The knowledge, attitude and behavior on the palliative care among neonatal nurses: what can we do.

BACKGROUND: Neonatal nurses should provide timely and high-quality palliative care whenever necessary. It's necessary to investigate the knowledge, attitude and behavior of palliative care among neonatal nurses, to provide references and evidences for clinical palliative care. METHODS: Neonatal intensive care unit (NICU) nurses in a tertiary hospital of China were selected from December 1 to 16, 2022. The palliative care knowledge, attitude and behavior questionnaire was used to evaluate the current situation of palliative nursing knowledge, attitude and behavior of NICU nurses. Univariate analysis and multivariate logistic regression analysis were used to analyze the influencing factors. RESULTS: 122 nurses were finally included. The average score of knowledge in neonatal nurses was 7.68 ± 2.93, the average score of attitude was 26.24 ± 7.11, the score of behavior was 40.55 ± 8.98, the average total score was 74.03 ± 10.17. Spearman correlation indicated that score of knowledge, attitude and behavior of palliative care in neonatal nurses were correlated with the age(r = 0.541), year of work experience(r = 0.622) and professional ranks and titles(r = 0.576) (all P < 0.05). Age (OR = 1.515, 95%CI: 1.204 ~ 1.796), year of work experience (OR = 2.488, 95%CI: 2.003 ~ 2.865) and professional ranks and titles (OR = 2.801, 95%CI: 2.434 ~ 3.155) were the influencing factors of score of knowledge, attitude and behavior of palliative care (all P < 0.05). PUBLIC CONTRIBUTION: NICU nurses have a positive attitude towards palliative care, but the practical behavior of palliative care is less and lack of relevant knowledge. Targeted training should be carried out combined with the current situation of knowledge, attitude and practice of NICU nurses to improve the palliative care ability and quality of NICU nurses.

Patients' and caregivers' perception of multidimensional and palliative care in amyotrophic lateral sclerosis - protocol of a German multicentre study.

INTRODUCTION: Amyotrophic lateral sclerosis (ALS) is an inevitably fatal condition that leads to a progressive loss of physical functioning, which results in a high psychosocial burden and organizational challenges related to medical care. Multidimensional and multiprofessional care is advised to meet the complex needs of patients and their families. Many healthcare systems, including Germany, may not be able to meet these needs because non-medical services such as psychological support or social counselling are not regularly included in the care of patients with ALS (pwALS). Specialised neuropalliative care is not routinely implemented nor widely available. Caregivers of pwALS are also highly burdened, but there is still a lack of support services for them. METHODS: This project aims to assess the perceptions and satisfaction with ALS care in Germany in pwALS and their caregivers. This will be achieved by means of a cross-sectional, multicentre survey. The examination will assess, to which extend the patients' needs in the six domains of physical, psychological, social, spiritual, practical and informational are being met by current care structures. This assessment will be linked to mental well-being, subjective quality of life, attitudes toward life-sustaining measures and physician-assisted suicide, and caregiver burden. The study aims to recruit 500 participants from nationwide ALS centres in order to draw comprehensive conclusions for Germany. A total of 29 centres, mostly acquired via the clinical and scientific German Network for Motor Neuron Diseases (MND-NET), will take part in the project, 25 of which have already started recruitment. PERSPECTIVE: It is intended to provide data-based starting points on how current practice of care in Germany is perceived pwALS and their caregivers and how it can be improved according to their needs. Planning and initiation of the study has been completed. TRIAL REGISTRATION: The study is registered at ClinicalTrails.gov; NCT06418646.

Scope of services provided to childhood cancer patients by the Brazilian Pediatric Palliative Care Network.

