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PURPOSE: The Palliative Care Outcomes Collaboration (PCOC) aims to enhance patient outcomes systematically. However, identifying crucial items and accurately determining PCOC phases remain challenging. This study aims to identify essential PCOC data items and construct a prediction model to accurately classify PCOC phases in terminal patients. METHODS: A retrospective cohort study assessed PCOC data items across four PCOC phases: stable, unstable, deteriorating, and terminal. From July 2020 to March 2023, terminal patients were enrolled. A multinomial mixed-effect regression model was used for the analysis of multivariate PCOC repeated measurement data. RESULTS: The dataset comprised 1933 terminally ill patients from 4 different hospice service settings. A total of 13,219 phases of care were analyzed. There were significant differences in the symptom assessment scale, palliative care problem severity score, Australia-modified Karnofsky performance status, and resource utilization groups-activities of daily living among the four PCOC phases of care. Clinical needs, including pain and other symptoms, declined from unstable to terminal phases, while psychological/spiritual and functional status for bed mobility, eating, and transfers increased. A robust prediction model achieved areas under the curves (AUCs) of 0.94, 0.94, 0.920, and 0.96 for stable, unstable, deteriorating, and terminal phases, respectively. CONCLUSIONS: Critical PCOC items distinguishing between PCOC phases were identified, enabling the development of an accurate prediction model. This model enhances hospice care quality by facilitating timely interventions and adjustments based on patients' PCOC phases.

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Hospice care is designed to support the medical and psychosocial needs of individuals with serious illness and their caregivers through the dying process. Some individuals, though, leave hospice prior to death, generally referred to as disenrollment or a "live discharge." Live discharge from hospice is a common and often distressing issue for hospice patients, their caregivers, and also for hospice professionals and agencies. This paper discusses common issues surrounding live discharge that clinicians and other healthcare professionals should consider when dealing with live discharge in their own clinical practices. Where applicable, we provide practical steps for hospice and palliative care clinicians to better support patients and families through this critical care transition. Further, we offer strategic directions interprofessional clinicians can take to affect systemic change to improve live discharge experiences.

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OBJECTIVES: Hospice family caregivers (CGs) may experience poor emotional health and diminished quality of life (QOL) secondary to stressors that accompany home-based end-of-life caregiving. Innovative flexible strategies are needed to support hospice CGs in their homes. Being outdoors in nature enhances well-being but is often not accessible to home-based CGs. The purpose was to evaluate the feasibility/acceptability, and preliminary emotional health and QOL outcomes of a 5-day nature-based virtual reality (VR) intervention. METHODS: A pre-post design was used. Hospice CGs engaged in self-selected 10 min nature experiences via VR headset over 5 days. Preintervention surveys included demographics and the PROMIS-29 QOL measure (physical/social function, anxiety/depressive symptoms, fatigue, sleep and pain). Postintervention surveys included acceptability/feasibility surveys, PROMIS-29 and a VR-related symptom checklist. Data analysis included descriptives and paired t-tests. RESULTS: 15 CGs (mean 61.13±12.47 years; 12 females) completed the study. Findings demonstrated high acceptability (14.46±1.77; range 0-16); feasibility (13.93±2.43;range 0-16). Adverse VR symptoms were minimal. PROMIS-29 overall scores were significantly improved following the 5-day intervention (pre: 66.33±8.47; post: 61.07±7.83,p=0.01). Paired t-tests showed significant pre-post changes in anxiety (t=2.206, p<0.05) and favourable trends on other QOL dimensions. CONCLUSIONS: Feasibility/acceptability and QOL data support further testing of VR nature immersive experiences in the home environment with larger more diverse representative samples.

