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Objective: Protocol to explore what is known about communication between critical care providers and patients and families from culturally and linguistically diverse backgrounds (defined as people who are either from minority ethnic groups, non-English-speaking backgrounds who may have diverse cultural, linguistic, spiritual and religious affiliations and opinions) about death, dying, end-of-life care and organ donation in the intensive care unit (ICU)., Introduction: Patients from culturally and linguistically diverse backgrounds experience barriers to optimised care when admitted to the ICU. These barriers appear to derive from differences in language, cultural, societal and ethical expectations between patients, their families and healthcare professionals. These barriers may significantly impact the delivery of end-of-life care to patients from culturally and linguistically diverse backgrounds. Therefore, this has the potential for inadequate management of medical, psychological and existential distress., Inclusion Criteria: Studies of all designs reporting for adult (age ≥18 years) patients and family members from culturally and linguistically diverse backgrounds at end-of-life in the ICU setting will be included. Studies that report results for patients aged <18 years or that are based outside the ICU will be excluded., Methods: Relevant sources will be retrieved, and their citation details will be imported into the Joanna Briggs Institute (JBI) System for the Unified Management, Assessment and Review of Information. This scoping review was guided by the JBI methodology for scoping reviews and reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines. A systematic search was conducted in EBSCOhost, Web of Science, PubMed Central and SciELO, OVID Medline, CINAHL, and Scopus, limited to English-language publications, without date limitation. Key study characteristics and findings will be extracted using a data extraction tool developed by the reviewers. Anticipating heterogeneous study designs, findings will be presented as a thematic synthesis., Ethics and Dissemination: This is a protocol for a scoping review, formal ethics approval from the Human Research Ethics Committee (HREC) of the Local Health Network will be obtained for research projects that could potentially stem from this review and will then be subsequently disseminated through proper channels., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: This study aims to determine the frequency of falls and their serious complications in palliative care units (PCUs), as well as explore the complex interplay between falls, independence and quality of dying., Design: A prospective cohort study., Setting and Participants: The dying process of patients with advanced cancer in 23 PCUs in Japan., Outcome Measures: Palliative care specialist physicians recorded whether patients experienced falls, serious complications from falls, activities that led to falls, independence (workability in the last days and use of indwelling urinary catheter) and Good Death Scale as an indicator of quality of dying., Results: Of the 1633 patients evaluated, 150 patients (9.2%; 95% CI 7.8% to 11%) experienced falls within 30 days prior to death. The patients who fell were mostly men, had Eastern Cooperative Oncology Group performance status 3 on admission, a longer estimated prognosis on admission and delirium during hospitalisation. Serious falls causing fractures or intracranial haemorrhages were rare in five patients (0.3%; 95% CI 0.038% to 0.57%). The most common reason for falls was the need to use the toilet (64.7%). The Good Death Scale and indwelling urinary catheter use were not significantly associated with falls (p=0.34; p=0.34)., Conclusion: Falls occur in approximately 10% of patients in PCUs, but serious complications are rare. The relationship between falls, independence and quality of dying is complex, that is, a fall may not be necessarily bad, if it is the result of respect for the patient's independence. Healthcare providers need to consider fall prevention while supporting patients' desire to move on their own to maintain independence., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background and Objectives: Home health care supports patient goals for aging in place. Our objective was to determine if home health care use in the last 3 years of life reduces the risk of inpatient death without hospice., Research Design and Methods: We analyzed the characteristics of 2,065,300 Medicare beneficiaries who died in 2019 and conducted multinomial logistic regression analyses to evaluate the association between the use and timing of home health care, dementia diagnosis, and place of death., Results: Receiving any home health care in the last 3 years of life was associated with a lower probability of inpatient death without hospice (Pr 23.3% vs 31.5%, p < .001), and this effect was stronger when home health care began prior to versus during the last year of life (Pr 22.5% vs 24.3%, p < .001). Among all decedents, the probability of death at home with hospice compared to inpatient death with hospice was greater when any home health care was used (Pr 46.0% vs 36.5%, p < .001), and this association was strongest among beneficiaries with dementia who started home health care at least 1 year prior to death (Pr 55.6%, p < .001)., Discussion and Implications: Use of home health care during the last 3 years of life was associated with reduced rates of inpatient death without hospice, and increased rates of home death with hospice. Increasing affordable access to home health care can positively affect end-of-life care outcomes for older Americans and their family caregivers, especially those with dementia., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Aim: To develop a family-centred end-of-life care protocol and evaluate its feasibility., Design: The draft protocol was created by integrating literature review results and existing protocols and interviewing bereaved parents. A Delphi study and an experts' review were conducted to refine the draft, followed by feasibility testing with neonatal intensive care unit nurses., Results: A 71-item protocol based on an integrated end-of-life care model and the family-centred care concept was developed, comprising three sections: principal guidelines, communication during end-of-life care and five substeps (4, 17 and 71 items, respectively) according to changes in an infant's condition. The feasibility was confirmed by an increase in competency and a positive attitude towards infant end-of-life care participants who completed the protocol education., Conclusion: The protocol was feasible and improved nurses' competency and attitude in providing end-of-life care for infants and parents requiring support due to the loss of their infants. It can positively impact the well-being of parents who have experienced the loss of their infants in neonatal intensive care units and enhance family-centred care within the units., Implications for the Profession And/or Patient Care: Application of the family-cantered end-of-life care could support infants' dying process and improve bereaved parents' quality of life in neonatal intensive care units., Impact: This study increased neonatal end-of-life nursing needs' awareness among nurses and parents during bereavement. It offered preliminary evidence regarding the feasibility of a neonatal end-of-life care protocol developed in this study., Reporting Method: AGREE Reporting Checklist 2016., Patient or Public Contribution: We interviewed bereaved parents to develop the draft protocol and involved neonatal care experts for the Delphi study and neonatal nurses (who would use the protocol) as feasibility test subjects., Trial Registration: This was a doctoral dissertation and did not require protocol registration as the feasibility test involved a single neonatal intensive care unit., (© 2024 The Author(s). Journal of Clinical Nursing published by John Wiley & Sons Ltd.)

Objective: Home visiting nurses contribute to end-of-life home care in an aging society. However, few previous studies reported patient outcomes based on nursing practices. This study aimed to examine the correlation between the number of them and the change in home death proportion., Methods: We divided the number of home visiting nurses into four categories: absent, shortage, medium, and abundant. This study adopted the interaction term between the nurse categories and year as the major exposure variable, and home death proportion per municipality as the objective variable. We estimated the average marginal effects (AME) as the change in home death proportion from 2015 to 2020., Results: The total number of home visiting nurses was 36,483 in 2015 and 65,868 in 2020. The coefficients of the interaction term were statistically significant in medium and abundant municipalities (Medium: 1.26 (95% CI: 0.49-2.04), Abundant: 2.15 (95% CI: 0.76-3.55)). Increased home death proportion were estimated as AME: 1.56% (95% CI: 0.99-2.13), 1.35% (95% CI: 0.85-1.84), 2.82% (95% CI: 2.30-3.35), and 3.71% (95% CI: 2.44-4.99) in the absent, shortage, medium, and abundant areas, respectively., Conclusions: To increase the proportion of home deaths, municipalities require a certain number of home visiting nurses., (© 2024 The Author(s). Public Health Nursing published by Wiley Periodicals LLC.)