Introduction: Brazil is a developing and an Upper Middle Income, categorized by the World Bank. Therefore, it is a country that needs a special vision for children with oncological diseases who require Pediatric Palliative Care. This study aimed to understand the specificities of services that provide oncology services in comparison to those that do not provide oncological care. Methods: This is a descriptive, cross-sectional, and online survey study. A questionnaire was created by a multidisciplinary group of leaders from the Brazilian Pediatric Palliative Care Network and then the survey was distributed using a snowball strategy. Results: Of the 90 services that answered the questionnaire, 40 (44.4%) attended oncologic patients. The Southeast represented most of the services (57.57%), followed by the Northeast, with 18.89% (17 services), the South with 12.22% (11 services), and the Center West with 8.89% (8 services). No differences were observed in access to opioid prescriptions between the services. It was observed that those services that attended oncologic patients had a tendency to dedicate more time to Pediatric Palliative Care. Discussion: The distribution of services that cover oncology and those that do not, are similar in the different regions of Brazil. In Brazil, there are difficulties in accessing opioids in pediatrics: access to opioid prescriptions without differences revealed that even pediatric oncologists might have difficulty with this prescription, and this should improve. It is concluded that education in Pediatric Palliative Care is the key to improvements in the area.

Guideline "Parkinson's disease" of the German Society of Neurology (Deutsche Gesellschaft für Neurologie): concepts of care.

INTRODUCTION: In 2023, the German Society of Neurology published a new guideline on Parkinson's disease. An important section dealt with PD care concepts, which represent a particularly dynamic field of PD research, including their implementation in clinical practice. Parkinson's disease is the second most common age-associated neurodegenerative disease. Current estimates of the number of cases in the population describe a significant increase in prevalence in Germany by 2030 with higher proportions in rural areas, which also have a lack of sufficient PD care resources. RECOMMENDATIONS: In comparison with other international guidelines, which have so far mentioned palliative care and Parkinson's nurses in particular, the German S2k guideline expands the recommended concepts of PD care to include PD day clinics, inpatient complex treatment, and PD networks. CONCLUSION: Concepts of PD care guidelines are necessary because of the complex and rapidly evolving field of PD care provision. If applied appropriately, the potential for optimized care can be exploited and both the patient burden and the economic burden can be reduced. Given that modern care concepts have so far only been applied in a few regions, it is often impossible to generate broad evidence-based data, so that the evaluation of PD care concepts is partly dependent on expert opinion.

Is caregiver sleep quality an important clinical issue?

Sleep quality is directly related to general health and quality of life. Caregivers' sleep disturbances affect not only their own health, but also the optimal care of their patients, with negative consequences such as neglect and medication errors. This study was conducted prospectively in the palliative care unit. The participants were divided into two groups: the caregivers and the control group. The caregiver groups were categorized into two subgroups: family and paid caregivers. The sleep quality of the caregivers was evaluated with the Pittsburgh Sleep Quality Index (PSQI). The demographics, body mass index, educational level, the presence of chronic diseases and medications, need for spiritual support, daytime sleepiness, duration of caregiving, nighttime awakening, and tea/coffee consumption were recorded. The study included 250 caregivers (female: 74.8%, mean age: 50.6 ± 12.1) and 103 control group members. Family caregivers significantly had an advanced age, lower educational level, more chronic diseases, and medications, need for spiritual support, and longer duration of caregiving compared to the paid caregivers (p = 0.018, < 0.001, 0.001, 0.005, < 0.001, and 0.003, respectively). The total PSQI scores of caregivers were significantly higher in the FDR, family group, females, those with need of spiritual support, and tea/coffee consumption close to bedtime (p = 0.002 < 0.004. 0.026. < 0.001, and 0.022, respectively). The fact that the sleep quality of family group caregivers is worse than that of paid caregivers may prevent healthy medical service delivery. The provision of care by paid professional caregivers will improve quality of care and quality of life.

Palliative care in dermatooncology - Current practice in German dermatooncological centers and specialist offices.

BACKGROUND: Dermato-oncology patients are often treated in certified skin cancer centers or dermato-oncological specialist offices. Especially in higher tumor stages, patients develop symptoms, either disease-related or due to therapy-related side effects, requiring treatment. Despite a markedly improved prognosis since the introduction of targeted therapies and immunotherapies, advance care planning is required in progressive disease. It is unclear how palliative care of skin cancer patients is currently organized in dermato-oncology. PATIENTS AND METHODS: In a nationwide survey, all certified skin cancer centers and dermato-oncological specialist offices in Germany were contacted and asked to participate in this anonymized survey. RESULTS: Overall, 45 responses (42%) were received. The majority (98%) of the respondents screen the patients on a regular basis for distressing symptoms, and all centers are connected to palliative medical care providers. Only 5% of the medical staff members have the additional qualification "palliative medicine". In 68% of the participating institutions, the opportunity for care planning is offered to patients. For 89%, palliative care is relevant for everyday work, and 82% desire more research opportunities on this topic. CONCLUSIONS: This survey has shown that palliative care plays a major role in dermato-oncological work. Given that only a small proportion of the staff have received specialized training in palliative care, however, an increase of this proportion would be desirable for comprehensive care.

