of care, risking dehumanization of the patient. Visiting restrictions hindered supporting family members through the various piloting phases. Visiting restrictions also forced the ICU nurses to take on the role of the relative in watching over the patient. Relevance to Clinical Practice: Collaboration with family members is essential for the intensive care nurse to be able to provide a person‐centred and dignified end‐of‐life care. [ABSTRACT FROM AUTHOR]

Background: The "window of opportunity" for intensive care staff to deliver end‐of‐life (EOL) care lies in the timeframe from "documenting the diagnosis of dying" to death. Diagnosing the dying can be a challenging task in the ICU. We aimed to describe the trajectories for dying patients in Danish intensive care units (ICUs) and to examine whether physicians document that patients are dying in time to perform EOL care and, if so, when a window of opportunity for EOL care exists. Methods: From the Danish Intensive Care Database, we identified patients ≥18 years old admitted to Danish ICUs between January and December 2020 with an ICU stay of >96 h (four days) and who died during the ICU stay or within 7 days after ICU discharge. A chart review was performed on 250 consecutive patients admitted from January 1, 2020, to ICUs in the Central Denmark Region. Results: In most charts (223 [89%]), it was documented that the patient was dying. Of those patients who received mechanical ventilation, 171 (68%) died after abrupt discontinuation of mechanical ventilation, and 63 (25%) died after gradual withdrawal. Patients whose mechanical ventilation was discontinued abruptly died after a median of 1 h (interquartile range [IQR]: 0–15) and 5 h (IQR: 2–15) after a diagnosis of dying was recorded. In contrast, patients with a gradual withdrawal died after a median of 108 h (IQR: 71–189) and 22 h (IQR: 5–67) after a diagnosis of dying was recorded. Conclusions: EOL care hinges on the ability to diagnose the dying. This study shows that there is a window of opportunity for EOL care, particularly for patients who are weaned from mechanical ventilation. This highlights the importance of intensifying efforts to address EOL care requirements for ICU patients and those discharged from ICUs who are not eligible for readmission. [ABSTRACT FROM AUTHOR]

Parent-clinician communication is essential for high-quality end-of-life (EOL) care in children with cancer. However, it is unknown how parent-clinician communication affects parents' experience in the first two years after their child's death. To examine the association between communication and prolonged grief among parents whose child died from cancer and to explore the mediation effect of preparation for EOL care. We analyzed data from a cross-sectional survey of parents of children who died from cancer in the prior 6-24 months. We used multiple linear regression to examine the association between communication variables and prolonged grief symptoms. We also examined how preparation for EOL mediates these associations. Across N = 124 parents, the mean age was 46 years, 82% were White, and 64% were mothers. The average PG-13 sum score was 32.7 ± 10.6 (range 11-55, with higher scores indicating greater symptom severity). Most parents reported "very good/excellent" communication with clinicians (80%), adequate prognostic information (64%), and high levels of trust (90%). Nearly 39% of parents reported feeling "not at all prepared" for their child's EOL. Compared to parents who wanted more prognostic information, parents who perceived prognostic information to be adequate had significantly lower PG-13 sum scores (36.4 ± 10.8 vs. 30.5 ± 10.1, F = 9.26, P = 0.003). Preparation for EOL fully mediated this association. Early bereaved parents report severe prolonged grief symptoms. Interventions focused on providing adequate prognostic information and improving preparation for EOL may mitigate parental prolonged grief symptoms in the first two years of their bereavement. [ABSTRACT FROM AUTHOR]

In 2014 the California legislature passed Senate Bill 1004 (SB 1004) that was designed to expand access to specialty palliative care for individuals served by California's Medicaid (known as Medi-Cal) Managed Care Plans (MCPs). The California Department of Health Care Services (DHCS) operationalized the legislation by developing minimum requirements for palliative care programs that all MCPs must meet or exceed. 7 Quality and utilization data specific to California's Medicaid population are needed for stakeholders to identify care deficiencies and disparities, describe the end of life experience and utilization patterns of MCP members, compare these patterns to Medicare beneficiaries or other populations, and set appropriate targets to help monitor progress. We evaluated the feasibility of using Medicaid claims data and encounter data either by partnering with MCPs or by obtaining statewide data from DHCS to measure the quality of palliative care and end of life care. In a concurrent but separate effort, we analyzed administrative data supplied by three MCPs as part of a prospective pilot of standards for home-based palliative care in California, including care delivered to Medicaid beneficiaries under SB 1004. Beyond the practical challenges of allowing time for data access and approvals, both projects revealed several limitations to using administrative data to assess quality of palliative and end of life care for a Medicaid population. We describe these challenges that undermined our confidence in analysis results and propose solutions to measuring the quality of palliative and end of life care for Medicaid patients and suggested next steps. [ABSTRACT FROM AUTHOR]

People with noncancer diagnoses have poorer access to palliative care units (PCUs) or hospices compared to those with cancer diagnoses. The COVID-19 pandemic disrupted how specialist palliative care services were delivered and utilized. To determine the association between the start of the COVID-19 pandemic and PCU/hospice utilization in hospitalized individuals with cancer and noncancer diagnoses with specialist palliative care needs. Retrospective cohort study using routinely collected data. Percentages of individuals experiencing each disposition from hospital, including discharge to PCU/hospice, were calculated monthly for the total, cancer, and noncancer cohorts and were analyzed descriptively. Hospitalized individuals with specialist palliative care needs at a single academic hospital in Toronto, Canada from January 1, 2017, to September 31, 2022 (pandemic start was defined as April 1, 2020). The cohort comprised 4349 individuals (median age=78 years; 52.4% female); 3065 (70.5%) and 1284 (29.5%) had cancer and noncancer diagnoses, respectively. Among individuals with noncancer diagnoses, the most significant absolute changes were a 13.0%-decrease in in-hospital deaths (prepandemic=49.6%; postpandemic=36.6%) and a 11.6%-increase in discharges to PCU/hospice (prepandemic=35.6%; postpandemic=47.3%). Among individuals with cancer, the most significant absolute changes were a 12.8%-increase in discharges home with formal care (prepandemic=2.3%; postpandemic=15.1%) and a 7.0%-decrease in in-hospital deaths (prepandemic=29.1%; postpandemic=22.0%). Despite historically poor PCU/hospice access, the COVID-19 pandemic created circumstances that may have enabled unprecedented utilization in individuals with noncancer diagnoses in our cohort. [ABSTRACT FROM AUTHOR]