Background: Ethnically Chinese adults in Canada and the United States face multiple barriers in accessing equitable, culturally respectful care at the end-of-life. Palliative care (PC) is committed to supporting patients and families in achieving goal-concordant, high-quality serious illness care. Yet, current PC delivery may be culturally misaligned. Therefore, understanding ethnically Chinese patients' use of palliative care may uncover modifiable factors to sustained inequities at the end-of-life., Objective: To compare the use and delivery of PC in the last year of life between ethnically Chinese and non-Chinese adults., Design: Population-based cohort study., Participants: All Ontario adults who died between January 1st, 2012, and October 31st, 2022, in Ontario, Canada., Exposures: Chinese ethnicity., Main Measures: Elements of physician-delivered PC, including model of care (generalist; specialist; mixed), timing and location of initiation, and type of palliative care physician at initial consultation., Key Results: The final study cohort included 527,700 non-Chinese (50.8% female, 77.9 ± 13.0 mean age, 13.0% rural residence) and 13,587 ethnically Chinese (50.8% female, 79.2 ± 13.6 mean age, 0.6% rural residence) adults. Chinese ethnicity was associated with higher likelihoods of using specialist (adjusted odds ratio [aOR] 1.53, 95%CI 1.46-1.60) and mixed (aOR 1.32, 95%CI 1.26-1.38) over generalist models of PC, compared to non-Chinese patients. Chinese ethnicity was also associated with a higher likelihood of PC initiation in the last 30 days of life (aOR 1.07, 95%CI 1.03-1.11), in the hospital setting (aOR 1.24, 95%CI 1.18-1.30), and by specialist PC physicians (aOR 1.33, 95%CI 1.28-1.38)., Conclusions: Chinese ethnicity was associated with a higher likelihood of mixed and specialist models of PC delivery in the last year of life compared to adults who were non-Chinese. These observed differences may be due to later initiation of PC in hospital settings, and potential differences in unmeasured needs that suggest opportunities to initiate early, community-based PC to support ethnically Chinese patients with serious illness., (© 2024. The Author(s), under exclusive licence to Society of General Internal Medicine.)

Dyspnea, the subjective sensation of breathlessness, is a distressing and potentially traumatic symptom. Dyspnea associated with mechanical ventilation may contribute to intensive care unit (ICU) associated post-traumatic stress disorder and impaired quality of life. Dyspnea is both difficult to alleviate and a cause of significant distress to patients, their loved ones, and care providers People living with neuromuscular disease, such as amyotrophic lateral sclerosis (ALS) or myasthenia gravis (MG), often rely on a ventilator at late stages of illness due to complications of progressive respiratory muscle weakness and paralysis. When unable to wean from the ventilator, conversations turn towards goals of care and release from the ventilator for comfort and end of life (EOL). Patients with and without neuromuscular disease have high risk for dyspnea at EOL upon ventilator liberation. Although limited recommendations have been published specific to patients with ALS, no guidelines currently exist for the terminal liberation from mechanical ventilation in patients experiencing respiratory muscle insufficiency from a neuromuscular disease. Further research on this topic is needed, including creation of a protocol for ventilator release in patients with neuromuscular disease. The following case reports detail the dissimilar EOL experiences of two patients with different forms of neuromuscular disease., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background:  End-of-life (EoL) decisions are routine in neurosurgical care due to frequent devastating and life-threatening diagnoses. Advance directives, discussions with patients' relatives, and evaluation of the alleged will of the patient play an increasing important role in clinical decision-making. Institutional standards, ethical values, different ethnical backgrounds, and individual physician's experiences influence clinical judgments and decisions. We hypothesize that the implementation of palliative care in neurosurgical wards needs optimization. The aim of this study is to identify possible sources of error and to share our experiences., Methods:  This is a retrospective observational analysis. One hundred and sixty-eight patients who died on a regular neurosurgical ward between 2014 and 2019 were included. Medical reports were analyzed in detail. A differentiation between consistent and nonconsistent palliation was made, with consistent palliative care consisting of discontinuation of medication that was no longer indicated, administration of medication for symptom control, and consequent discontinuation of nutrition and fluid substitution that went beyond satisfying hunger or thirst., Results:  EoL decisions were made in 127 (84.1%) of all 168 cases; 100 patients were included in our analysis. Of these patients, only 24 had an advance directive, and the relatives were included in the communication about the therapy goals in 71 cases. Discontinuation of medication that is not for symptom control was performed in 63 patients, food withdrawal in 66 patients, and fluid substitution that went beyond the quenching of thirst was withdrawn in 27 patients. Thus, consistent palliative care was realized in 25% of all patients. The mean duration from the EoL decision until death was 2.1 days (range: 0-20 days). If a consistent palliative care was carried out, patients survived significantly shorter (nonconsistent palliative care: 2.4 days; range: 0-10 days vs. consistent palliative care: 1.2 days; range: 0-4 days; p  = 0.008)., Conclusions:  The therapy goal should be thoroughly considered and determined at an early stage. If an EoL decision is reached, consistent palliative care should be carried out in order to limit suffering of moribund patients., Competing Interests: None declared., (Thieme. All rights reserved.)

Despite remarkable advances in immunotherapy, melanoma remains a significant cause of cancer mortality. Many factors concerning melanoma mortality are poorly understood, posing an obstacle to optimal care. We conducted a retrospective observational cohort study of 183 patients with metastatic melanoma who died following immunotherapy treatment to investigate sites of metastases at death, settings of death, and mechanisms of death. The median time from metastatic diagnosis to death was 16.1 months (range 0.3-135.1 months). Most patients experienced hospitalization within 3 months before death (80.3%), with 31.7% dying while hospitalized, 31.2% while in inpatient hospice, and 29.4% while in home hospice. The most common sites of metastases at death were distant lymph nodes (62.8%), lung (57.9%), liver (50.8%), brain (38.8%), and bone (37.7%). The most common causes of death were progressive failure to thrive (57.5%), respiratory failure (22.4%), and infection (21.8%); the vast majority (87.9%) of patients died from melanoma-specific causes. Overall, 10.9% of patients in our cohort had survival >5 years after metastatic diagnosis, and 76.2% of long-term survivors died due to melanoma. This study describes factors associated with melanoma mortality, highlighting an ongoing need for therapeutic advancements., (© 2024 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Introduction/aims: Multidisciplinary care for patients with amyotrophic lateral sclerosis (ALS) is recommended in international guidelines, but reaches its limits when immobility increases. This pilot project addresses this gap by delivering home-based, specialized, multiprofessional support to ALS patients who are not able to attend outpatient care. The study assessed the feasibility of this model of care and the satisfaction of both patients and caregivers., Methods: This was a longitudinal cohort study of patients with ALS and their caregivers in the surroundings of Munich, Germany. Patients were regularly visited at home by a multiprofessional team (neurologists/palliative care physicians, nurse, social worker, chaplain)., Results: A total of 94 patients with ALS were included in the homecare project and 88 patients and 74 caregivers were enrolled in the accompanying study. The mean care duration was 221 days, enabling 61% of the 49 deceased patients to die at home. Notably, 20% of patients chose a way to hasten death. Patient satisfaction (ICECAP Supportive Care Measure [SCM]: 23.7/28, CollaboRATE: 10.6/12) and caregiver perception of the end-of-life phase (Caregiver Evaluation of the Quality of End-Of-Life Care [CEQUEL]: 24.9/26) were high., Discussion: This pilot project successfully implemented specialized, home-based multidisciplinary care for ALS patients and caregivers, demonstrating both feasibility and high satisfaction. The program enabled a large proportion of patients to remain in their homes, reducing the need for hospital care. The multiprofessional approach, including neuropalliative, psychosocial and spiritual support provided comprehensive care that addressed needs of patients and caregivers. Further research is warranted to explore cost-effectiveness., (© 2024 The Author(s). Muscle & Nerve published by Wiley Periodicals LLC.)

