Maneuvering between cultures: The reception of hospice care in the Chinese medical community.

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.

Destitute and dying: interventions and models of palliative and end of life care for homeless adults - a systematic review.

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.

Navigating Uncertainty: The Impact of COVID-19 on Families of Terminally Ill Patients.

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.

Palliative Care Experiences Among Adults From Underrepresented Racial and Ethnic Groups in the United States: A Scoping Review.

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.

Down Syndrome: Evaluating Disparities in Place of Death in the United States Using Centers for Disease Control and Prevention's Wide-Ranging Online Data for Epidemiologic Research (CDC-WONDER) Database Over 22 Years.

INTRODUCTION: The Uniform Determination of Death Act (UDDA) ensures that individuals with irreversible cessation of circulatory, respiratory, or brain functions receive timely palliative care. Our research has focused on identifying disparities in mortality among individuals with Down syndrome (DS) based on gender, age, racial groups, and geographic regions within the United States over 22 years. This study aims to analyze differences in the location of death, including hospitals, nursing homes, hospice care facilities, and unspecified locations, considering demographic and regional variables. METHODOLOGY: Utilizing a cross-sectional observational study design, we extracted data from the Centers for Disease Control and Prevention's Wide-ranging Online Data for Epidemiologic Research (CDC-WONDER) database, specifically targeting deaths coded under the International Classification of Diseases, 11th Revision (ICD-11) code "Q-90." This analysis, covering 1999 to 2020, segmented the data by age, gender, race, and United States Census regions. Death locations were categorized into home/hospice, medical facilities, and nursing/other facilities. Data analysis was conducted using Microsoft Excel, and the Autoregressive Integrated Moving Average (ARIMA) model was applied for statistical assessments. RESULTS: Our analysis included 22604 deaths related to DS, as recorded in the CDC-WONDER database from 1999 to 2020. The majority of these deaths occurred in medical or nursing facilities, with home or hospice deaths accounting for 6106 cases and other locations for 5.29% of deaths. Univariate logistic regression was used to identify predictors of home or hospice deaths, revealing a trend of increasing deaths in these settings over time. CONCLUSIONS: Between 1999 and 2020, there was a notable increase in the number of individuals with DS dying at home or in hospice care, especially among those aged 55-64. Female individuals and those identified as white experienced higher mortality rates than other demographic groups. This shift highlights the need to understand the disparity in places of death within this population, ensuring equitable access to quality end-of-life care for all individuals with DS.

Survey on hospice care attitude of family members of advanced cancer patients at different ages.

BACKGROUND: Hospice care plays an important role in improving the quality of life of advanced cancer patients, but controversy remains over whether age affects the attitudes of family members toward hospice care. AIM: To investigate the attitudes of family members of advanced cancer patients of different ages toward hospice care. METHODS: The study participants were 175 family members of patients with advanced cancer from January 2020 and October 2022. The participants were divided into youth (< 40 years, n = 65), middle-aged (40-60 years, n = 59), and elderly (> 60 years, n = 51) groups. Researchers investigated and compared the degree of awareness regarding hospice care, attitudes, and whether the family members of patients would choose hospice care. RESULTS: Among the family members of 175 patients, approximately 28% (49/175) were aware of hospice care. Awareness of hospice care, the proportion of hospice care acceptance and adaptation attitudes, and the proportion of those who chose hospice care in the youth group were higher in the middle-aged and elderly groups (P < 0.05). No statistically significant difference was found in these three indicators between the middle-aged and elderly groups (P > 0.05). Hospice care was chosen mainly to relieve pain and reduce unnecessary treatment, whereas the reasons for not choosing hospice care were mainly distrust and ethical concerns. CONCLUSION: The family members of patients with advanced cancer had relatively low awareness of hospice care, while youth had a higher awareness of hospice care, acceptance, and adaptation attitudes, and were more willing to choose hospice care.

Differences in End-of-Life Care Between Patients Who Died of Cancer Diseases and Those Who Died of Noncancer Diseases.

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.

Providing clarity: communicating the benefits of palliative care beyond end-of-life support.