Introduction: Clinical guidelines and quality improvement initiatives have identified reducing the use of end‐of‐life cancer therapies as an opportunity to improve care. We examined the extent to which oncologists differed in prescribing systemic therapies in the last 30 days of life. Methods: Using Surveillance, Epidemiology, and End Results–Medicare data, we identified patients who died of cancer from 2012 to 2017 (N = 17,609), their treating oncologists (N = 960), and the corresponding physician practice (N = 388). We used multilevel models to estimate oncologists' rates of providing cancer therapy for patients in their last 30 days of life, adjusted for patient characteristics and practice variation. Results: Patients' median age at the time of death was 74 years (interquartile range, 69–79); patients had lung (62%), colorectal (17%), breast (13%), and prostate (8%) cancers. We observed substantial variation across oncologists in their adjusted rate of treating patients in the last 30 days of life: oncologists in the 95th percentile exhibited a 45% adjusted rate of treatment, versus 17% among the 5th percentile. A patient treated by an oncologist with a high end‐of‐life prescribing behavior (top quartile), compared to an oncologist with a low prescribing behavior (bottom quartile), had more than four times greater odds of receiving end‐of‐life cancer therapy (OR, 4.42; 95% CI, 4.00–4.89). Conclusions: Oncologists show substantial variation in end‐of‐life prescribing behavior. Future research should examine why some oncologists more often continue systemic therapy at the end of life than others, the consequences of this for patient and care outcomes, and whether interventions shaping oncologist decision‐making can reduce overuse of end‐of‐life cancer therapies. We examined the extent to which oncologists differed in prescribing systemic therapies to their patients in the last 30 days of life. Results showed substantial variation in end‐of‐life prescribing behavior, with oncologists in the 95th percentile exhibiting a 45% adjusted rate of treatment, compared to just 17% among oncologists in the 5th percentile. [ABSTRACT FROM AUTHOR]

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

Objective: To explore the incidence of death anxiety in palliative care patients, find some existing and potential causes, and put forward suggestions. Methods: Publication bias, sensitivity analysis, subgroup analysis, and regression analysis were also conducted to explore the sources of the heterogeneity in our analysis. Results: The 607 studies were obtained, and 20 studies were included after reading the articles and quality evaluation. The incidence of death anxiety in patients was 0.44 (95%CI:0.38,0.51, p < 0.001). and heterogeneity was significant (I2 = 98.2%, p < 0.001). In the test of regression analysis, the average age (I2 = 98.15%, R2 = - 6.99%, p < 0.001); in gender (I2 = 97.84%, R2 = 1.14%, p < 0.001), its heterogeneity was also significant. Conclusion: The incidence of death anxiety is relatively high. More often occur in elderly female patients. This requires more attention to life itself rather than death. [ABSTRACT FROM AUTHOR]

This study was planned to determine the relationship between the attitudes of nursing students towards death and dying patients and their empathic tendencies. This study was conducted with a descriptive and correlational design. The research was completed with 176 students. Positive significant relationship found between between the FATCOD and ETS scores. It was observed that a 1-point increase in the Empathic Tendency Scale score caused an increase of 0.502 points in the FATCOD score. İt is recommended providing training sessions with simulation applications for nursing students to prepare them for end-of-life care experiences. [ABSTRACT FROM AUTHOR]

This article addresses experiences of transnational end-of-life care among aging Filipina migrants before and during COVID-19. de Leon addresses the emotional costs associated with loving and losing kin from a distance both before and during the pandemic, drawing on their autobiographical account of distant care by proxy during their aunt's wake and funeral. Blower-Nassiri highlights the exacerbated fears and anxieties around dying, illness, and end-of-life among aging migrants, drawing on two life histories of retired nurses who recalled moments of loss and being absent for end-of-life events, such as funerals, before and during the pandemic. Together, de Leon and Blower-Nassiri provide an intimate portrait of three Filipina migrants' experiences with end-of-life care and loss. They further address the limitations of the life course framework in their consideration of how care carries on, across generations through end-of-life practices and rituals that signal an accrual of loss over time. [ABSTRACT FROM AUTHOR]

Aims: Cancer is a leading cause of death worldwide. Approximately 30% of global cancer-related deaths occur in mainland China. However, there is a paucity of information regarding the end-of-life care-seeking behavior of patients with advanced cancer in China. Our study was to investigate end-of-life care-seeking behavior and to quantify the association between sociodemographic characteristics and the location and pattern of end-of-life care. Methods: We conducted a mortality follow-back survey using caregivers' interviews to estimate the number of individuals pre 1000 who died between 2013 and 2021 in the last 3 months of life. We collected data on hospitalization, outpatient visits, cardiopulmonary resuscitation, palliative care and hospice utilization, and place of death, stratified by age, gender, marital status, household income, residential zone, insurance type, and the primary end-of-life decision-maker of the decedents. Results: We analyzed data from 857 deceased cancer patients, representing an average of 1000 individuals. Among these patients, 861 experienced at least moderate or more severe pain, 774 were hospitalized at least once, 468 received intensive treatment, 389 had at least one outpatient visit, 270 died in the hospital, 236 received cardiopulmonary resuscitation and 99 received specialist hospice care. Conclusions: Our study provides insights into the end-of-life care-seeking behavior of advanced cancer patients in China and our findings serve as a useful benchmark for estimating the use of end-of-life medical care. It highlights the need for the establishment of an accessible and patient-centered palliative care and hospice system. [ABSTRACT FROM AUTHOR]

To describe aggressive treatments at end‐of‐life among inpatients with cancer and non-cancer diseases and to evaluate factors associated with these treatments using the Japanese national database (NDB). We conducted a retrospective cohort study among inpatients aged ≥ 20 years who died between 2012 and 2015 using a sampling dataset of NDB. The outcome was the proportion of aggressive treatments in the last 14 days of life. We considered the underlying causes of death as cancer, dementia/senility, and heart, cerebrovascular, renal, liver, respiratory, and neurodegenerative diseases. We analyzed 54,105 inpatients, with underlying cause of death distributed as follows: cancer, 24.9%; heart disease, 16.5%; respiratory disease, 12.3%; and cerebrovascular disease, 9.7%. The proportion of intensive care unit (ICU) admission was 9.7%, being the highest in heart disease (20.5%), followed by cerebrovascular diseases (12.6%), and least in dementia/senility (.6%). The proportion of cardiopulmonary resuscitation was 19.6%, being the highest in heart disease (38.1%), followed by renal diseases (19.5%), and least in cancer (6.2%). Multivariate logistic regression analysis revealed that having heart diseases, cerebrovascular diseases, younger age, less comorbidities, and shorter length of stay were associated with an increasing risk of aggressive treatments in the last 14 days of life. The proportion of aggressive treatments at the end-of-life varies depending on the disease; additionally, these treatments were associated with having heart diseases, younger age, less comorbidity, and shorter length of stay. Our findings may help develop and set benchmarks for quality indicators at the end‐of‐life for patients with non-cancer diseases. [ABSTRACT FROM AUTHOR]