Background: Goals of care conversations are essential to delivery of goal concordant care. Infrequent and inconsistent goals of care documentation potentially limit delivery of goal concordant care., Methods: At Kaiser Permanente San Francisco Cancer Center, a standardized documentation template was designed and implemented to increase goals of care documentation by oncologists. The centralized, prompt-based template included value clarification of the goals and values of advanced cancer patients beyond treatment preferences. Documented conversations using the template during the initial pilot period were reviewed to characterization the clinical context in which conversations were recorded. Common goals and motivators were also identified., Results: A total of 178 advanced cancer patients had at least 1 documented conversation by a medical oncologist using the goals of care template. Oncologists consistently documented within the template goals of therapy and motivating factors in decision making. The most frequently documented goals of care were "Avoiding Pain and Suffering," "Physical Independence," and "Living as Long as Possible." The least recorded goal was "Comfort Focused Treatment Only.", Conclusions: Review of oncologist documented goals of care conversations using a prompt-based template allowed for characterization of the clinical context, therapy goals and motivators of advanced cancer patients. Communication of goals of care conversations by oncologists using a standardized prompt-based template within a centralized location has the potential to improve delivery of goal concordant care., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Respect of human dignity is an unquestionable part of daily clinical routine as well as of evaluations in medical ethics. Some aspects of human dignity are a subject of transformation in the course of a lifetime. If the ability to form a will is reduced, it might be difficult to satisfy the individual perception of a dignified treatment, which is of particular interest in terminal care. As illustrated by the presented case report, moral problems can arise when the patient's present verbal or non-verbal expressions are opposed to what is documented or what is estimated by dependants to be the individual's will. In clinical decision-making processes, the determination of the will via an advance directive can be overstated, which can go so far that human dignity is reduced to autonomy. A concept of dignity reduced to autonomy misses the point not only of a dignity-centered medical care but also of shared decision-making. In situations at the end of life other aspects, such as authenticity or self-actualization should be considered when respecting the individual's dignity. Medicine should as such not marginalize death but provide a care based on principles that focus on human interaction and respect for a comprehensive concept of dignity., (© 2024. The Author(s).)

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., (© 2024 The Author(s). Acta Anaesthesiologica Scandinavica published by John Wiley & Sons Ltd on behalf of Acta Anaesthesiologica Scandinavica Foundation.)

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., (© 2024 The Author(s). Nursing in Critical Care published by John Wiley & Sons Ltd on behalf of British Association of Critical Care Nurses.)

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., Competing Interests: Disclosures and Acknowledgments The authors would like to acknowledge Katherine Santos for her administrative work on this paper. Dr. Zingmond, Dr. Walling, Dr. Wenger (awards G-30966 and G-31311), Dr. Cassel, and Ms. Kerr (awards G-20493, and G-20495) were supported by the California Health Care Foundation. The contents do not represent the views of the U.S. Department of Veterans Affairs or the United States Government. Funding: Dr. Garcia-Jimenez has nothing to disclose., (Copyright © 2024. Published by Elsevier Inc.)

Background: The adverse health effects of incarceration are well-documented, affecting individuals throughout their life course. However, the influence of a history of incarceration on end-of-life (EOL) experiences remains unexplored. This study aims to examine how prior incarceration affects individuals' experiences and care needs as they approach the EOL., Methods: Leveraging the Health and Retirement Study, we conducted secondary analyses on 1 710 individuals who participated between 2012 and 2018. Through retrospective cohort analysis, we explored the association between incarceration history and EOL care, focusing on pain and symptom burden., Results: Analyses showed that individuals with a history of incarceration experienced significantly higher levels of pain (65% reported "moderate" or "severe" pain) compared to nonincarcerated individuals (50%; adjusted odds ratio = 1.45, 95% confidence interval [CI]: 1.22-1.71, p < .001). Additionally, the symptom burden index revealed that formerly incarcerated individuals had a higher average symptom score (2.8 vs 2.1; β = 0.7, 95% CI: 0.5-0.9, p < .001), indicating a greater range of symptoms in their final year of life. These disparities persisted after adjusting for demographic, health, and socioeconomic variables., Conclusions: This study reveals that a history of incarceration significantly affects EOL experiences, with formerly incarcerated individuals facing higher levels of pain and a greater symptom burden compared to nonincarcerated individuals. This underscores the need for tailored palliative care to address the unique needs of this vulnerable population. This research highlights a critical area for intervention and calls for healthcare systems to adapt their practices to better serve those with incarceration histories., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Context: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL)., Objective: To examine hospital performance on EOL quality measures and to describe healthcare services during the last two years of life for children with CCCs who died in-hospital., Methods: Retrospective automated electronic health record review of children with ≥1 CCC ICD-10 diagnosis code, who died inpatient between October 2020 and March 2023 at a single quaternary U.S. children's hospital. Quality was assessed based on performance on 15 measures across five domains: healthcare utilization, interprofessional supports, medical intensity, symptom management, and communication. Quality EOL care and healthcare services in the last two years of life were determined overall by age group and per patient. Descriptive statistics were used to evaluate demographic differences by age., Results: 266 children with CCCs died in the study timeframe; 45% were infants (n = 120), 52% (n = 137) were male, 42% (n = 113) were white, 64% (n = 170) were non-Hispanic, and 59% (n=156) had public insurance. Children had a median of three CCCs (IQR 2.4; range 1-8). On average, children met 69% (SD 13%) of EOL quality measures for which they were eligible. In the two years prior to death, 98% (n = 261) had an ICU admission, 75% (n = 200) had a procedure requiring sedation, and 29% (n = 79) had received cardiopulmonary resuscitation. 86% (n = 229) died in the ICU., Conclusion: In this study, children with CCCs met 69% of quality measures and received high-intensity healthcare in the last two years of life., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Introduction: To enhance support for individuals at end of life to die at home, a new community-driven home-based hospice program was developed-Home Hospice. This wholistic hospice care program, co-designed by hospice care staff, community end-of-life care providers, researchers, and health systems decision-makers, will provide around the clock care to clients and their families., Methods and Analysis: This mixed methods study, guided by a process evaluation framework, will use secondary client and caregiver data collected as part of regular Home Hospice program processes, as well as primary interview data collected from caregivers at least three months post-death of the client and from hospice staff and volunteers involved in the Home Hospice program. Analysis will include descriptive statistical analysis of quantitative data and thematic analysis employing an inductive and a deductive qualitative analysis approach., Ethics: Ethics approval has been received from the University of Northern British Columbia (File No: 6009117). All individuals and caregivers who enroll in the Home Hospice program will be invited to participate in this study. At three months post-death of the client, hospice staff will contact caregivers to ask if they would like to participate in a one-on-one interview with a research team member. Staff and volunteers will also be eligible to participate in one-on-one interviews with research team members. De-identified participant data will be provided by hospice staff to the research team. All participants will provide informed consent prior to participation in the study., Dissemination: This study will use an integrated Knowledge Translation/Knowledge Mobilization (iKTKM) lens wherein the research team will work closely and meaningfully with knowledge users and community partners at all stages. Evidence-based and targeted iKTKM products will be created, including community event presentations and social media posts to share findings with participant and community audiences. Further, findings will be disseminated at conferences, workshops, and policy rounds with academic and decision-making audiences. Preliminary and full project findings will be published in high-quality open access journals., Strengths and Limitations of This Study: Co-design of Home Hospice program and evaluation metrics involves researchers, hospice staff, health systems decision-makers, and community members.Evaluation metrics involve prospective collection of service utilization from client, family, hospice, and health systems perspectives.Integrated knowledge translation approach which frames the knowledge dissemination plan for the study findings focuses on a range of audiences, including local citizens, hospice and community end-of-life care providers, health systems decision-makers, and academic professionals.As a one-year pilot study, the number of clients who may be able to participate in this program will be approximately 50 persons., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Freeman et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: The existing literature on nursing care for patients who choose home as their preferred place of death is scattered and lacks a coherent overview. This scoping review aimed to explore and categorize the available evidence on how nurses provide care for patients preferring to die at home., Methods: Studies that included nurses and were focused on nursing care for patients who choose the home as their preferred place of death were included in the review. The scoping review considered studies with quantitative, qualitative, or mixed method designs; systematic reviews; and meta-analyses. No time restrictions were added. Key information sources were Medline, CINAHL (EBSCO), Scopus (Elsevier) and Google Scholar. Systematic reviews were searched for in the Cochrane Database of Systematic Reviews. Unpublished studies and grey literature were searched for in ProQuest Dissertations and Theses. The reference list of the studies included was searched., Results: A total of 13 studies were deemed eligible for inclusion in the review, of which (n = 11) were qualitative and (n = 2) were both qualitative and quantitative. The studies were published between 2008 and 2023 and were conducted in the United Kingdom (n = 5), Norway (n = 4), Australia, Sweden, Canada and Japan. The studies included in this review highlighted issues of competence, resource limitations, flexibility as a coping mechanism, as well as collaboration and family caregivers., Conclusions: This review identified significant challenges in delivering nursing care for patients who prefer to die at home, including staff shortages, resource limitations, and educational deficiencies. Despite these barriers, nurses showed a strong commitment to patient care, highlighting the need for increased support and collaboration with family caregivers to improve home-based end-of-life care., Implications for Research: To improve care for patients who wish to die at home, it is crucial to address staff shortages and enhance nurse training to close knowledge gaps and ensure consistent, high-quality care. Healthcare systems must also allocate adequate resources to ensure that nurses have the necessary tools to deliver safe and effective care in home settings. Strengthening interdisciplinary collaboration will further enhance patient outcomes by supporting both nurses and family caregivers in end-of-life care., (© 2024. The Author(s).)