Background: Palliative care affords numerous benefits, including improvements in symptom management, mental health, and quality of life, financial savings, and decreased mortality. Yet palliative care is poorly understood and often erroneously viewed as end-of-life care and hospice. Barriers for better education of the public about palliative care and its benefits include shortage of healthcare providers specializing in palliative care and generalist clinicians' lack of knowledge and confidence to discuss this topic and time constraints in busy clinical settings. Objectives: Explore and compare the knowledge, values, and practices of community-dwelling adults 19 years and older from Nebraska about serious illness and end-of-life healthcare options. Design: Secondary analysis of cross-sectional data collected in 2022 of 635 adults. We examined the fifth wave (2022) of a multiyear survey focusing on exploring Nebraskans' understanding of and preferences related to end-of-life care planning. Methods: Descriptive statistics and chi-square tests to compare results between groups. Univariable and multivariable logistic regression analyses examine associations of variables as to knowledge of hospice and palliative care. Results: While 50% of respondents had heard a little or a lot about palliative care, 64% either did not know or were not sure of the difference between palliative care and hospice. Those who reported being in poor health were not more likely to know the difference between palliative care and hospice compared to those reporting being in fair, good, or excellent health. Conclusion: This study offers insight into the knowledge and attitudes about palliative care among community-dwelling adults, 19 years and older living in Nebraska. More effort is needed to communicate what palliative care is, who can receive help from it, and why it is not only for people at end of life. Advance care planning discussions can be useful in offering clarity.

Factors Affecting Life-Sustaining Treatment Decisions and Changes in Clinical Practice after Enforcement of the Life-Sustaining Treatment Decision (LST) Act: A Tertiary Hospital Experience in Korea.

Purpose: In Korea, the act on hospice and palliative care and decisions on life-sustaining treatment (LST) was implemented on February 4, 2018. We aimed to investigate relevant factors and clinical changes associated with LST decisions after law enforcement. Materials and Methods: This single-center retrospective study included patients who completed LST documents using legal forms at Asan Medical Center from February 5, 2018, to June 30, 2020. Results: 5896 patients completed LST documents, of which 2704 (45.8%) signed the documents in person, while family members of 3,192 (54%) wrote the documents on behalf of the patients. Comparing first year and following year of implementation of the act, the self-documentation rate increased (43.9% to 47.2%, p=0.014). Moreover, the number of LST decisions made during or after ICU admission decreased (37.8% vs. 35.2%, p=0.045), and the completion rate of LST documents during chemotherapy increased (6.6% vs. 8.9%, p=0.001). In multivariate analysis, age < 65 (OR, 1.724; 95% CI, 1.538-1.933; p<0.001), unmarried status (OR, 1.309; 95% CI, 1.097-1.561; p=0.003), palliative care consultation (OR, 1.538; 95% CI, 1.340-1.765; p<0.001), malignancy (OR, 1.864; 95% CI, 1.628-2.133; p<0.001), and changes in timing on the first year versus following year (OR, 1.124, 95% CI, 1.003-1.260, p=0.045) were related to a higher self-documentation rate. Conclusion: Age < 65, unmarried status, malignancy, and referral to a palliative care team were associated with patients making LST decisions themselves. Furthermore, the subject and timing of LST decisions have changed with the LST act.

Hospice inpatient care models: cross-sectional inequality survey.

OBJECTIVES: Hospices provide a range of services including inpatient units (IPUs) and care in people's homes. 40 000-50 000 patients use IPUs in the UK per year. Little published data exist on IPU models. This paper explores the structure and funding of IPU across the Southwest (SW) of England (population 5.6 million), alongside impact of COVID-19. METHODS: An electronic survey of all 13 IPUs. Data collated, tabulated and compared with national commissioning guidance. RESULTS: A 92% survey response rate revealed large variation in bed availability per 250 000 of SW population: 2.5-18.2. Referrals and admissions per IPU bed per year ranged from 16 to 38.2 (or 39-127 per 100 000 population) and 21.7 (mean), respectively. There was significant workforce variability: 1.3-12.7 nurses per 7.5 hospice beds, 1.2-7.2 consultants per 20 hospice beds, varying multidisciplinary team members with many unfilled posts. National Health Service (NHS) funding ranged from 10% to 75% of total costs. During COVID-19, 4 of 12 hospices reduced bed capacity, while half described increased integration with other teams outside of the hospice. CONCLUSION: There is significant regional variability suggesting inequality in hospice bed availability per 250 000 population. There is also considerable variability in workforce, alongside the proportion of NHS funding. Such variability implies little is known about the optimal IPU model. This provides new meaningful information about the structure and funding of hospices, with further research needed to consider these differences on the impact on patient and family experiences and outcomes. The sustainability and opportunities of integration and collaboration across care settings are also paramount.

Sitting with you in uncertainty: a reflective essay on the contribution of social work to end-of-life care.