Background: Although medical aid in dying (MAID) legalization continues to expand across the United States, limited research has elucidated attitudes toward its clinical provision, especially in terms of clinician presence. Objective: The objective of the current study was to explore attitudes toward presence throughout a patient's death via MAID in hospice physicians, nurses, social workers, and chaplains. Aims included (1) characterizing willingness to be present throughout patient death via MAID and (2) describing rationales for willingness. Design: We employed a cross-sectional design. Methods: A national convenience sample of interdisciplinary hospice clinicians in the United States (N = 413) completed a self-administered, mixed-method survey via Qualtrics. A quantitative item assessing participants' willingness (no, unsure, yes) to be present throughout a patient's death via MAID preceded a qualitative probe inquiring about their rationales behind their previous response. Quantitative responses were characterized through frequencies and percentages. Qualitative responses within each resulting quantitative subsample were content analyzed for surface-level meaning using inductive coding. Results: Participants who were willing to be present (n = 305 [74%]) attributed their willingness to personal support, definitions of quality clinical care, and values from their professional training. Some engaged in boundary setting, describing particular conditions under which they would be willing to be present. Those who were unwilling (n = 63 [15%]) noted personal objections to the concept of MAID, personal objections to MAID participation, and perceptions of MAID's misalignment with healthcare. Those who were unsure (n = 45 [11%]) premised their responses on ambivalence and a lack of experience, both of which precluded formulating a definitive position. Conclusion: Although three-quarters of participants were willing to be present during MAID, qualitative responses revealed great nuance within and across quantitative subsamples. Hospice clinicians would benefit from greater professional guidance and support pertaining to MAID. [ABSTRACT FROM AUTHOR]

Background: Effective medication management is crucial for ensuring timely pain and symptom control at the end of life. Dying in pain is a major concern for patients, yet some find less effective pain control at home. Family caregivers (FCGs) play a vital role in managing pain and symptom control for dying patients. However, the experience of administering medications at home for terminal-stage patients has not been widely recognized or understood. Our study aimed to explore the experiences of FCGs in administering medications to adult dying patients. Methods: We conducted a directed content analysis of data from 73 semi-structured interviews with FCGs across 19 Chinese provinces from 2021 to 2023. FCGs were recruited through the Voluntary Cooperative Network Research. We asked, "Could you recall the end-of-life care process for the patients?" We aligned the themes with the five issues identified by Wilson et al. (2018): administration, organizational skills, empowerment, relationships, and support. Results: FCGs in China exhibit concerns about over-engagement and empowerment in medication administration, concealing medication information from the patient, and medication accessibility. FCGs faced significant challenges in accurately identifying and addressing pain and symptoms, determining appropriate dosages, accessing effective medications, and managing the emotional stress associated with potential medication errors. Financial burden, medication regulatory restrictions, geographical inequality, and travel restrictions during COVID impeded patients and FCGs from accessing medication. A culturally specific finding is the use of alternative medicine at the end of life. Conclusion: Our findings build upon Wilson et al.'s framework and extend their insights on empowerment, highlighting the need for policies to support home-based palliative care professionals in training FCGs for effective medication administration. [ABSTRACT FROM AUTHOR]

Background Aim Study design Results Conclusion Relevance to Clinical Practice Education in end‐of‐life care (EoLC) is essential for improving the knowledge, attitudes and behaviours of intensive care nurses.This study aimed to evaluate the effect of online awareness education, based on the End‐of‐Life Nursing Education Consortium, on the knowledge levels, attitudes and behaviours of intensive care nurses.This single‐centre randomized controlled study. This study was performed in a tertiary intensive care unit in a university‐affiliated hospital. Seventy‐six intensive care nurses were selected and equally randomized. In the education, the group was given an EoLC awareness education programme on an online platform as 40–60‐min sessions once a week for 4 weeks. The descriptive Information Form, EoLC Knowledge Test and the Nurses' Attitudes and Behaviours towards the EoLC Scale were used. In the study, intensive care nurses' knowledge, attitude and behaviour levels towards EoLC were evaluated before and after 4 weeks (±3 days) following the education.When the mean post‐education scores of the nurses in the education group were compared with the control group, it was found that their mean scores on the EoLC Knowledge Test (p = .001, Cohen's d = 1.354, 95% CI = 3.240–6.549), the attitude sub‐dimension (p = .001, Cohen's d = 1.520, 95% CI = 4.510–7.858), the behaviour sub‐dimension (p = .001, Cohen's d = 1.425, 95% CI = 3.206–6.214) and the total attitude and behaviour (p = .001, Cohen's d = 1.927, 95% CI = 8.408–13.643) were statistically significantly higher than those of the control group.This study showed that EoLC awareness education positively affected nurses' knowledge, attitudes and behaviours. Accordingly, planning EoLC awareness education online at regular intervals may be recommended for intensive care nurses.Intensive care nurses may be given online EoLC awareness education to positively affect their knowledge, attitudes and behaviours about EoLC. Online EoLC education can be effective in terms of reaching a large number of nurses, time and cost. [ABSTRACT FROM AUTHOR]

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

Context: Health inequities exist across the healthcare continuum, significantly impacting 2SLGBTQIA + individuals. Palliative care presents unique challenges for sexual and gender minorities due to socio-cultural, psychological, and systemic barriers. The objective of this scoping review was to synthesize existing research on palliative care use among 2SLGBTQIA + individuals and identify common themes in the literature. Methods: A literature review was conducted, focusing on articles published between 2010 and 2023 from the PubMed and CINAHL databases. Arksey and O'Malley's methodological framework for scoping reviews was applied to guide the review process. Results: A total of 31 studies were identified. A significant portion of the research originated in North America, with little research from outside the USA. Palliative care and end-of-life care were most used to describe care, though these terms were often not clearly defined. All studies included a focus on sexual and gender minorities, but there was considerable variation in the terminology used and a noticeable paucity of literature specifically addressing the needs of transgender and gender non-conforming individuals, or use of an intersectional approach in analysis. Key themes identified in the literature include discrimination in palliative care settings, disenfranchised grief experienced by care partners, and a lack of training in palliative care settings concerning the unique needs of 2SLGBTQIA + people utilizing palliative care services. Conclusions: People identifying as 2SLGBTQIA + experience unique inequities in accessing and using palliative care services. To address these challenges, future initiatives should focus on developing identity-affirming palliative care settings, enhancing respect and support for care partners and found family, and ensuring healthcare providers are properly educated to provide care to this community. Future research is also needed that considers more diverse samples, as well as the impact of intersecting identities on the specific needs and challenges they face at end-of-life. [ABSTRACT FROM AUTHOR]