Objectives: Patient dignity is a key concern during end-of-life care. Dignity Therapy is a person-centered intervention that has been found to support patient dignity interviews focused on narrating patients' life stories and legacies. However, mechanisms that may affect utility of the Dignity Therapy have been little studied. In this study, we evaluate whether the extent to which patients are more communal in their interviews acts as a mechanism for increased patient dignity., Methods: We analyzed the written transcripts from Dignity Therapy interviews with 203 patients with cancer over the age of 55 receiving outpatient palliative care ( M = 65.80 years; SD = 7.45 years, Range = 55-88 years; 66% women). Interviews followed core questions asking patients about their life story and legacy. We used content-coding to evaluate the level of communion narrated in each interview, and mediation analyses to determine whether communion affected dignity impact., Results: Mediation analyses indicated that the extent to which patients narrated communion in their interview had a significant direct effect on post-test Dignity Impact. Communion partially mediated the effect of pre-test on post-test Dignity Impact. For both the life story and legacy segments of the session, narrating communion had a direct effect on post-test Dignity Impact., Significance of Results: Narrating communion serves as a mechanism for enhancing patient dignity during Dignity Therapy. Providers may consider explicitly guiding patients to engage in, elaborate on, communal narration to enhance therapeutic utility. In addition, encouraging patients with advanced illness to positively reflect on relationships in life may improve patient dignity outcomes in palliative and end-of-life care.

Objectives: The purpose of this study is to describe and evaluate, in a real-life context, the support and communicate with families (SCF) team's contribution to maintaining communication and supporting relatives when patients are at the end of their lives by mobilising the points of view of SCF team members, healthcare professionals, managers and the relatives themselves., Design: An in-depth mixed-method case study (quantitative and qualitative). Individual interviews were conducted with members of the SCF team to assess the activities and areas for improvement and with co-managers of active COVID-19 units. Healthcare professionals and managers completed a questionnaire to assess the contribution made by the SCF team. Hospitalised patients' relatives completed a questionnaire on their experience with the SCF team., Setting: The study was conducted in a university teaching hospital in the province of Québec, Canada., Participants: Members of the SCF team, healthcare professionals, managers and relatives of hospitalised patients., Results: Between April and July 2020, 131 telephone communications with families and healthcare professionals, 43 support sessions for relatives of end-of-life patients and 35 therapeutic humanitarian visits were carried out by members of the SCF team. Team members felt that they had played an active role in humanising care. Fully 83.1% of the healthcare professionals and managers reported that the SCF team's work had met the relatives' needs, while 15.1% believed that the SCF team should be maintained after the pandemic. Fully 95% of the relatives appreciated receiving the telephone calls and visits, while 82% felt that the visits had positive effects on hospitalised patients., Conclusion: The COVID-19 pandemic forced the introduction of a social innovation involving support for and communication with families. The intention of this innovation was to support the complexity of highly emotional situations experienced by families during the COVID-19 pandemic., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Physiotherapy has demonstrated significant benefits in enhancing quality of life and managing symptoms of people in need of palliative care (PC). Despite these benefits, palliative physiotherapy is infrequently integrated into community-based care, where most PC services are delivered. The limited prevalence of these treatments highlights the need to explore the factors influencing their delivery in home settings., Objectives: This study‎ aimed to elucidate the factors that influence the scope of occasional in-home palliative physiotherapists' interventions as perceived by the physiotherapists who provide these treatments., Methods: A qualitative study was conducted, involving 15 physiotherapists (nine women and six men), all employed by a Health Maintenance Organization (HMO), who typically work in community-based clinics but occasionally provide palliative physiotherapy treatments outside of their regular working hours. Data were collected via in-depth, semi-structured interviews, using an interview guide and analyzed using reflective thematic analysis., Result: Two main themes emerged: (1) External factors influencing the scope of palliative physiotherapy treatments. These include patients' characteristics and their disposition toward palliative physiotherapy treatments, family dynamics amongst each other and with the physiotherapists, and interactions of the physiotherapists with the palliative multidisciplinary team; (2) Physiotherapists‎'‎ inclination to provide PC treatments. This theme encompasses the physiotherapists' knowledge, role perception, emotional experiences, and coping strategies during the provision of PC., Conclusion: External and personal factors shape the scope of in-home PC treatments. Improving communication and addressing emotional challenges and coping strategies could enhance care delivery.