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Background: Patients with cancer use the internet to inform medical decision making. Objective: To examine the content of ChatGPT responses to a hypothetical patient question about decision making in advanced cancer. Design: We developed a medical advice-seeking vignette in English about a patient with metastatic melanoma. When inputting this vignette, we varied five characteristics (patient age, race, ethnicity, insurance status, and preexisting recommendation of hospice/the opinion of an adult daughter regarding the recommendation). ChatGPT responses (N = 96) were coded for mentions of: hospice care, palliative care, financial implications of treatment, second opinions, clinical trials, discussing the decision with loved ones, and discussing the decision with care providers. We conducted additional analyses to understand how ChatGPT described hospice and referenced the adult daughter. Data were analyzed using descriptive statistics and chi-square analysis. Results: Responses more frequently mentioned clinical trials for vignettes describing 45-year-old patients compared with 65- and 85-year-old patients. When vignettes mentioned a preexisting recommendation for hospice, responses more frequently mentioned seeking a second opinion and hospice care. ChatGPT's descriptions of hospice focused primarily on its ability to provide comfort and support. When vignettes referenced the daughter's opinion on the hospice recommendation, approximately one third of responses also referenced this, stating the importance of talking to her about treatment preferences and values. Conclusion: ChatGPT responses to questions about advanced cancer decision making can be heterogeneous based on demographic and clinical characteristics. Findings underscore the possible impact of this heterogeneity on treatment decision making in patients with cancer.

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Palliative care is a comprehensive approach aimed at improving the quality of life for patients and their families. The symptom burden and care needs of patients with end-stage, non-malignant diseases are similar to those experienced by patients with advanced cancer. Therefore, the World Health Organization (WHO) has recommended the expansion of palliative care to encompass a broad spectrum of diseases. However, in Korea, the adoption of palliative care for non-malignant conditions remains markedly low, presenting numerous challenges that differ from those associated with cancer. Key barriers to implementing hospice care for non-malignant diseases include the difficulty in predicting end-of-life and a general lack of awareness about hospice palliative care among healthcare providers, patients, and their families. Additionally, there is a risk that suggesting palliative care to patients with non-malignant diseases might be misinterpreted as an endorsement by healthcare providers to cease treatment or abandon the patient. This article explores strategies to broaden the scope of hospice and palliative care for patients with non-malignant diseases.

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BACKGROUND: Countries with formal policies for palliative care, and advanced and integrated practices in this field, such as Portugal, face challenges in achieving excellence in care, particularly in home-based assistance. Issues include care coordination among providers, confusion regarding the roles of each health care professional in the network, and a lack of monitoring and evaluation of actions. Our objective was to analyze the implementation of palliative care in primary health care in Portugal. METHODS: We conducted a qualitative, descriptive, and exploratory study in Portugal involving health care professionals with experience in palliative care. The data were collected through semistructured interviews and focus groups between March and October 2023. Eighteen health care professionals participated. We used the Alceste software for lexicographic analysis. The research was authorized by an Ethics Committee. RESULTS: Four classes were identified; classes 1 and 2, comprising 77% of the corpus, addressed the study objectives. Participants highlighted inequitable access, strategic development plans with unattainable short-term goals; and low literacy. They emphasized the importance of legislation, professional training initiatives for generalist palliative care at home, and early referral. Home-based challenges included professionals' lack of exclusive dedication, absence of 24/7 coverage, and unavailability of capable family caregivers. The networks' response to hospital admissions and patient transitions from hospital to home, with access to the specialized team, was also inadequate. CONCLUSIONS: Health care professionals aim to increase patients' time spent at home, reduce emergency department visits, and minimize hospitalizations by leveraging the resources of the national palliative care network. In addition to investments to sustain network implementation and legally guaranteed palliative care rights, the country must focus on measurable indicators for evaluating and monitoring actions, providing better guidance in the short, medium, and long term.

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Although many large Chinese cities have begun to implement hospice services, hospice care is still a relatively new concept in many parts of the country, especially in smaller cities. The purpose of this study was to gain a better understanding of health care providers' (physicians and nurses) perceptions of the facilitators and barriers to hospice care implementation in a fourth-tier city. Using a qualitative descriptive approach, semi-structured, open-ended interviews were conducted with 15 health care providers. Two major categories for developing hospice care were identified: (a) prospective facilitators and (b) perceived barriers. In addition, there is currently much ambiguity regarding what agency should oversee hospice services if implemented, who should be responsible for payment, the importance of developing interdisciplinary care teams and concerns about worker shortages. Future research is encouraged to investigate attitudes towards hospice care across various local healthcare systems and to promote the development of local hospice care support.