Background/Objectives: Multiple sclerosis is characterised by the manifestation of heterogeneous symptoms that affect daily functioning. Patients face physical impairment, psychological problems and socioeconomic changes. Depending on the form of the disease, they may have different needs, which are often unsatisfied and could be overcome by including palliative care in the treatment. Despite the above, not enough is known about this population's needs for palliative care. This cross-sectional study aimed to identify the need for palliative care and assess the functional dependence level in daily living activities in patients with multiple sclerosis. Methods: The sample consisted of 120 patients from the Neurology Clinic of the University Clinical Center of Vojvodina, Serbia. The following research instruments were used: a General questionnaire, Sheffield Profile for Assessment and Referral for Care, Multiple Sclerosis Impact Scale and Barthel Index. Results: The need for palliative care was expressed by 36.7% of patients, who expressed the most concern for the physical symptoms, independence and activity domains. Also, it was determined that the disease prevents patients from doing demanding physical tasks and that they are worried about multiple sclerosis. Almost a quarter of patients have had complete/severe dependence on other persons in performing daily activities. Conclusions: The most frequently reported physical symptoms by patients with MS were weakness, bladder problems, fatigue and different levels of dependence, while concerns related to sexual health, low mood and anxiety emerged as key challenges in the psychological domain. These findings underscore the importance of conducting needs assessments to guide the development of an appropriate palliative care model for MS patients. [ABSTRACT FROM AUTHOR]

Background: At present, there are no specific guidelines for the treatment of diabetes in palliative care in Norway. The aim of this study was therefore to explore healthcare professionals' experiences of providing palliative care to individuals with diabetes in specialist as well as primary care settings. Methods: We interviewed 12 healthcare professionals from two palliative care units in specialist healthcare, one hospice unit in a nursing home, and one dietary care unit providing counselling in the municipality in the eastern part of Norway. Thematic analysis was used to analyze the data. Results: Our analysis generated three main themes: 1) "Quality of life is the main focus", which showed that the healthcare professionals' main focus was on comforting patients through engagement and communication; 2) "An individualized approach", emphasizing that the treatment was tailored to the unique circumstances of each individual and considered factors such as life expectancy, difficult blood glucose control, and multidisciplinary collaboration, and 3) "Diabetes in the background", which highlighted that they had a modest focus on diabetes. Diabetes was seen as another aspect of health that they had to be aware of, but their limited knowledge of diabetes guidelines, technical tools, and treatment choices underscored that attentiveness to the diabetes treatment was not prominent. Conclusion: The findings show that a lack of guidelines allowed for diverse approaches to the treatment of patients with diabetes in palliative care. Attentiveness to diabetes was based on the individual healthcare professionals' experience and expertise, professional views, and the circumstances of each individual. [ABSTRACT FROM AUTHOR]

Background: The development of controlled donation after circulatory death (cDCD) is both important and challenging. The tension between end-of-life care and organ donation raises significant ethical issues for healthcare professionals in the intensive care unit (ICU). The aim of this prospective, multicenter, observational study is to better understand ICU physicians' and nurses' experiences with cDCD. Methods: In 32 ICUs in France, ICU physicians and nurses were invited to complete a questionnaire after the death of end-of-life ICU patients identified as potential cDCD donors who had either experienced the withdrawal of life-sustaining therapies alone or with planned organ donation (OD(-) and OD(+) groups). The primary objective was to assess their anxiety (State Anxiety Inventory STAI Y-A) following the death of a potential cDCD donor. Secondary objectives were to explore potential tensions experienced between end-of-life care and organ donation. Results: Two hundred six ICU healthcare professionals (79 physicians and 127 nurses) were included in the course of 79 potential cDCD donor situations. STAI Y-A did not differ between the OD(-) and OD(+) groups for either physicians or nurses (STAI Y-A were 34 (27–38) in OD(-) vs. 32 (27–40) in OD(+), p = 0.911, for physicians and 32 (25–37) in OD(-) vs. 39 (26–37) in OD(+), p = 0.875, for nurses). The possibility of organ donation was a factor influencing the WLST decision for nurses only, and a factor influencing the WLST implementation for both nurses and physicians. cDCD experience is perceived positively by ICU healthcare professionals overall. Conclusions: cDCD does not increase anxiety in ICU healthcare professionals compared to other situations of WLST. WLST and cDCD procedures could further be improved by supporting professionals in making their intentions clear between end-of-life support and the success of organ donation, and when needed, by enhancing communication between ICU physician and nurses. Trial registration: This research was registered in ClinicalTrials.gov (Identifier: NCT05041023, September 10, 2021). [ABSTRACT FROM AUTHOR]

Providing timely and satisficing End-of-Life care (EOLC) is a priority for healthcare systems since aging population and chronic diseases are boosting the global demand for care at end-of-life (EOL). In OECD countries the access to EOLC is insufficient. In Italy, the average rate of cancer patients assisted by the palliative care (PC) network at EOL was 28% in 2021, with high variability in the country. Among the Italian regions offering the best coverages, Tuscany has a rate of about 40%, but intraregional variation is marked as well. The study aims to explore the delivery of EOLC to adult cancer patients in public facilities in the Tuscany region through survey data collection among professionals. Two online surveys were delivered to Directors of community-based PC Functional-Units (FUs) and Directors of hospital-based medical-oncology units. All FU Directors responded to the survey (n = 14), and a response rate of 96% was achieved from hospital-unit Directors (n = 27). The results highlight the availability of numerous dedicated services, but reveal heterogeneity among and within organisations, including variations in the professionals involved, pathways, and tools adopted. Care continuity is supported by institutionalized collaboration between hospital and community settings, but hindered by fragmented care processes and heterogeneous transition pathways. Late referral to PC is perceived as a major constraint to EOLC. Developing structured pathways for patient transition to end-stage PC is crucial, and practices/processes should be uniformly implemented to ensure equity. Multi-professional care should be facilitated through tailored supporting tools. Both hospital-unit and FU Directors suggest developing shared pathways between organisations/professionals (82% and 80% respectively) and digital information sharing (61% and 80% respectively). Hospital and community-based professionals have similar perceptions about the concerns and challenges to EOLC provision in the region, but community-based professionals are more sensitive to the importance of improving communication on PC to the public and early discussing EOLC with caregivers. This finding suggests the need of enhancing hospital personnel's awareness about these issues. Professional training and the capacity to assess patients' needs and preferences should be improved. The identified needs can inform future research and interventions to improve the quality and outcomes of EOLC for cancer patients. [ABSTRACT FROM AUTHOR]

Background End-of-life periods are often characterised by suboptimal healthcare use (HCU) patterns in persons aged 65 years and older, with negative effects on health and quality of life. Understanding care trajectories (CTs) and transitions in this period can highlight potential areas of improvement, a subject yet only little studied. Objective To propose a typology of CTs, including care transitions, for older individuals in the 2 years preceding death. Design Retrospective cohort study. Methods We used multidimensional state sequence analysis and data from the Care Trajectories—Enriched Data (TorSaDE) cohort, a linkage between a Canadian health survey and Quebec health administrative data. Results In total, 2080 decedents were categorised into five CT groups. Group 1 demonstrated low HCU until the last few months, whilst group 2 showed low HCU over the first year, followed by a steady increase. A gradual increase over the 2 years was observed for groups 3 and 4, though more pronounced towards the end for group 3. A persistent high HCU was observed for group 5. Groups 2 and 4 had higher proportions of cancer diagnoses and palliative care, as opposed to comorbidities and dementia for groups 3 and 5. Overall, 68.4% of individuals died in a hospital, whilst 27% received palliative care there. Care transitions increased rapidly towards the end, most notably in the last 2 weeks. Conclusion This study provides an understanding of the variability of CTs in the last two years of life, including place of death, a critical step towards quality improvement. [ABSTRACT FROM AUTHOR]