Background: Infectious diseases (ID) physicians are increasingly faced with the challenge of caring for patients with terminal illnesses or incurable infections., Methods: This was a retrospective cohort of all patients with an ID consult within an academic health system from 1 January 2014 through 31 December 2023, including community, general, and transplant ID consult services., Results: There were 60 820 inpatient ID consults (17 235 community, 29 999 general, and 13 586 transplant) involving 37 848 unique patients. The number of consults increased by 94% and the rate rose from 5.0 to 9.9 consults per 100 inpatients (P < .001). In total, 7.5% of patients receiving an ID consult died during admission and 1006 (2.6%) of patients were discharged to hospice. In-hospital mortality was 5.2% for community ID, 7.8% for general ID, and 10.7% for transplant ID patients (P < .001). Six-month mortality was 9% for all nonobstetric admissions versus 19% for community ID, 20.9% for general ID, and 22.3% for transplant ID. In total 2866 (7.6%) of all patients receiving ID consultation also received palliative care consultation during the same hospitalization. The index ID consult preceded any palliative consult in the majority (69.5%) of cases. A total of 16.3% of patients had a do-not-resuscitate order during the index hospitalization; 12.2% of all patients with a do-not-resuscitate order had this placed on the same day as the ID consult., Conclusions: Patients receiving ID consultation were increasingly complex and more likely to die soon after consultation. These results provide a framework for ID clinicians to consider their role in end-of-life care., Competing Interests: Potential conflicts of interest. The authors: No reported conflicts of interest. All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest., (© The Author(s) 2024. Published by Oxford University Press on behalf of Infectious Diseases Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Rationale, Aims, and Objectives: The Perceptions of Palliative Care Instrument (PPCI) is a tool used to access perceptions towards palliative care in patients with advanced cancer. However, its psychometric properties have not been widely tested using modern psychometric methods. This study aimed to examine the psychometric properties of the PPCI in patients with advanced cancer using Rasch analysis., Methods: Four hundred and forty four Participants were recruited from the Department of Medical Oncology at a tertiary care hospital in Xinxiang City, Henan Province, China, between October 2020 and February 2021. Participants completed the PPCI. Rasch analysis procedures were conducted, including assessment of unidimensionality, model-date fit, rating scale function, differential item functioning, item-person map, and person and item reliability., Results: The unidimensionality of the PPCI was confirmed, although two items (18 and 21) did not fit the Rasch model. The degree of fit of each item to its respective dimension was excellent, with Infit MNSQ and Outfit MNSQ values ranging from 0.73 to 1.33. The PPCI demonstrated high reliability, with an item reliability of 0.99 and a person reliability of 0.77., Conclusion: The PPCI is a valid and reliable instrument for assessing perceptions of palliative care in advanced cancer patients. However, to further improve the quality and applicability of the PPCI, the deletion of items 18 and 21 is recommended, as they did not fit the Rasch model., (© 2024 John Wiley & Sons Ltd.)

Objectives: In 2022, assisted suicide (AS) was legalized in Austria. We aimed to investigate the experiences and attitudes of palliative care (PC) and hospice nurses toward AS in Austria after the first year of implementation of the new law., Methods: A cross-sectional survey was distributed online to nurses in every known specialized and general hospice and PC units in Austria ( n = 255 units). The questionnaire included sociodemographic characteristics, the Assisted Suicide Attitude Scale, the Comfort Discussing Assisted Suicide Scale, and questions on recent experiences with AS requests. We used Spearman's correlation coefficient for determining associations between sociodemographic characteristics and attitudes toward AS, as well as comfort discussing AS. For comparison of frequencies, we applied ꭓ 2 tests. We computed a linear regression model to examine predictors for attitudes toward AS., Results: The total sample were N = 280 nurses. More than half (61.2%) indicated that they had cared for a patient who expressed a wish for AS within the first year of implementation. Though responses varied widely, more nurses expressed support for AS than those were opposed (50.36% and 31.75%, respectively). Factors that statistically contributed to more reluctance toward AS in the regression model were older age, religiousness, and experience of working with patients expressing a wish for AS., Significance of Results: This work provides valuable insight into nurses' perceptions toward the legislation of AS in the first year since the new law was passed. The results can inform the future development of the AS system and support for nurses in end-of-life care, and critically contribute to international discussions on this controversial topic.

Background: Evidence based guidelines for treatment of physical symptoms during the last days of life in older people are not available., Aim: We wanted to synthesize the existing evidence on the pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting during the last days of life in older people to develop recommendations that can help guide clinical practice., Design: A systematic review was conducted (PROSPERO #CRD42023406100) and reported in accordance with PRISMA guidelines., Data Sources: MEDLINE and EMBASE were searched from inception till March 2023, together with national and international guideline databases., Results: Four predominantly descriptive studies on opioid use were included for the treatment of pain and four for dyspnea, without clear evidence for the choice of one specific opioid, nor a specific opioid dose. For death rattle, five randomized controlled trials and two retrospective studies were included. These provide evidence for the prophylactic treatment of death rattle with hyoscine butylbromide. For fever, nausea, and vomiting, no articles met the inclusion criteria., Conclusion: Limited evidence exists to guide the pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting in the last days of life of older people. Other than the use of opioids for treatment of pain and dyspnea and prophylactic administration of hyoscine butylbromide to decrease the likelihood of developing death rattle, no specific recommendations can be formulated for use in clinical practice. This demonstrates the challenging nature of research in the last days of life of older people, despite its pressing need., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: People with end-of-life chronic obstructive pulmonary disease (COPD) experience debilitating physical limitations, with a high mortality rate. Our research has shown health system design and delivery leads to inequitable outcomes. Enabling people with end-of-life COPD, their support people, and health professionals to partner in setting the agenda for resource allocation may inform health service improvement., Design: Qualitative methodology utilising focus groups including patients, family, friends, informal support people, health care workers and professionals., Methods: The analysis, utilising critical theory and Actor-Network theory, positioned people with severe COPD, their support people and health professionals as experts in end-of-life care. Analyses triangulated these perspectives, and were reviewed by the research investigators and an expert reference group., Results: Participants (n=74) in seven focus groups reported their experiences of inequity within the healthcare system. Equity was an overarching phenomenon identified by participants, with three specific themes being described: policy design, system design, and service design., Conclusion: Experiences of patients, their support people and health professionals as experts in end-of-life COPD care can inform health systems and health service design to address current inequities in funding and delivery of care for end-of-life COPD., (© 2024. The Author(s).)

Context: Modern medicine aims to ensure a world in which all people experience a good end of life as an integral part of their life journey. A good end-of-life experience means dying with dignity and receiving the best healthcare based on scientific evidence., Objective: This study aims to reach a consensus about the contents of a comprehensive instrument based on the 10/40 Model of the International Collaborative for the Best Care for the Dying Person for evaluating inpatients facing imminent death in Portuguese internal medicine wards and a proposal for anticipatory medication for symptom control in inpatient and home care settings., Methods: We employed the Delphi method and conducted various rounds of questionnaire administration to 23 Portuguese internists competent in palliative medicine. Data were obtained in July and September of 2022., Results: Consensus was reached among the expert panel on the diagnostic, initial assessment, monitoring, and after-death care items of the tool, with minor adjustments to wording or content. However, it was not possible to reach a consensus on most of the proposals presented for anticipatory medication for symptomatic control., Conclusion: We present the consensus about the contents of a comprehensive instrument for evaluating inpatients facing imminent death in Portuguese internal medicine wards. Best practices in this setting were defined from the point of view of internists with expertise in palliative care. However, the best pharmacological practices still require further reviews of the literature and consensus.