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.

Psychosocial and emotional management of work experience in palliative care nurses: A qualitative exploration.

BACKGROUND: Palliative care, a crucial aspect of healthcare, faces challenges in psychosocial and emotional management among nurses. With an increasing need for palliative services globally, addressing the emotional well-being of nurses becomes pivotal. AIM: To explore nurses' psychosocial and emotional work experiences in a palliative care department. The focus is on understanding the challenges, identifying coping strategies, and assessing the impact on professional and private life when facing those experiences. METHODS: A phenomenologic-hermeneutical study involving semi-structured interviews was conducted to comprehend the lived experiences of ten nurses working in a hospital's palliative care department in Spain. Hermeneutic analysis was employed to extract patterns and insights from their experiences. The COREQ checklist was used to report this study. FINDINGS: Palliative care nurses perceived insufficient preparation in emotional management, grappling with complex family interactions and unique work dynamics. They highlighted the significance of self-protection strategies, experience, clinical sessions, and external resources. Limited training in emotional resilience and challenges posed by the COVID-19 pandemic emerged as organisational barriers. Nurses expressed a desire for enhanced training and resources. CONCLUSION: The study uncovered a deficiency in the emotional preparedness of palliative care nurses, impacting their professional and personal lives. Despite positive aspects, the emotional toll necessitates attention and intervention. IMPLICATIONS FOR NURSING POLICY: Comprehensive emotional training for palliative care nurses, addressing barriers, providing resources, and acknowledging emotional labour is necessary. Reinstating paused training sessions and considering specific challenges like those posed by the pandemic are vital. Supporting nurses in their professional and private lives is crucial for sustaining quality care in palliative care departments.

Cost-utility analysis of a palliative care program in Colombia.

BACKGROUND: The economic assessment of health care models in palliative care promotes their global development. The purpose of the study is to assess the cost-effectiveness of a palliative care program (named Contigo) with that of conventional care from the perspective of a health benefit plan administrator company, Sanitas, in Colombia. METHODS: The incremental cost-utility ratio (ICUR) and the incremental net monetary benefit (INMB) were estimated using micro-costing in a retrospective, analytical cross-sectional study on the care of terminally ill patients enrolled in a palliative care program. A 6-month time horizon prior to death was used. The EQ-5D-3 L questionnaire (EQ-5D-3 L) and the McGill Quality of Life Questionnaire (MQOL) were used to measure the quality of life. RESULTS: The study included 43 patients managed within the program and 16 patients who received conventional medical management. The program was less expensive than the conventional practice (difference of 1,924.35 US dollars (USD), P = 0.18). When compared to the last 15 days, there is a higher perception of quality of life, which yielded 0.25 in the EQ-5D-3 L (p < 0.01) and 1.55 in the MQOL (P < 0.01). The ICUR was negative and the INMB was positive. CONCLUSION: Because the Contigo program reduces costs while improving quality of life, it is considered to be net cost-saving and a model with value in health care. Greater availability of palliative care programs, such as Contigo, in Colombia can help reduce existing gaps in access to universal palliative care health coverage, resulting in more cost-effective care.

The meaning of culture in nursing at the end of life - an interview study with nurses in specialized palliative care.