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

Background: Significantly fewer individuals with migration backgrounds than native-born individuals undertake advance care planning. Older adults with Turkish and Moroccan backgrounds represent one of the largest ageing non-Western minority groups in Europe. Their relatives could play important roles in facilitating or hindering advance care planning, but their views remain underexplored. Aim: To explore advance care planning knowledge, experience, views, facilitators and barriers among older Turkish and Moroccan adults' relatives in Belgium. Design: Qualitative thematic analysis of semi-structured interview data. Setting/participants: Twenty-two relatives of older Turkish and Moroccan adults in Brussels, Mechelen and Antwerp, recruited via general practitioners. Results: Participants had limited advance care planning knowledge and had not discussed it with healthcare professionals. Some found discussing end-of-life preferences with relatives beneficial; others opposed the discussion of specific topics or felt discussions were unnecessary, as they felt responsible for caregiving and trusted by their relatives to make future decisions. Barriers included personal and relational characteristics, emotional difficulty and perceived non-urgency. Facilitators included information in older adults' native languages, general practitioners' cautious initiation and the involvement of several family members. Conclusions: Relatives of older people with Turkish and Moroccan backgrounds are unfamiliar with advance care planning and have highly variable views on it. People should be given opportunities to discuss advance care planning in a culturally appropriate manner, and the diversity of perspectives regarding whether and how to engage in such planning should be recognised. ClinicalTrials.gov no. NCT05241301. [ABSTRACT FROM AUTHOR]

Background: Heart failure is a leading cause of death in the USA, contributing to high expenditures near the end of life. Evidence remains lacking on whether billed advance care planning changes patterns of end-of-life healthcare utilization among patients with heart failure. Large-scale claims evaluation assessing billed advance care planning and end-of-life hospitalizations among patients with heart failure can fill evidence gaps to inform health policy and clinical practice. Objective: Assess the association between billed advance care planning delivered and Medicare beneficiaries with heart failure upon the type and quantity of healthcare utilization in the last 30 days of life. Design: This retrospective cross-sectional cohort study used Medicare fee-for-service claims from 2016 to 2020. Participants: A total of 48,466 deceased patients diagnosed with heart failure on Medicare. Main Measures: Billed advance care planning services between the last 12 months and last 30 days of life will serve as the exposure. The outcomes are end-of-life healthcare utilization and total expenditure in inpatient, outpatient, hospice, skilled nursing facility, and home healthcare services. Key Results: In the final cohort of 48,466 patients (median [IQR] age, 83 [76–89] years; 24,838 [51.2%] women; median [IQR] Charlson Comorbidity Index score, 4 [2–5]), 4406 patients had an advance care planning encounter. Total end-of-life expenditure among patients with billed advance care planning encounters was 19% lower (95% CI, 0.77–0.84) compared to patients without. Patients with billed advance care planning encounters had 2.65 times higher odds (95% CI, 2.47–2.83) of end-of-life outpatient utilization with a 33% higher expected total outpatient expenditure (95% CI, 1.24–1.42) compared with patients without a billed advance care planning encounter. Conclusions: Billed advance care planning delivery to individuals with heart failure occurs infrequently. Prioritizing billed advance care planning delivery to these individuals may reduce total end-of-life expenditures and end-of-life inpatient expenditures through promoting use of outpatient end-of-life services, including home healthcare and hospice. [ABSTRACT FROM AUTHOR]

Death on the intensive care unit (ICU) is common. As with any condition, it is important that the clinician recognizes when a patient is close to death and alters management towards end-of-life care (EoLC). This allows a good death through ensuring patient comfort and dignity while supporting the family. The main obstacle in allowing a good death being the failure to recognize patients who are approaching the end of their life. This leads to prolonged suffering and needless distress for the family and the patient. The same quality of care that supported the patient before EoLC should continue until they die. The correct process is a clinical skill with the foundations being communication and timing. Managed correctly, the patient's family will have positive memories of not only the death but of the person who has died and the care they received. Guidance from the General Medical Council (GMC) is clear and written to protect the patient and the physician. This article includes the updated guidance (2022) from the GMC and will detail the process involved. Relevant aspects of the legal framework and most recent guidelines are included to inform the physician of what to do and what not to do. Examples of patients who die on the ICU are given to illustrate these points resulting in a good death or a bad death. [ABSTRACT FROM AUTHOR]

The Competencies and Recommendations for Educating undergraduate Nursing Students (CARES) was originally designed for nursing students' palliative and end-of-life care education. The competencies were later revised to align with the 2021 American Association of Colleges of Nursing Essentials core competencies for baccalaureate nursing education. This project aimed to (1) review the courses in an accelerated baccalaureate nursing program for alignment with CARES, (2) determine any gaps, and (3) make program recommendations. The CARES competencies and Essentials were mapped according to the nursing program's 12 core curriculum courses and evaluated. Three CARES competencies were not met, and 12 were partially met. Areas of improvement were identified across the curriculum. Results of the mapping included palliative concepts needing earlier program introduction, reflective journaling was recommended for clinical practice courses, and incorporation of palliative care simulations was proposed to bridge the gaps. [ABSTRACT FROM AUTHOR]

Little is known about community-based transitions to home hospice care. We used a Straussian grounded theory approach to understand the basic social process of care transitions that patients and their caregivers use when electing hospice care. Participants were recruited from hospice agencies serving 3 counties in New York State. Data were collected through 7 interviews of patients, patient-and-caregiver dyads, and a hospice nurse (n = 10). Data were analyzed using the constant comparative method. Our results generated an emerging grounded theory of the hospice care transition processes rooted in maintaining personhood and autonomy. There were 5 contemporaneous steps: (1) recognizing futility and pursuing comfort; (2) seeking help and input as health declines; (3) shopping for the right services, overcoming obstacles, and self-referring to hospice care; (4) attending to the business of dying while living; and (5) processing and expressing emotions. Although not central to the care transition process, an additional step was identified that occurred after the transition to hospice care: planning for an uncertain future. The hospice care transition process identified in the study reveals important mechanistic targets for the development of interventions that promote patient-centered hospice care transitions in the home setting. [ABSTRACT FROM AUTHOR]