Purpose: This scoping review aims to deepen the understanding of end-of-life anticancer drug use in lung cancer patients, a disease marked by high mortality and symptom burden. Insight into unique end-of-life treatment patterns is crucial for improving the appropriateness of cancer care for these patients., Methods: Comprehensive searches were carried out in Medline and Embase to find articles on the utilization of anticancer drugs in the end of life of lung cancer patients., Results: We identified 68 publications, highlighting the methodological characteristics of studies including the timing of the research, disease condition, treatment regimen, type of treatment, and features of the treatment. We outlined the frequency of anticancer drug use throughout different end-of-life periods., Conclusion: This review provides a comprehensive overview of primary studies exploring end-of-life treatments in lung cancer patients. Methodological inconsistencies pose many challenges, revealing a notable proportion of patients experiencing potential overtreatment, warranting more standardized research methods for robust evaluations., (© 2024. The Author(s).)

Advance care planning (ACP) has traditionally aimed at ensuring that patients' end-of-life (EOL) wishes are understood and respected. However, recent literature raises concerns about its effectiveness, with many trials indicating that ACP does not significantly improve goal-concordant care, enhance quality of life or reduce healthcare costs. This is because patients' future decisions are influenced by their transient preferences due to projection bias. To remain relevant, ACP requires a radical shift in perspective, implementation and branding. First, ACP's mission must be redefined with a focus on: Educate, Share and Prepare. This perspective emphasises ongoing conversations about patient health and illness, sharing of patients' current values and goals of care and preparation for the future, rather than making definitive future decisions. Second, ACP should be integrated into routine care, normalising these discussions. Simplifying ACP processes and shifting incentives to support shared responsibility among stakeholders can enhance integration. Last, rebranding ACP as 'Advance Care Preparation' can clarify its purpose, distinguishing it from EOL planning and increasing its uptake. This rebranding ensures that ACP meets the evolving needs of patients and their families, ultimately enhancing the quality of care and patient satisfaction. These changes in perspective, implementation and branding can transform ACP into a valuable tool for delivering compassionate, patient-centred healthcare, making it relevant to all individuals., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Background Despite many benefits of end-of-life (EOL) planning, only 1 in 3 adults has EOL documentation, with low rates in resident primary care clinics as well. Objective To increase clinic completion of life-sustaining treatment (LST) notes and advance directives (AD) for veterans at highest risk for death. Methods The setting was a Veterans Affairs (VA) internal medicine primary care clinic. All clinic residents in the 2021-2022 academic year and all clinic patients identified through a VA risk-stratification tool as highest risk for death were included. Baseline AD and LST completion rates were determined through manual chart review. Our interventions included 2 hours of teaching to increase resident knowledge of EOL planning and a systematic process improvement to complete EOL planning appointments. Outcomes assessed included anonymous resident pre- and post-surveys of self-assessed knowledge and comfort with EOL conversations, as well as rates of LST and AD completion determined through serial chart review. Results In the 2021-2022 academic year, 22 residents (100%) and 54 patients were included. Post-intervention surveys (n=22, 100%) showed improved self-assessed knowledge of EOL concepts and comfort with patient discussions (median Likert increase 3 to 4). The number of residents who completed an EOL planning visit increased from 9 of 22 (41%) to 15 (68%). LST completion increased from 9 of 54 (17%) to 29 (54%), and AD completion increased from 18 of 54 (33%) to 33 (61%). Conclusions A brief teaching intervention to prepare residents for comprehensive EOL visits combined with process improvement to offer EOL planning visits improved self-reported knowledge and comfort and completion of EOL visits.

Background: In nearly all jurisdictions where it is permitted, Medical Assistance in Dying is situated in a healthcare system. Currently, limited evidence demonstrates how supply and demand factors influence access to Medical Assistance in Dying., Objective: The aim of this study is to synthesise empirical research from jurisdictions where Medical Assistance in Dying is legal to identify how supply and demand factors influence access for eligible adults., Method: An integrative review was conducted. CINAHL Complete, PubMed, ProQuest, PsycINFO and Embase databases were systematically searched for studies published between January 1998 and January 2024. Records were independently assessed against inclusion and exclusion criteria. Additional studies were identified by forward and backward citation searching. All studies were assessed for quality. Findings were analysed deductively using an established conceptual framework, and a secondary narrative synthesis was undertaken., Results: Fifty-eight studies met the inclusion criteria. Most studies (n = 32) reported results related to the supply side, 16 reported on the demand side and 10 reported on both supply and demand dimensions of access. Studies about supply showed that health service policies may obstruct access to Medical Assistance in Dying. For healthcare professionals, the practice entails an additional workload and can create tensions with colleagues. Studies of the demand for Medical Assistance in Dying focused on supporting time-critical decisions, adequate planning and caregiver support., Conclusion: Access to Medical Assistance in Dying requires the participation of health services and healthcare professionals but is hindered by policies that obstruct access and direct financial and indirect emotional labour costs. Innovative and inclusive models to promote high-quality, compassionate care at the end of life and access to Medical Assistance in Dying should be considered., Patient or Public Contribution: Patients, caregivers and service users were involved in many of the studies included in this review, and their experiences and perspectives contributed to the analysis and synthesis in this review., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Introduction: There is growing recognition that healthcare inequalities faced by people with intellectual disabilities extend to their experiences at the end of life, resulting in calls for more inclusive research to help address these inequities. Our study aimed to address this through the co-design of a toolkit for supporting end-of-life care planning with people with intellectual disabilities. To inform the co-design process, we undertook an evidence review to identify existing tools, resources and approaches that were already being used in practice., Methods: Our evidence review comprised three components: (i) a rapid scoping review of the academic literature, (ii) a desk-based search of the grey literature and (iii) an online survey to capture unpublished resources that were distributed to services, professionals, third-sector organisations and family members. A longlist of existing materials was appraised using an adapted version of the AGREE II instrument, resulting in a shortlist that was shared with the co-design team., Results: The evidence review played a critical role in the co-design of a new toolkit of end-of-life care resources for people with intellectual disabilities. However, AGREE II proved to be limited for our purposes., Conclusions: The survey was particularly useful in helping us identify resources, tools and approaches in current use. We identified evidence review processes that served to support co-design team activities and elements that were more problematic. We argue that evidence review practices might be enhanced to better aid co-design activities in health and care research, particularly for studies involving people with intellectual disabilities., Patient or Public Contribution: This article reflects on an evidence review that was conducted as part of The Victoria and Stuart Project. People with intellectual disabilities were deeply involved at every stage of project design, delivery and dissemination. The project employed people with intellectual disabilities as members of the core research team. People with intellectual disabilities and family carers were members of the project co-design team and the project Advisory Group. The evidence review process itself was led by academic members of the research team with contributions from colleagues with intellectual disabilities via the Advisory Group and core research team. The findings from the evidence review were used by the co-design team to inform the development of an end-of-life care planning toolkit for people with intellectual disabilities., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Aim: To implement shared decision-making (SDM) through a patient decision aid (PtDA) for the initiation of palliative care (PC) in end-of-life (EOL) cancer patients., Methodology: A comprehensive Scoping Review was conducted on SDM in PubMed, CINAHL and PsycInfo. An evidence-based implementation of PtDAs was created using the Joanna Briggs Institute framework, which followed rigorous pillars: (1) context, (2) facilitation and (3) evaluation., Results: Fifteen studies were identified and categorised into (1) Implementation characteristics and (2) Strategies for implementing SDM in terminally ill cancer patients. SDM should consider the decision-making location, optimal timing, participants and decision type. Strategies include professional training, PtDAs and implementation programmes. A PtDA implementation protocol in video format for deciding to initiate PC is proposed, following International Patient Decision Aid Standards (IPDAS) and Clinical Practice Guidelines (CPG)., Conclusions: SDM implementation should be guided by evidence-based methodological models justifying and structuring its execution, especially in complex and interdisciplinary contexts. National or international frameworks facilitate the adoption of health innovations, such as PtDAs, benefiting patients and improving their usage., Practice Implications: SDM is not just a concept but an important approach to the Care of cancer patients at EOL, enhancing patient satisfaction and improving care quality. The success and sustainability of SDM hinge on the fundamental aspects of staff training, interdisciplinary collaboration and ongoing evaluation. The lack of specific aid in Spanish underscores the immediate need for local development. Further research is needed in this area, as most reviewed studies did not measure SDM effectiveness in diverse hospital settings., Patient or Public Contribution: This proposal was developed based on the experience and input of the nursing staff from the healthcare service where it is intended to be implemented., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Background: After enactment of the Patient Right to Autonomy Act in Taiwan, most of the individuals participating in advance care planning (ACP) and signing advance decisions (AD) have been healthy adults. This demographic is inadequately covered in the literature, in which related studies focus primarily on individuals with major illnesses., Purpose: This study was implemented to understand the experiences of healthy adults participating in ACP., Methods: A qualitative approach was taken and participants were recruited from ACP outpatient clinics in three hospitals in northern, central, and southern Taiwan. All of the participants were healthy adults who had completed the ACP process, did not have a major illness, had no psychiatric diagnoses, and could express themselves clearly. Data were collected via semi-structured interviews and analyzed using content analysis., Results: A total of 15 participants were interviewed, generating three major themes: "Establishing the foundations of ACP", "Preserving dignity in end-of-life care", and "Key elements for successful ACP". Their motivation to engage in ACP and sign the AD form was influenced by past experiences and a desire to maintain dignity and physical autonomy through the aging process. Their decision-making processes were influenced by family opinions, sociocultural factors, and systemic dynamics., Conclusions / Implications for Practice: During the ACP and AD signing process, the consulting team not only helps healthy adults successfully provide informed consent but also, by fostering a supportive communication environment, ensures medical preferences and expectations are accurately reflected, thus promoting mutual care, support, and understanding among all parties.