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The expansion of hospice care worldwide has been received differently by medical communities in different societies. Nonetheless, existing efforts to explain how culture affects the reception of hospice care are inadequate. On the basis of fieldwork conducted in Chinese medical institutions and care facilities between 2017 and 2022, this paper draws on a theoretical framework that distinguishes between declarative culture and nondeclarative culture at the personal level to explain the discrepancies between healthcare professionals' beliefs regarding the value of hospice care and their daily healthcare practice. Moreover, this paper uses the concept of cultural scaffolding to demonstrate that the culture of hospice care and the culture of medical institutions are not separate, independent entities but rather evolve together to produce new and local forms of hospice care in the Chinese context. This analysis helps clarify the obstacles and opportunities associated with hospice care in China and contributes to existing research on the reception of hospice care worldwide.

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PURPOSE: Improving end-of-life (EOL) quality for terminally ill cancer patients is crucial. However, associations between hospice/palliative care and EOL quality, as perceived by patients, are underreported. We aimed to examine the impact of palliative care consultative services on the EOL quality during cancer patients' last six months. METHODS: In this prospective, longitudinal study, 174 cancer patients were divided into a palliative care consultative services group (n = 65) or a non palliative care consultative services group (n = 109). The impact of palliative care consultative services on EOL quality, assessed using the Quality of Dying and Death (QODD) scale at the first and last assessments within the patients' last six months, was analyzed by linear regression with generalized estimating equations, adjusting for covariates. RESULTS: Cancer patients received palliative care consultative services a median of 34.0 days before death. There were significant main effects of groups, indicating that patients receiving palliative care consultative services had better QODD total scores (ß [95% confidence interval] = 2.12 [0.32,3.93], p = .021), death preparation (3.80 [1.71,5.89], p < .001), and treatment preferences than the reference group (3.27 [0.90,5.64], p = .007). No group differences were found in other dimensions, including symptom and personal care, whole person concern, and time with family. CONCLUSION: Palliative care consultative services significantly improved cancer patients' perceptions of death preparation, treatment preferences, and the QODD total score. Therefore, healthcare professionals should offer palliative care consultative services to cancer patients, initiate early referrals for such care, and implement effective and individualized interventions to enhance EOL quality.

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The reuse of real-world symptom monitoring data is essential in improving the quality of hospice care. A framework for achieving this is a Learning Health System, in which the development of a well-defined dataset is essential. This paper discusses the challenges in the design of a comprehensive dataset, focusing on variations in two electronic health record systems and divergent care processes.

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Predicting lifespan much more accurately is important for the palliative care team and the families they accompany. However, the way physicians estimate survival time has a gap between the real conditions. This is the first study to use a senseless wearable sensor to collect electrocardiograms from hospice care patients and explore the final moments of patients' lives by analyzing heart rate variability.

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BACKGROUND: Patients from underrepresented racial and ethnic groups (URGs) in the United States (US) experience disparities in accessing palliative care (PC) at the end of life (EOL). Additionally, little effort has been made to understand their experiences with PC. OBJECTIVES: To identify and synthesize existing literature on PC experiences among adults from URGs in nursing homes, community settings, and hospitals in the US. METHODS: Guided by the Joanna Briggs Institute methodological recommendation and Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews, we conducted a scoping review. We searched PubMed, EMBASE, CINAHL, Scopus, and ProQuest Dissertations & Theses Global from inception to January 2024. RESULTS: We included five studies representing Hispanic/Latino, American Indian, African/Black American, and Chinese individuals. Data were organized around two themes: navigating PC pathway and choices and practices during PC. Navigating PC pathway theme highlights that despite the several barriers URGs face when accessing PC, they seek PC services due to their limited formal family assistance in managing their chronic conditions and pain. The choices and practices during PC theme emphasize the roles URG family members play in EOL care, the patient's care preferences, and their spiritual practices and beliefs related to EOL care. CONCLUSION: This scoping review reveals limited literature about URG experiences with PC and highlights the need for more studies to focus on making PC services more accessible to URGs and providing culturally sensitive care to meet the needs of the diverse growing US population.