BACKGROUND: The countries of the world are becoming increasingly multicultural and diverse, both as a result of growing migration, of people fleeing countries at war but also due to increased mobility related to labour immigration. Culture is a broad concept where the definitions focus on learned and shared values, traditions, and beliefs of a group of individuals. People's culture affects health and perceptions of illness as well as treatment, symptoms, and care. Moreover, people who are at the end of life, live and exist within all levels and contexts of care. Specialized palliative care requires that the nurse has sufficient knowledge and skills to be responsible for meeting the patient's nursing needs also on a cultural level, regardless of cultural affiliation. The aim of the study was to highlight nurses' experiences of the meaning of culture when caring for patients at the end of life in specialized palliative care. METHODS: The study was conducted with a qualitative design and inductive approach. Semi-structured interviews were conducted with twelve nurses in western Sweden. Data were analysed using qualitative content analysis. RESULTS: The nurses had an awareness of culture as a phenomenon and how it affected palliative care at the end of life. The results showed two categories, Awareness of the impact of culture on nursing and Culture's impact and influence on the nurse's mindset and approach, consisting of seven subcategories that highlight the nurse's experience. It emerged that there are differences between cultures regarding notions of dying and death, who should be informed, and treatments. There were also challenges and emotions that arose when cultural preferences differed among everyone involved. A person-centred approach allowed for recognition of the dying person's culture, to meet diverse cultural needs and wishes. CONCLUSION: Providing culturally competent care is a major challenge. There are often no routines or methods prescribed for how nurses should relate to and handle the diversity of cultural notions that may differ from the values and cornerstones of palliative care. Having a person-centred approach as strategy can help to better manage the situation and provide equitable care on terms that respect cultural diversity.

Normality and compassionate care: experiences from advanced cancer patients in their last time at home.

BACKGROUND: Many cancer patients prefer to receive palliative treatment at home, as it allows them to be in a familiar and comfortable environment. Integrating Advance Care Planning (ACP) into routine practice in primary healthcare helps patients and their relatives prepare for end-of-life (EoL) care in accordance with patients' preferences. This includes the option to spend their final days at home if desired. The aim of this study was to gain insights from experiences of advanced seriously ill cancer patients at home while receiving palliative treatment and being engaged in ACP within primary healthcare settings. METHOD: This study employed a qualitative design, utilizing individual, semi-structured interviews that were analysed through reflexive thematic analysis, employing an abductive approach with a latent-level focus. The study included interviews with 12 participants with cancer who were receiving palliative care, had an estimated lifetime under 3 months, and had undergone an organized ACP approach in primary healthcare, documented with a palliative plan. RESULTS: Participants emphasized the importance of (1) Preserving normality at home, maintaining a sense of routine, comfort, and familiarity in the face of present and future challenges. The top obstacles for success identified by participants included (1a) The challenge of deterioration and the dual aspects of (1b) The value and burden of family caregivers. Cancer treatment placed a significant demand on patients due to side effects. Family caregivers played a crucial role for participants, providing support in daily life and serving as a key factor in the overall decision to which extend they are able to involve in support and care at home in the future. (2) Compassionate health care personnel (HCP) made a difference by fostering a culture of understanding participants' concerns, fears, and preferences, which was a key element that built and maintained trust for the participants. (3) Preparing for the future, especially EoL discussions initiated by healthcare personnel, was deemed important but, at times, uncomfortable for participants as it confronted them with reality. Guidance from ACP provided them with a sense of certainty and control. CONCLUSION: Preserving normality at home, along with the desire to stay at home for as long as possible, is a crucial goal for advanced cancer patients. Consistent professional communication and care in primary healthcare play a key role in building and maintaining trust, as well as fostering a sense of certainty and control for the participants.

Career Impact of Palliative Care Fellowship Training for Nurse Practitioners.

Background: Postgraduate fellowship training for nurse practitioners (NP) in palliative care can ameliorate workforce shortages; however, currently there are few NP fellowships and little evidence about outcomes, such as retention in hospice and palliative nursing, job satisfaction, or professional contributions. Objective: To describe the impact of palliative care fellowship training on the careers of NP alumni. Methods: A survey was electronically distributed to all NP alumni of an interprofessional palliative care fellowship since adult and pediatric nursing cohorts were added (2009-2022). Results: Most respondents still worked in hospice and/or palliative care; a majority of them engaged in professional activities beyond clinical work and reported high career satisfaction. Alumni endorsed multiple benefits of postgraduate fellowship except for post-fellowship compensation. Conclusions: NP palliative care fellowship alumni reported multiple career benefits including job satisfaction, professional accomplishment, and ongoing employment at their training institutions.

Treatment with Antithrombotics in the Last Year of Life-Incidence of Bleeding and Side Effects After Deprescribing.