Objective: Research findings regarding child-centered care and electronic patient reported outcome measures (e-PROMs) within pediatric palliative oncology care reveal an intricate field of study. This study aimed to map innovations in e-PROMs for the pediatric cancer population in palliative care and their impact on symptom management, and communication with healthcare professionals. Methods: A scoping review was designed following the Arksey and O'Malley framework. Literature searches were conducted in CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS, and Web of Science. Inclusion criteria targeted children aged 0-18 years with cancer, receiving palliative and/or end-of-life care, and using e-PROMs. Results: Twelve articles were included: 10 quantitative studies, one qualitative study, and one mixed-method study. A narrative synthesis approach was used to summarize the findings, categorized into three sections: (a) technological innovation of e-PROMs in pediatric palliative oncology care; (b) the impact of e-PROMs on symptom monitoring, management, and children's care; (c) the effects of e-PROMs on communication between children and healthcare professionals in pediatric palliative oncology care. Conclusion: e-PROMs have proven effective in empowering children to express their perspectives and actively engage in their end-of-life care. Due to flexible software and devices designed for various age groups, these tools fit seamlessly into children's daily routines and preferences, including the use of play-oriented applications. They facilitate a deeper understanding, and management of physical and emotional symptoms while ensuring care remains child-centered. This emphasizes the importance of preserving the essence of childhood and addressing the unique needs and experiences of young patients in pediatric palliative oncology care., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Patients from groups that are racially/ethnically minoritized or of low socioeconomic status receive more intensive care near the end of life, endorse preferences for more life-sustaining treatments, experience lower quality communication from clinicians, and report worse quality of dying than other patients. There are many contributory factors, including system (eg, lack of intensive outpatient symptom management resources), clinician (eg, low-quality serious illness communication), and patient (eg, cultural norms) factors. System and clinician factors contribute to disparities and ought to be remedied, while patient factors simply reflect differences in care and may not be appropriate targets for intervention., Competing Interests: Disclosure The authors do not have any commercial or financial conflicts of interest., (Published by Elsevier Inc.)

Introduction: Timely identification of dying in motor neurone disease enables optimal care, yet we know that healthcare professionals can fail to recognise when death is approaching. Clinical factors help predict the end of life in other terminal conditions. Examining these principles in motor neurone disease would help guide more accurate recognition of this critical phase., Aim: To examine and map out what is known about dying in patients with motor neurone disease, and the recognition of dying by healthcare professionals., Design: A scoping review was conducted following the Arksey and O'Malley methodological framework., Data Sources: Four electronic databases (MEDLINE, Scopus, PsycINFO and CINAHL) and grey literature were searched on the 10th May 2023. Reference lists and citations were also reviewed., Results: From 1512 articles, 13 studies were included. Dyspnoea, anxiety and pain were the most common symptoms associated with the dying phase. Worsening respiratory function, the development of specific new symptoms and deteriorating symptom control suggested approaching death. No studies reported changes in vital signs or biomarkers associated with dying. Barriers to the recognition of dying by healthcare professionals included a rapid and unpredictable terminal decline., Conclusions: Dying in motor neurone disease is associated with patterns of symptoms and signs, however evidence is limited compared with other terminal conditions and requires further exploration. The characteristic sudden and unpredictable terminal decline is a key barrier to recognition of dying by healthcare professionals. Optimising advance care planning is one approach to navigate these complex, unpredictable clinical situations., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Idiopathic Pulmonary Fibrosis (IPF) is a lethal disease; most patients die in hospitals because palliative care (PC) is not wildly and early available. We aimed to determine the impact of an early PC program in IPF patients on place of death, emergency department (ED) admission, unplanned medical visits and survival before and after its implementation at our clinic., Methods: IPF patients from our ILD clinic who died between January 1st, 2018 and December 31th, 2023 were included in the analysis. Primary outcomes were location of death, number of ED access and unplanned medical visits; secondary outcomes was survival from diagnosis., Results: A total of 46 decedents between 2018 and 2023 were analysed: (median age 71,5 ± 5,5 years, 89 % male): 26 died before the implementation of the early PC program and 20 after. Through χ 2 test, location of death resulted significantly different in the two groups, showing the capacity of early PC to favor at home or in hospice death (p = 0,02); similarly, the number of unplanned visits was significantly lower (p = 0,03). Finally, survival was significantly lower in patients not receiving the early PC program (p = 0,01)., Conclusion: The availability of an early PC program since the diagnosis significantly reduced both the death rate in hospital settings, favoring dying in hospice or at home, and the number of unplanned medical visits. Furthermore, IPF patients receiving early PC showed a longer survival than those who did not., (Copyright © 2024 The Author(s). Published by Elsevier B.V. All rights reserved.)