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BACKGROUND: Homeless adults experience a significant symptom burden when living with a life-limiting illness and nearing the end of life. This increases the inequalities that homeless adults face while coping with a loss of rootedness in the world. There is a lack of palliative and end of life care provision specifically adapted to meet their needs, exacerbating their illness and worsening the quality of their remaining life. AIM: To identify interventions and models of care used to address the palliative and end of life care needs of homeless adults, and to determine their effectiveness. METHODS: Standard systematic reviewing methods were followed, searching from 1 January 2000 the databases: Ovid MEDLINE, EMBASE, SCOPUS, Web of Science, CINAHL and PsycInfo. Results were reported following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and described using a narrative synthesis. Study quality was assessed using Hawker's Quality Assessment Tool. RESULTS: Nine studies primarily focused on: education and palliative training for support staff; advance care planning; a social model for hospice care; and the creation of new roles to provide extra support to homeless adults through health navigators, homeless champions or palliative outreach teams. The voices of those experiencing homelessness were rarely included. CONCLUSION: We identified key components of care to optimise the support for homeless adults needing palliative and end of life care: advocacy; multidisciplinary working; professional education; and care in the community. Future research must include the perspectives of those who are homeless.

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Background: The coronavirus disease (COVID-19) pandemic has caused significant global mortality and left a substantial number of bereaved individuals in its wake while reshaping healthcare delivery and profoundly affecting families coping with loss. During the pandemic, public health measures and the fear of getting COVID have reshaped grieving for families, adding emotional layers and complexities. This was further compounded by bereavement challenges, including changes to gatherings that have altered social norms and limited families in honoring loved ones, causing further distressing. Purpose: To elucidate experiences of families who had a hospitalized terminally ill family member during the COVID-19 pandemic and identify themes from the existing literature that can inform clinical practice related to how healthcare providers care for individuals and their families during palliative care going forward. Methods: This scoping review delved into qualitative studies sourced from peer-reviewed literature found in PubMed, CINAHL, and MEDLINE databases. Results: A thorough search yielded 298 articles, of which 10 were included in the present review. Four themes were identified: the importance of communication, the challenges and effects of separation from loved ones, changed rituals and bereavement, and access to services and support. Implications for Practice: The restrictions and fear imposed by the COVID-19 pandemic has significantly altered patient and family care dynamics, disrupting customary face-to-face visits and increasing emotional strain for families, while highlighting the necessity for personalized end-of-life care. Integrating supportive frameworks and utilizing telehealth platforms or hybrid care models will be crucial in addressing the complexities of grief and loss experienced by patients, families, and caregivers during and after the pandemic.

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BACKGROUND: Falls are a significant concern in healthcare settings. While comprehensive strategies to prevent falls are employed in hospitals, there is a lack of information regarding falls within inpatient palliative care units. METHOD: This retrospective cohort study analysed fall incidence, characteristics and outcomes in a metropolitan inpatient palliative care unit over a 1 year period. Falls were identified using the online incident reporting system and patient characteristics, fall risk assessment and prevention measures were obtained through the electronic patient records. RESULTS: During the study period, there were 61 falls by 51 patients out of a total of 525 admitted patients. The incidence of falls was 9.7% and the rate of falls was 5.8 falls per 1000 bed days for all admitted patients. Though more than half of falls resulted in no injury, 41% of patients with falls died within a week post-fall. Fall risk assessment was completed for 97% of patients at the time of the fall. CONCLUSION: This study contributes to the understanding of falls in inpatient palliative care units. Fall risk assessment and prevention measures did not appear to alter the rate of falls among patients who fell. Fall prevention strategies need to be tailored to meet patient autonomy, end of life goals and maintain healthcare standards.

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Rationale & Objective: Planning and delivering treatment pathways that integrate end-of-life care, frailty assessment, and enhanced supportive care is a service priority. Despite this, people with kidney failure are less likely to have an advance care plan and receive hospice and palliative care compared with other chronic illness populations. This is linked to health professionals feeling unskilled initiating conversations around future treatment and care options. This article describes research underpinning the development of a guide for kidney health professionals discussing end-of-life and advance care planning options with people with kidney failure and family members. Study Design: The study comprised 2 parts: an initial cross-sectional qualitative approach using in-depth interviews with older adults with kidney failure and (bereaved) carers followed by resource development with input from multiple stakeholders. Setting & Participants: Older adults with kidney failure and (bereaved) carers recruited from 2 renal units in the North of England and by online advertisements with national United Kingdom-based kidney patient charities. Resource development included input from co-applicants, independent advisory committee, patient and public involvement team, multidisciplinary health professionals and academics in the United Kingdom and Denmark. Analytical Approach: Thematic analysis was used to analyze the data. Results: Twenty-seven people were interviewed: older adults with kidney failure (n = 18), carers (n = 5), bereaved carers (n = 4). Five themes are described: the context within which end-of-life conversations take place, preferences for end-of-life treatment and care, family members' role and needs in supporting people with kidney failure at the end-of-life, expectations and experience of dialysis treatment, and beliefs and experiences of death and dying. Limitations: Participants were mainly White, British, and receiving hemodialysis. Conclusions: People with (lived) experience of kidney failure informed a guide which aims to build on health professionals existing skills and improve confidence having conversations about future treatment and care. Kidney teams have expressed interest implementing the guide in practice and within their broader communications training packages.