Purpose: This viewpoint paper focuses on the important role played by hospices in the UK in providing specialised end-of-life care for older people with complex needs – particularly for the growing number who choose to die at home. With demand for such care growing, the paper highlights the funding issues facing the independent hospice sector and the implications for hospices of receiving more state funding. The purpose of this paper is to highlight the challenges that hospices in the UK face in providing home-based palliative and end of life care for older people. Design/methodology/approach: This a viewpoint paper informed by recent reports and research findings, as well as the author's own work within the hospice sector. Findings: The demand for specialised community-based and home-based palliative and end-of-life care is growing. The Covid-19 pandemic prompted wider discussion about what constitutes both "a good death" and good end-of-life care. This confirmed that most older people would prefer to end their lives free from pain, in familiar surroundings and not in hospital. Practical implications: The specialised end-of-life care provided by hospices is rated highly by the regulator and the communities which they serve. In recent years, more attention has been given to providing "hospice at home" services, but coverage is limited largely due to lack of funding, the bulk of which comes from charitable fundraising. To provide a more equitable service, the fragility of the hospice funding model needs to be addressed. Social implications: If the state expands its funding of hospice care, it is important that charitable fundraising also continues to take place and is encouraged. This will help ensure that the good links between hospices and local stakeholders are maintained. Originality/value: The funding of the hospice sector in the UK has been the subject of several reports both by governmental and non-governmental bodies, several in the last year. However, it is an issue of growing importance and the whole subject needs a fuller airing in academic circles. [ABSTRACT FROM AUTHOR]

Background/Aims: End-of-life care is a targeted area of healthcare service reform. Complaints are increasingly recognised as a valuable source of evidence for evaluating practice and informing service improvement work. This project aimed to develop a tool to support the standardised coding, categorisation and organisational use of formal complaint data concerning end-of-life care for adults. Methods: A service evaluation was conducted using existing data. Deductive analysis was conducted with 59 letters of formal complaint submitted to an NHS trust in the Midlands, UK. A published healthcare complaints analysis tool served as a thematic framework for use in conjunction with framework analysis. The project was carried out in two stages: the first comprised preliminary work to produce a template of end-of-life care concerns; the second involved pilot testing the face validity of the template when used as a coding and categorising scheme. Results: An initial template of 20 subcategories of end-of-life care concerns were developed from the data during preliminary work. This template was deemed to enable the analyst to focus on predefined areas of interest, organise concerns into relevant themes, concisely present the data in a summarised form and provide meaningful objective conclusions. During pilot testing, 185 complainant concerns were coded and categorised, over half of which fell into the domain of 'relationship problems' (n=99; 53.5%). Within this domain, the most common problem categories were 'communication' (n=44) and 'respect and rights' (n=44). A total of five new subcategory concerns were also derived and added to the template. Collectively, the outcomes of complaint data analysis informed the structure of a dedicated end-of-life care complaint analysis tool comprising 25 subcategories of end-of-life care concerns and accompanying exemplar indicators, together with criteria that were meaningful to identifying the context of the care concerns. Conclusions: A systematic approach to analysing and reporting complainants' experiences of end-of-life care has the potential to support organisational learning, quality monitoring and bespoke service improvements in response to collective complaints and concerns. [ABSTRACT FROM AUTHOR]

Introduction: Advance directives (ADs) promote patient autonomy in end-of-life (EOL) care, including an individual's EOL medical treatment preferences. This study aims to better understand preferences regarding EOL medical treatment among community-dwelling adults (18 and older) residing in the United States and examine the association between sociodemographic characteristics and EOL medical treatment preferences. Methods: Utilizing a cross-sectional study and snowball sampling methodology, community-dwelling adults completed a survey containing two different ADs and a questionnaire with sociodemographic information. Univariate analyses were used to summarize EOL medical treatment preferences among the sample, and bivariate analyses (Chi-square and Fisher's Exact tests) were performed to examine the association between sociodemographic characteristics (age, gender, and race/ethnicity) and EOL medical treatment preferences. Results: The mean age of the 166 participants was 50 (SD: 21.65, range: 18-93), with 58.4% being White and 61.4% being female. Generally, when EOL scenarios involved brain damage or a coma, more participants indicated that they did not want life-support treatment. Age and race were both associated with EOL medical treatment preferences, but no significant differences were observed in the bivariate results by gender. Largely, young and middle-aged adults, along with Black participants, were more likely to prefer more aggressive EOL medical treatments than older adults and White participants. Conclusion: Overall, EOL medical treatment preferences varied among participants. The study findings indicate that adults develop different preferences for EOL medical treatment, with some of the variation attributable to sociodemographic characteristics such as age and race. [ABSTRACT FROM AUTHOR]

Background: Symptoms of emotional and physical stress near death may be related to previous experiences of trauma. Objective: To investigate current evidence regarding the following: (1) Is previous trauma identified in people who are dying, and if so, how? (2) How is previous trauma associated with the experience of death/dying in people with or without cognitive impairment? and (3) What palliative care interventions are available to people with previous trauma at the end of life? Design: This integrative review was conducted per Whittemore and Knafl's guidelines, which involves a stepped approach, specifically (1) problem identification, (2) literature search, (3) data evaluation, (4) data analysis and (5) presentation. Methods: This integrative review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. Electronic databases were searched in August 2021 and updated in August 2023. The articles were quality appraised, and narrative data were analysed using Grounded Theory (GT). Results: Of 1310 studies screened, 11 met the inclusion criteria (four qualitative and seven quantitative) conducted in Australia, Canada, Japan and the United States; and American studies accounted for 7/11 studies. Eight were focused on war veterans. Descriptive studies accounted for the majority, with only two publications testing interventions. Re-living trauma near death has additional features to a diagnosis of post-traumatic stress disorder alone, such as physical symptoms of uncontrolled, unexplained acute pain and this distress was reported in the last weeks of life. Conclusion: This study proposes that re-living trauma near death is a recognisable phenomenon with physical and psychological impacts that can be ameliorated with improved clinical knowledge and appropriate management as a new GT. Further research is needed to enable past trauma identification at the end of life, and trauma-informed safe interventions at the end of life are an urgent need. [ABSTRACT FROM AUTHOR]

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

In the wake of recent medical developments in small animal practice, curing animals of their illnesses and restoring their health can be realized better than ever before. However, the growing medical possibilities are also leading to an increase in demand for better care for patients suffering from terminal illnesses. Consequently, the field of animal hospice and palliative care has become increasingly available, enabling veterinarians to optimize the quality of life of patients, such as dogs and cats, who no longer have a prospect of full recovery. Using qualitative, semi-structured interviews with 20 small animal veterinarians involved in hospice and palliative care, we investigated the factors that motivate veterinarians to become involved in hospice and palliative care and explored the importance of relationships, communication, time and infrastructure in this area. Findings show that personal experiences with their own pets or during training or work life motivated veterinarians to provide this service. Although veterinarians highlighted the importance of empathetic-driven relationships, they were aware that keeping an emotional distance from the patient and caregiver is significant to provide successful care. Further, veterinarians emphasized their high investment of time that resulted primarily from the increased frequency and provided opportunities to communicate with caregivers. The overall conclusion is that having time for patients and the patients' caregivers is one of the most important aspects of work in this field. However, as it will be also shown, veterinarians must consider aspects of self-care management by reflecting on their own time and energy resources while caring for animals and their caregivers. [ABSTRACT FROM AUTHOR]