Death may be the only certainty in life, but for palliative care patients and their carers, it is anything but. How long is there left? Will a hospice bed be available? What new loss (big or small), will tomorrow bring? Research suggests that the poor management of uncertainty in palliative care can significantly impact patient outcomes as well as the experience of bereaved families. Social workers cannot mitigate this uncertainty, but they can support individuals to recognise and engage with it. Often, this can create tensions with their personal instinct to remove distress, as well as their professional drive to 'fix things'. By overcoming these challenges and embracing their ability to find ways forward 'in the midst of the messy stuff', they model a constructive mode of behaviour that patients and other multidisciplinary professionals can then mirror.

Small Steps, Big Vision: using multi-stage qualitative research to develop a grab-and-go guide to support utilisation of the Ambitions for Palliative and End of Life Care framework.

BACKGROUND: The Ambitions for Palliative and End of Life Care is a national framework for local action in England co-produced by over 30 partners; little research has been conducted on how the Framework is received and used. This study sought to examine and support how people understand, interpret, and implement the Framework. METHODS: A multi-stage qualitative methodology involving four stages of data collection: (1) case study interviews, (2) focus groups, (3) interactive workshops, and (4) Evidence Cafés. From initial interviews, ongoing thematic data analysis informed the design and focus of subsequent stages as part of a process of knowledge transfer. RESULTS: A practical resource to support service provision and development was produced; a grab-and-go guide called "Small Steps, Big Visions". It focuses on the eight foundations in the Ambitions Framework, with additional guidance on collaboration and partnership working, and sharing learning. Each foundation is presented with a 'what' (definition), 'ask' (prompt questions), and 'examples in action' (drawn from case studies). CONCLUSIONS: Research can contribute to policy implementation to advance palliative and end of life care. The engagement and input of those responsible for implementation is key.

Knowledge and attitudes of physicians in Chile toward Do-Not-Attempt-Resuscitation orders: A cross-sectional nation-wide study.

Objective: Do-Not-Attempt-Resuscitation orders originated in the early 1960s with the establishment of advanced cardiopulmonary resuscitation. These orders aim to limit therapeutic efforts in cases where it may be futile. The decision not to resuscitate a patient is a process that involves a series of ethical, legal, and clinical considerations. Still, it also requires a process in which priority is given to the patients and their autonomy. The objective of this study was to describe the knowledge and attitudes of physicians working in Chile toward Do-Not-Attempt-Resuscitation orders. Methods: A cross-sectional study was conducted, in which a digital questionnaire was sent to physicians from different regions of Chile. Quantitative variables were analyzed using measures of central tendency and dispersion (e.g., median and interquartile range), while qualitative variables were evaluated using frequencies and percentages. Results: Four hundred and thirty-one physicians completed the survey. 85.4% were familiar with the ethical and legal guidelines for cardiopulmonary resuscitation and the rights and duties of the patient. 39.2% believed that patients should have the final decision Do-Not-Attempt-Resuscitation orders, especially if they themselves requested not to be resuscitated. 87.7% mentioned that the Do-Not-Attempt-Resuscitation orders should be reassessed if the patient's prognosis improves. In addition, it was found that the decision not to resuscitate was not always discussed with the patient or their family. Conclusions: The study revealed an ethical conflict regarding Do-Not-Attempt-Resuscitation orders and their management by Chilean physicians. Therefore, it is necessary to create recommendations and provide training to guide professionals in this process, which should also involve patients and their families.

Enhancing hospice care with psychological support and a nomogram to predict delirium in patients with advanced solid tumors.

To assesses the impact of integrating hospice care with psychological interventions on patient well-being and to introduce a predictive nomogram model for delirium that incorporates clinical and psychosocial variables, thereby improving the accuracy in hospice care environments. Data from 381 patients treated from September 2018 to February 2023 were analyzed. The patients were divided into a control group (n=177, receiving standard care) and an experimental group (n=204, receiving combined hospice care and psychological interventions) according to the treatment modality. The duration of care extended until the patient's discharge from the hospital or death. The experimental group demonstrated significant improvements in emotional well-being and a lower incidence of delirium compared to the control group. Specifically, emotional well-being assessments revealed marked improvements in the experimental group, as evidenced by lower scores on the Self-Rating Anxiety Scale (SAS) and Self-Rating Depression Scale (SDS) post-intervention. The nomogram model, developed using logistic regression based on clinical characteristics, effectively predicted the risk of delirium in patients with advanced cancer. Significant predictors in the model included ECOG score ≥3, Palliative Prognostic Index score ≥6, opioid usage, polypharmacy, infections, sleep disorders, organ failure, brain metastases, electrolyte imbalances, activity limitations, pre-care SAS score ≥60, pre-care SDS score ≥63, and pre-care KPS score ≥60. The model's predictive accuracy was validated, showing AUC values of 0.839 for the training cohort and 0.864 for the validation cohort, with calibration and Decision Curve Analysis (DCA) confirming its clinical utility. Integrating hospice care with psychological interventions not only significantly enhanced the emotional well-being of advanced cancer patients but also reduced the actual incidence of delirium. This approach, offering a valuable Nomogram model for precise care planning and risk management, underscores the importance of integrated, personalized care strategies in advanced cancer management.