Context: Little is known about Veterans who die during a short terminal admission, which renders them ineligible for the Department of Veterans Affairs (VA) Bereaved Family Survey., Objectives: We sought to describe this population and identify opportunities to improve end-of-life (EOL) care quality., Methods: Retrospective, cohort analysis of Veteran decedents who died in a VA inpatient setting between October 2018-September 2019. Veterans were dichotomized by short (<24 hours) and long (≥24 hours) terminal admissions; sociodemographics, clinical characteristics, VA and non-VA healthcare use, and EOL care quality indicators were compared., Results: Among 17,033 inpatient decedents, 723 (4%) had short terminal admissions. Patients with short compared to long terminal admissions were less likely to have a VA hospitalization (38% vs. 54%) in the last 90 days of life and were more likely to die in an intensive care (49% vs 21%) or acute care (27% vs 18%) unit. Patients with a short compared to long admission were about half as likely to receive hospice (33% vs 64%) or palliative care (33% vs 69%). Most patients with short admissions (76%) had a life-limiting condition (e.g., cancer, chronic obstructive pulmonary disease) and those with cancer were more likely to receive palliative care compared to those with non-cancer conditions., Conclusion: Veterans with short terminal admissions are less likely to receive hospice or palliative care compared to patients with long terminal admissions. Many patients with short terminal admissions, such as those with life-limiting conditions (especially cancer), receive aspects of high-quality EOL care, however, opportunities for improvement exist., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. All rights reserved.)

Background: Patients are frequently admitted to hospital in the last year of life. Actively recognising patients at this stage gives the opportunity to plan future care., Methods: We performed a cross-sectional survey of all acute medical and surgical inpatients at one tertiary hospital. Two simple screening tools, the indicators for a palliative approach and the surprise question identified a group of patients at greatly increased risk of dying over the next year., Results: The one-year mortality of the study group was 27%, however was 52% and 65% for those identified at risk by the indicators for a palliative approach and surprise question tools. The surprise question had an area under the receiver operator curve value of .84., Conclusion: These screening tools could be used to help clinicians identify hospital inpatients that would benefit from advance care planning and a tailored approach to their care., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Introduction: At the end of life, the prevalence of delirium and pain is high. Current therapy is not satisfactory. Dexmedetomidine could be useful in the control of delirium and pain but is not approved outside of intensive care setting. Our objectives are to evaluate existing evidence in the literature that assessed the efficacy of dexmedetomidine in pain and delirium control and its safety in palliative care patients outside intensive care units. This systematic review was prospectively registered with PROSPERO and included a risk of bias assessment. Methods: PubMed and SCOPUS were examined for literature published until 2023. Experimental, cohort, cross-sectional, case-control studies, and case series/reports were included if they evaluate the use of dexmedetomidine in delirium and/or pain management in hospitalized palliative care adult patients. Studies were excluded if they were carried out in intensive care units. Results: Of the initial 529 records, 14 were included. Although only two studies were randomized trials, most were small and only one had low risk of bias. In most case reports and in the two retrospective cohort studies, dexmedetomidine appears to be a better option for these symptoms, although differences were not significant in the randomized trials. Discussion: Dexmedetomidine seems to be a promising option for refractory pain and delirium and may contribute to a reduction in opioid administration to control pain. This is the first systematic review of dexmedetomidine in palliative care. Quality evidence is limited, but clinical properties of dexmedetomidine justify the conduction of controlled trials in palliative care.

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., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objective: To evaluate the association between provider religion and religiosity and consensus about end-of-life care and explore if geographical and institutional factors contribute to variability in practice., Methods: Using a modified Delphi method 22 end-of-life issues consisting of 35 definitions and 46 statements were evaluated in 32 countries in North America, South America, Eastern Europe, Western Europe, Asia, Australia and South Africa. A multidisciplinary, expert group from specialties treating patients at the end-of-life within each participating institution assessed the association between 7 key statements and geography, religion, religiosity and institutional factors likely influencing the development of consensus., Results: Of 3049 participants, 1366 (45%) responded. Mean age of respondents was 45 ± 9 years and 55% were females. Following 2 Delphi rounds, consensus was obtained for 77 (95%) of 81 definitions and statements. There was a significant difference in responses across geographical regions. South African and North American respondents were more likely to encourage patients to write advance directives. Fewer Eastern European and Asian respondents agreed with withdrawing life-sustaining treatments without consent of patients or surrogates. While respondent's religion, years in practice or institution did not affect their agreement, religiosity, physician specialty and responsibility for end-of-life decisions did., Conclusions: Variability in agreement with key consensus statements about end-of-life care is related primarily to differences among providers, with provider-level variations related to differences in religiosity and specialty. Geography also plays a role in influencing some end-of-life practices. This information may help understanding ethical dilemmas and developing culturally sensitive end-of-life care strategies., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Context: Early specialist palliative care (PC) involvement in metastatic non-small cell lung cancer (mNSCLC) is associated with improved quality of life, less aggressive end of life (EoL) care, and longer survival. As treatment paradigms for NSCLC have evolved, PC utilization remains low., Objectives: This work examines how the timing and extent of PC involvement impacts outcomes and the patient experience in mNSCLC in the era of immunotherapy., Methods: This retrospective review analyzed patients with mNSCLC who initiated first-line treatment with chemotherapy, immunotherapy, or combined chemoimmunotherapy at Duke University between March 2015 and July 2019. PC consultation and outcomes data were abstracted through November 2022. EoL care variables were analyzed using descriptive statistics., Results: 152 patients were stratified based on whether PC was consulted during their disease course. 80 patients (53%) never saw PC, while the 72 patients (47%) who saw PC were further stratified by time to first PC encounter and total number of PC visits. 31% were seen within two months of diagnosis (early), 33% between two and six months (intermediate), and 36% after 6 months (late). Patients who received early PC had longer median time on hospice (35 days), had lower rates of aggressive EoL care (43%), and experienced less frequent in-hospital death (14%) compared to other groups., Conclusion: This real-world study reveals that referrals to PC still occur late or not at all in mNSCLC despite demonstrated benefits of early PC integration. Early outpatient PC referrals resulted in longer time on hospice, lower frequency of aggressive EoL care, and lower rates of in-hospital death., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Pain and symptom management at the end of life (EoL) can pose unique challenges, particularly when symptoms are refractory to conventional methods. Dexmedetomidine, originally approved for sedation in ventilated patients, has been demonstrated to be beneficial in pain management and palliative care settings by functioning as an alpha-2 agonist. Methods: A retrospective review of inpatient palliative care unit (IPU) records from January 2020 to December 2023 was conducted. Twenty-five adult patients receiving continuous dexmedetomidine for refractory pain at the EoL were identified. These patients were further evaluated for concurrent opioid, benzodiazepine, and chlorpromazine usage. Results: Patients experienced predominantly cancer-related pain, and had a median infusion duration of 5 days. Dexmedetomidine's initial dosing differed between the intensive care unit (ICU) and IPU settings. There was a trend toward a decreased opioid requirement 24 hours after initiation. Patients transferred from the ICU showed a progressive increase in opioid use. Conclusion: This study contributes to understanding dexmedetomidine's role in managing refractory symptoms at the EoL in the palliative care setting.