Background: Palliative care provided to frail and dying older persons in nursing homes results in intense emotions for residents and their relatives as well as for healthcare professionals. In France, scant attention has been given to how nursing home professionals manage their emotions when providing palliative care. This study analysed the emotional demands of providing palliative care in the nursing home context, the emotional strategies used by healthcare professionals to navigate such demands, and how these demands affect their emotional wellbeing. Methods: This qualitative study used a multiple case study approach. We purposively selected nine nursing homes from three geographical provinces in France with diverse ownership statuses (public, private, associative). Individual interviews and focus group discussions were held with 93 healthcare professionals from various occupational groups employed in the participating nursing homes. Data was collected from April 2021 to September 2022 and was analysed using thematic content analysis. Results: Data revealed that providing palliative care to dying residents within the nursing home context results in intertwined rewarding and exhausting emotional experiences for healthcare professionals. Professionals have to utilize multifaceted emotional strategies to navigate these experiences, including suppressing and modifying emotions and distancing themselves emotionally from residents to protect themselves from emotional suffering. Participants noted a lack of formal space to express emotions. Unrecognized emotional labour undermines the wellbeing of healthcare professionals in nursing homes, whereas acknowledging emotions enhances satisfaction and gives enhanced meaning to their crucial role in resident care. Conclusion: Acknowledging emotional labour as an inevitable component of providing palliative care in nursing homes is critical to supporting healthcare professional wellbeing, resilience, and retention, which may ultimately improve the quality of care for dying residents. Ensuring quality care and supporting the emotional wellbeing of nursing home professionals requires an organisational culture that considers emotional expression a collective strength-building resource rather than an individual responsibility, in hopes of shaping a new culture that fully acknowledges their humanity alongside their professional skills. Trial registration: ClinicalTrials.gov ID: NCT04708002; National registration: ID-RCB number: 2020-A01832-37, Registration date: 2020-12-03. [ABSTRACT FROM AUTHOR]

Background: A Strategic Guiding Council (SGC) was created within a Family Carer Decisions Support study, to engage family carers of persons with advanced dementia as advisors to inform the design and implementation of the study. The SGC consists of an international group of family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, and the Czech Republic. There are limited studies that have explored the integration of Patient and Public Involvement (PPI) in dementia research, end-of-life care and long-term care. Therefore, this study explores PPI engagement in health research with family carers to understand further their interest in being involved in the SCG within the FCDS intervention which is focused on supporting caregivers to make decisions about end-of-life care for residents with advanced dementia. Methods: This study utilized an interpretive descriptive design and explored the motivations of ten family advisors from Canada, the Republic of Ireland, the United Kingdom, and the Netherlands in being part of the SGC. Semi-structured interviews were conducted by phone or videoconferencing and were recorded, transcribed, and analyzed using thematic analysis. Results: Three themes generated from the findings of the study were (1) engaging in reciprocal learning; (2) using lived experience to support other family carers; and (3) creating a collective momentum for advocacy and change. Conclusions: Family carers motivations to being part of the SCG was driven by their intent to help carers navigate the health system and to create a psychosocial support system for other carers experiencing end-of-life with their loved ones. Being part of the SCG provided a benefit to family carers which provided a venue for them to contribute meaningful information from their experience, learn from other health professionals, research and other advisors and an avenue for advocacy work to improve access to end-of-life care supports through education. To our knowledge, this is the first study that explores the motivations of an international group of family advisors' engagement in health research to promote integration of a palliative approach to dementia care in long-term care homes. This study further contributes to the literature from an international perspective the importance of PPI in research. Further research is warranted that explores PPI in research to improve access to end-of-life supports. Plain English summary: Patient and public involvement (PPI) in research has been growing worldwide and ensures that research conducted is relevant to the needs of patients. Within the Family Carer Decisions Support study, we created a Strategic Guiding Council (SGC) to engage family carers of persons with advanced dementia as advisors to improve access to a palliative approach to care. The SGC includes family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, Italy and the Czech Republic. The goal of the strategy was to engage with family advisors in research activities to improve access to a palliative approach and quality of care provided to people with dementia receiving end-of-life care. Including patients and family in research is extremely important, therefore our aim in this study was to explore family advisors' motivations to engaging in the SGC. Family advisors reported encountering challenges with navigating the health system with end-of-life care and they chose to participate in the SGC to support other carers who are experiencing a similar situation. Being part of the SGC also provided the family advisors with an avenue to advocate on the importance of improving access to end-of-lifesupports and the opportunity to learn from other advisors, health professionals and researchers. [ABSTRACT FROM AUTHOR]

Background: For people with limited lifetime expectancy, the benefit of many medications may be outweighed by their potential harms. Despite the relevance of reducing unnecessary medication use, deprescribing is poorly enacted in primary care practice. Aim: This study aims to describe factors, as identified by primary care professionals and patients, that influence deprescribing in the last phase of life. Design: Semi-structured interviews were conducted and analysed using a thematic approach. Setting/participants: This study was performed in primary care settings, including general practices, hospices and community care teams in The Netherlands. Purposefully identified primary care professionals (general practitioners, pharmacists, nurses) and patients with limited lifetime expectancy due to advanced chronic illness or cancer and their caretakers were interviewed. Results: Three themes emerged detailing factors influencing deprescribing in the last phase of life in primary care: (1) non-maleficence, the wish to avoid additional psychological or physical distress; (2) reactive care, the lack of priority and awareness of eligible patients; and (3) discontinuity of care within primary care and between primary care and specialty care. Conclusions: Deprescribing is an incremental process, complicated by the unpredictability of life expectancy and attitudes of patients and health care professionals that associate continued medication use with clinical stability. Opportunities to facilitate the deprescribing process and its acceptance include the routinely systematic identification of patients with limited life expectancy and potentially inappropriate medications, and normalisation of deprescribing as component of regular primary care, occurring for all patients and continuing into end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Avoiding futile treatment for patients at the end of life is among one of the care challenges of nurses in intensive care units (ICUs). Aims: This study aimed to determine the attitude of intensive care unit nurses toward futile treatment and its relationship with missed care for patients at the end of life. Method: This cross-sectional study was conducted on 307 ICU nurses. Eleven teaching hospitals were selected from three Iranian provinces, Zanjan Province, East Azerbaijan and West Azerbaijan, in 2021. The data were collected using The Attitudes Toward Futile Treatment Scale (ATFTS) and The Missed Nursing Care Survey (MISSCARE Survey) as self-reports. Results: According to the obtained results, 94.8% of the nurses agreed that futile treatment should not be performed. However, 97.7% of the nurses reported that missed care occurs less for patients at the end of life. The correlation between the MISSCARE Survey's total scale and the ATFTS's total scale was positive and statistically significant (r =.11). Conclusion: This research contributes to understanding nurses' attitudes toward futile treatment. Nurses oppose futile treatment, so obstacles to avoiding it should be eliminated. This attitude does not have a significant impact on nursing care quality or missed care for patients at the end of life, but it can lead to enduring distress for nurses. It is recommended to study the reasons for futile treatment, and its link to nurses' mental and physical health. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is an integral part of good quality end-of-life care. This study aimed to explore the role and practice of ACP among health and social care professionals (HSCPs) in a community long-term care facility. Methods: This was a mixed-methods study. The study purposefully sampled 12 HSCPs from one community long-term care facility in Macao, China. All data were collected in November 2022. Results: Some participants had discussed with terminally ill residents or with families in terms of end-of-life care preferences, the average correct rate of ACP knowledge was 67.4%. Interview data showed that HSCPs were primarily concerned with information-giving. The responsibility of decision-making was found to have been placed predominantly on family members of the residents. Conclusion: Study findings raised awareness in that the execution of ACP has remained in discord with the expectations in practicing ACP. The study illuminated that the perceived sense of responsibility among HSCPs was influenced by the potential legal risks involved and consequentially impacted on the adherence to individual's decisions. [ABSTRACT FROM AUTHOR]