California Hospice Ownership Changes From 2018-2020: A Spatial Analysis and Case Illustration.

Hospices in California have undergone significant and complicated ownership changes in recent years. Little is known about the impact of these ownership changes on hospices. The purpose of our longitudinal, retrospective descriptive study was to describe the ownership changes impacting hospices 2018 to 2021 in California. Using descriptive statistics, we measured characteristics of hospices with and without ownership changes employing public data from the California Home Health Agencies and Hospice Annual Utilization Report. Ownership change characteristics were measured via publicly available hospice provider and facility data. Spatial characteristics were additionally measured via latitude and longitude publicly available data. Our findings showed that ownership changes were significant and complicated. An influx of for-profit organizations into the California market was primarily responsible for these changes. Additionally, lack of corporate financial public disclosure and voluntary hospice accreditation, certification, and reporting result in a lack of free, publicly available, definitive comprehensive data on for-profit hospice ownership. This hinders information gathering on and provider/familial choice-making regarding hospices. Our study provides critical insight into the impact of ownership changes and lack of definitive, free, publicly available information on adult hospices in California caring for children and has important clinical, research, and policy implications.

[The oncologist, death and the pharmakon]. / L'oncologue, la mort et le pharmakon.

THE ONCOLOGIST, DEATH AND THE PHARMAKON. Stopping chemotherapy for patients treated in oncology is a difficult moment, feared by oncologists because it is often associated with abandonment or even failure in front of a resistant or aggressive disease. End-of-life chemotherapy is still common in oncology departments. However, it will be harmful if it causes side effects which alter the quality of life of patients or even hasten their death. But above all, this chemotherapy delays the implementation of appropriate palliative care support. Questioning the risk of hubris (excess) in some treatment, asking the relationship between the patient and his death, and prioritizing the quality of last moments is essential to best support patients on the path to the end o f life.

L'ONCOLOGUE, LA MORT ET LE PHARMAKON. L'arrêt des chimiothérapies des malades traités en oncologie est un moment difficile, redouté par les oncologues car souvent associé à un abandon, voire à un échec, face à une maladie résistante devenue trop agressive. La chimio thérapie de la fin de vie est encore fréquente dans les services d'oncologie. Elle est pourtant délétère si elle entraîne des effets indésirables qui altèrent la qualité de vie des malades, voire précipitent leur décès. Mais, surtout, cette chimiothérapie "de trop" retarde la mise en place d'un accompagnement adapté en soins palliatifs. Interroger le risque d'hubris de certains traitements, questionner le rapport à la mort du malade et privilégier la qualité du temps qui reste est pourtant essentiel pour accompagner au mieux les malades sur le chemin de la fin de vie.

Challenges in Palliative Care in Latin America: A Narrative Review.

In "graying" populations with extended lifespans and survivable forms of cancer, palliative services become increasingly important but may be difficult to introduce into public discourse, public policy, and healthcare systems. Latin America (LATAM) faces many challenges as it introduces and, in some cases, develops its palliative care programs; though the challenges faced here are in many ways universal ones, LATAM approaches may be unique and based on the region's specific culture, politics, and economics. This narrative review based on a literature search identified 10 main themes that can be interpreted as challenges and opportunities for palliative care in LATAM. These challenges are integrating palliation into healthcare systems; public policy and funding; therapeutic obstinacy; changing demographics; access to services; analgesia; the role of religion, spirituality, and folk medicine; social determinants of palliative care; low health literacy; and limited clinician training. Some of the LATAM nations have palliative programs and palliative care training in place while others are developing these systems. Integrating this care into existing healthcare and reimbursement systems has been a challenge. A notable challenge in LATAM is also access to care since palliative programs tend to cluster in metropolitan areas and create hardships for rural citizens to access them. The better-defined role of familial caregivers and telehealth may be important factors in the expansion of palliative care in LATAM and beyond.

The Importance of Providing Training to Informal Caregivers of Hospice Patients: Caregiver Experience With Hospice Care Based on Consumer Assessment of Healthcare Providers & Systems Surveys.