Delivering treatment pathways integrating end-of-life care, frailty assessment, and enhanced supportive care is a service priority. Despite this, people with kidney failure are less likely to have an advance care plan and receive hospice and palliative care compared with other chronic illness populations. This article describes how people with (lived) experience of kidney failure informed a guide to build on health professionals existing skills and improve confidence having conversations about future treatment and care. The study comprised 2 parts: cross-sectional qualitative approach using in-depth interviews with older adults with kidney failure and (bereaved) carers followed by resource development with input from coapplicants, an independent advisory committee, a patient and public involvement team, multidisciplinary health professionals, and academics.

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Objective: To understand the lived experience of healthcare workers who provide palliative care to adolescents and young adults living with advanced cancer. Methods: Interpretative phenomenological analysis was the design of this study. Hospice healthcare workers from four pediatric hospices across Canada were recruited through purposive sampling. Semistructured in-person interviews were conducted. Results: Eighteen hospice healthcare workers participated. Two superordinate themes were identified. First, balancing on the tightrope of uncertainty wherein hospice healthcare workers strive to do their best while aiming to take the path of least regret. This theme was underscored by a notion of doing for the adolescents and young adults. Second, acting as a proxy revolves around the importance of fostering relationships with adolescents and young adults through honesty and transparency. The cycle of protection between adolescents and young adults, families, and healthcare providers was emphasized. Conclusions: An action-focused orientation when supporting adolescents and young adults was shared by the healthcare workers. The need to do for adolescents and young adults and the need to protect not only the people they care for but also themselves. More exploration is needed on how healthcare workers who care for adolescents and young adults can be supported while better understanding coping mechanisms.

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BACKGROUND: Palliative care (PC) refers to providing patients with physical, psychological, mental, and other care and humanistic care services in a multidisciplinary collaborative mode with end-of-stage patients and family members as the centre. The PC screening tool (PCST) was developed to identify individuals who may benefit from PC services and is widely assumed to improve patient outcomes. OBJECTIVES: The purpose is to understand which specific PCST has been applied to clinical patients and to analyse and summarise the impact of using these tools on patient outcomes. METHODS: A systematic review of articles published on PCST was performed in PubMed, Web of Science, CINAHL and MEDLINE in January 2024. All original research articles on PCST fulfilling the following eligibility criteria were included (1) utilisation and evaluation of tools was the primary objective and (2) at least one patient outcome was reported. RESULTS: A total of 22 studies were included, 12 studies used a prospective study, 4 studies used a non-RCT and 6 studies used an RCT. The studies were heterogeneous regarding study characteristics, especially patient outcomes. In total, 24 different patient outcomes were measured, of which 16 outcomes measured in 12 studies significantly improved. CONCLUSIONS: We found that the majority of included studies reported that implementing PCST can improve patient outcomes to some extent, especially when used to improve in reducing hospitalisation time and patient readmission rate. However, there is a lack of high-quality research on this widely used screening tool.

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Aim: To analyze the causes of the controversy caused by "death with dignity" in China, and to provide some useful thoughts for the practical exploration of "death with dignity." Subject and methods: By combing the periodical literature, legal texts and practice, we find that the Medical Regulations of Shenzhen Special Economic Zone, which was revised and passed by China in 2022, recognized the legal effect of "living will" for the first time in legislation, which triggered a wide-ranging social discussion on "death with dignity" and brought many controversies. Results: Due to the influence of traditional culture, policies and laws, medical service supply capacity and other factors, death with dignity suffers from great practical resistance. Conclusion: The exploration of "death with dignity" system needs to start with the problems encountered in practice, focusing on cultivating a good system implementation environment, strengthening the top-level design of "death with dignity" system, and improving the national social security system for hospice care.

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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.

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