Background: To operationalize the palliative care approach and improve care across services, a palliative care pathway (PCP) was developed in Western Norway. The PCP is an evidence-based framework for palliative care assessment and interventions in the form of a web-based flowchart. Measures: An electronic questionnaire aimed at health care professionals (HCPs) examined perceived usability and content. We registered PCP webpage activity and conducted an evaluation seminar and group interviews. Intervention: The pathway was developed (2015) and piloted in two cities (2017–2018/2020). Outcomes: HCPs perceived that the PCP contributed to increased palliative care knowledge and skills and worked as a reference and educational tool. They found the PCP easily accessible but asked for a search option and easier webpage navigation. Conclusions/Lessons Learned: An available PCP can support a common language for palliative care in different settings and enhance patient-centered care. HCPs need time to familiarize themselves with its content and use. [ABSTRACT FROM AUTHOR]

Background: Palliative care, a cornerstone of comprehensive healthcare, prioritizes quality of life for individuals with life-threatening illnesses. Aromatherapy, with its holistic approach and patient-reported benefits, emerges as a promising complementary therapy for managing symptoms and enhancing well-being in palliative care. Objective: The objective of this systematic review is to assess the efficacy of aromatherapy interventions in symptom management, with a focus on pain, anxiety, nausea, and sleep disturbances among palliative care patients. Design: A comprehensive search was conducted across various databases to identify relevant studies. Eligibility criteria were applied, resulting in the inclusion of eight studies for analysis. The review assessed the efficacy of aromatherapy interventions, primarily through massage, in symptom management. Variations in intervention procedures and outcome measures were noted, necessitating a critical examination of the findings. Results: The review's findings suggest promising outcomes associated with aromatherapy in palliative care. Aromatherapy interventions demonstrated significant efficacy in reducing pain, anxiety, nausea, and improving sleep quality among patients. However, considerable heterogeneity was observed across studies, highlighting the need for standardized methodologies and larger-scale trials. Conclusion: This systematic review underscores the potential of aromatherapy as a complementary intervention in palliative care. While the findings support its efficacy in symptom management, methodological inconsistencies across studies warrant further research. Standardized approaches and larger trials are essential to validate the tailored effectiveness of aromatherapy for different symptoms encountered in palliative care, ultimately enhancing its clinical utility and integration into therapeutic practices. [ABSTRACT FROM AUTHOR]

Background: The importance of high-quality care for terminal patients is being increasingly recognized; however, quality of care (QOC) and quality of death and dying (QOD) for noncancer patients remain unclear. Objectives: To clarify QOC and QOD according to places and causes of death. Design, Subjects: A nationwide mortality follow-back survey was conducted using death certificate data for cancer, heart disease, stroke syndrome, pneumonia, and kidney failure in Japan. The questionnaire was distributed to 115,816 bereaved family members between February 2019 and February 2020. Measurements included QOC, QOD, and symptoms during the last week of life. Analyses used generalized estimating equations adjusting for age, sex, and region. Results: Valid responses were returned by 62,576 (54.0%). Family-reported QOC and QOD by the place of death were significantly higher at home than in other places across all causes of death (for all combinations with hospital p < 0.01). In stroke syndrome and pneumonia, QOD significantly differed between hospital and home (stroke syndrome: 57.1 vs. 72.4, p < 0.001, effect size 0.77; pneumonia: 57.3 vs. 71.1, p < 0.001, effect size 0.78). No significant differences were observed in QOC and QOD between cancer and noncancer. The prevalence of symptoms was higher for cancer than for other causes of death. Conclusions: QOC and QOD were higher at home than in other places of death across all causes of death. The further expansion of end-of-life care options is crucial for improving QOC and QOD for all terminal patients. [ABSTRACT FROM AUTHOR]

Background and Purpose: Patients with advanced noncancer diseases or advanced cancer diseases may experience similar symptom burdens during the end of their lives. This study aimed to evaluate the differences in receiving hospice care service and in receiving aggressive end-of-life care between patients who died of cancer diseases and those who died of noncancer diseases. Methods: This cross-sectional population-based study used data from the Taiwan National Health Insurance Research Database. Subjects who died of cancers or noncancer diseases from 2010 through 2019 were analyzed to identify the information on patient's characteristics, receipt of hospice care service, receipt of cardiopulmonary resuscitation (CPR) during the last hospitalization, and receipt of airway support interventions during the last hospitalization. The independent effects of various characteristics on the receipt of hospice care, CPR during the last hospitalization, and airway support interventions during the last hospitalization were evaluated using multivariate logistic regressions. Results: A total of 587,490 patients were included, of which 434,142 died of cancers and 153,348 died of noncancer diseases. There were significant trends of increase in receiving hospice care service and significant trends of decrease in receiving CPR or airway support interventions during the last hospitalization in both patients who died of cancers and those who died of noncancer diseases. Compared with patients who died of cancers, those who died of noncancer diseases were less likely to receive hospice care service (adjusted odds ratio [AOR]: 0.087; 95% confidence interval [CI]: 0.085–0.089) and had a higher risk of receiving CPR (AOR: 3.610; 95% CI: 3.521–3.704) or airway support interventions during the last hospitalization (AOR: 3.086; 95% CI: 3.021–3.165). Conclusions: Hospice care service should be promoted for all patients with end-stage diseases especially those with noncancer diseases. [ABSTRACT FROM AUTHOR]