BACKGROUND: Informal caregivers aid hospice patients at the end of life. Little is known of their preparation and confidence in providing care, and how this relates to experiences of hospice care. OBJECTIVE: Examine factors associated with informal caregivers' rating of home hospice care. METHODS: Data come from 828 completed CAHPS® surveys mailed between January 2022 and December 2023 from a single non-profit Hospice organization. Multivariate logistic regression analyses examined the independent influence of various aspects of hospice care on ratings of hospice. RESULTS: Nine of every 10 respondents rated hospice care high (9 or 10). Most aspects of hospice care were rated favorably. Nearly all respondents felt the patient was treated with dignity and respect (96%). The measure with the greatest room for improvement was getting help as soon as needed (82% "always"). Multivariate analyses revealed 6 factors that independently predicted overall rating of hospice care. The strongest predictor was always getting help as soon as needed, followed by believing the hospice team cared about the patient. Three measures of caregiver training were significantly associated with higher ratings of hospice care being trained to: safely move the patient, what to do if patient became restless, and on pain medications. CONCLUSIONS: When informal caregivers feel trained to assess and manage the symptoms, they rate hospice care more favorably. Greater attention to informal caregiver training and support are imperative to improving hospice care.

Improving patients', carers' and primary care healthcare professionals' experiences of discharge communication from specialist palliative care to community settings: a protocol for a qualitative interview study.

BACKGROUND: Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care once such needs have been controlled. Effective communication between services is central to co-ordination of care to avoid the potential consequences of unmet needs, fragmented care, and poor patient and family experience. Discharge communications are a key component of care transitions. However, little is known about the experiences of those primarily receiving these communications, to include patients', carers' and primary care healthcare professionals. This study aims to have a better understanding of how the discharge communications from specialist palliative care services to primary care are experienced by patients, carers, and healthcare professionals, and how these communications might be improved to support effective patient-centred care. METHODS: This is a 15-month qualitative study. We will interview 30 adult patients and carers and 15 healthcare professionals (n = 45). We will seek a range of experiences of discharge communication by using a maximum variation approach to sampling, including purposively recruiting people from a range of demographic backgrounds from 4-6 specialist palliative care services (hospitals and hospices) as well as 5-7 general practices. Interview data will be analysed using a reflexive thematic approach and will involve input from the research and advisory team. Working with clinicians, commissioners, and PPI representatives we will co-produce a list of recommendations for discharge communication from specialist palliative care. DISCUSSION: Data collection may be limited by the need to be sensitive to participants' wellbeing needs. Study findings will be shared through academic publications and presentations. We will draft principles for how specialist palliative care clinicians can best communicate discharge with patients, carers, and primary care clinicians. These will be shared with clinicians, policy makers, commissioners, and PPI representatives and key stakeholders and organisations (e.g. Hospice UK) and on social media. Key outputs will be recommendations for a specialist palliative care discharge proforma. TRIAL REGISTRATION: Registered in ISRCTN Registry on 29.12.2023 ref: ISRCTN18098027.

Regional hospice and palliative care networks worldwide: scoping review.

BACKGROUND: Regional hospice and palliative care networks (RHPCNs) are increasingly being established to improve integrative care for patients with life-limiting illnesses. This scoping review aimed at identifying and synthesising international literature on RHPCNs, focusing on structures, outcomes, benefits, success factors and good practices. METHOD: Following Arksey and O'Malley's (2005) framework, a search of four electronic databases (CINAHL, Google Scholar, PubMed, Web of Science Core Collection) was conducted on 7 July 2023. Additionally, a manual search of reference lists of the identified articles was performed. Original research, qualification theses and descriptive reports on RHPCNs at a structural level were included. FINDINGS: Two researchers analysed 777 article abstracts, screened 104 full texts and selected 24 articles. The included studies predominantly used qualitative designs. RHPCNs self-identify as local stakeholders, employ coordination offices and steering committees, and actively recruit network partners. Outcomes included improved professional practices, enhanced quality of care, increased patient utilisation of regional care offerings and improved patient transitions between care providers. Success factors included clear coordination, transparent communication, strategic planning and resource-securing strategies. CONCLUSIONS: The analysis identified key RHPCN success factors such as effective communication and adaptive leadership. Despite the need for further research, the findings emphasise RHPCNs' potential to improve palliative care and encourage policymaker support. OTHER: This scoping review is part of the research project HOPAN, which aims at assessing and analysing RHPCNs in Germany. The project is funded by the German Innovation Fund of the Federal Joint Committee (G-BA) (Grant N° 01VSF22042; funding period: 01/2023-12/2024).