Background: Patients in palliative care are often treated with antithrombotics, even in the late stages of disease. Clear guidelines regarding deprescribing are lacking. Objective: The aims of this study were to investigate bleeding as a side effect of antithrombotic treatments the last year in life and map the timing of deprescribing. Methods: A retrospective cohort study was performed. All medical records were screened for deceased patients admitted to a palliative care unit in Stockholm, Sweden, over a 3-year period. Patients with antithrombotics were identified; data on bleeding, and on side effects due to deprescribing, were extracted from the medical records. Log-binomial models were used to explore factors associated with bleeding. Results: Of 1501 patients, 897 were treated with antithrombotics during the last year of life (mean age 75 years, 41% women). Of these, 56% continued treatment up until the last 3 days of life. Of the 897 patients, 144 (16%) had at least one bleeding during the treatment. The risk for bleeding was significantly higher for men with prostate cancer compared to other cancer forms, adjusted relative risk 1.9 (95% CI 1.1-3.2). No difference in risk for bleeding was found between sex, age groups, type of antithrombotics, or indication. Two patients (0.2%) developed strokes after antithrombotics were deprescribed. Conclusions: Treatment with antithrombotics during the last year of life is associated with a high risk of bleeding. In this cohort, men with prostate cancer seemed to have more side effects of bleeding than other groups. Few experienced side effects from deprescribing.

Successful Use of Propofol After Failed Palliative Sedation in Patients With Refractory Symptoms.

Context: Propofol is a general anesthetic used in multiple clinical scenarios. Despite growing evidence supporting its use in palliative care, propofol is rarely used in palliative sedation. Reluctance toward the adoption of propofol as a sedative agent is often associated with fear of adverse events such as respiratory arrest. Objectives: We aimed to describe efficacy and safety of palliative sedation in refractory sedation with propofol using a protocol based on low, incremental dosing. Methods: A retrospective observational study featuring inpatients receiving sedative treatment with propofol in our palliative care unit in Madrid (Spain) between March 1, 2018 and February 28, 2023, following a newly developed protocol. Results: During the study period, 22 patients underwent sedation with propofol. Propofol was used successfully to control different refractory symptoms, mainly psychoexistential suffering and delirium. All patients had undergone previous failed attempts at sedation with other medications (midazolam or lemovepromazine) and presented risk factors for complicated sedation. All patients achieved satisfactory (profound) levels of sedation measured with the Ramsay Sedation Scale, but total doses varied greatly between patients. Most patients (17, 77%) received combined therapy with propofol and other sedative medications to harness synergies. The median time between start of sedation with propofol and death was 26.0 hours. No cases of apnea or death during induction were recorded. Conclusion: A protocol for palliative sedation with propofol based on low, incremental dosing, with the option of administering an initial induction bolus, shows excellent results regarding adequate levels of sedation, without observing apnea or respiratory depression. Our results promote the use of propofol to achieve palliative sedation in patients with refractory symptoms and risk factors for complicated sedation at the end of life.

Medical costs of Swedish nursing home residents at the end of life: a retrospective observational registry study.

BACKGROUND: There are many studies of medical costs in late life in general, but nursing home residents' needs and the costs of external medical services and interventions outside of nursing home services are less well described. METHODS: We examined the direct medical costs of nursing home residents in their last year of life, as well as limited to the period of stay in the nursing home, adjusted for age, sex, Hospital Frailty Risk Score (HFRS), and diagnosis of dementia or advanced cancer. This was an observational retrospective study of registry data from all diseased nursing home residents during the years 2015-2021 using healthcare consumption data from the Stockholm Regional Council, Sweden. T tests, Wilcoxon rank sum tests and chi-square tests were used for comparisons of groups, and generalized linear models (GLMs) were constructed for univariable and multivariable linear regressions of health cost expenditures to calculate risk ratios (RRs) with 95% confidence intervals (95% CIs). RESULTS: According to the adjusted (multivariable) models for the 38,805 studied nursing home decedents, when studying the actual period of stay in nursing homes, we found significantly greater medical costs associated with male sex (RR 1.29 (1.25-1.33), p < 0.0001) and younger age (65-79 years vs. ≥90 years: RR 1.92 (1.85-2.01), p < 0.0001). Costs were also greater for those at risk of frailty according to the Hospital Frailty Risk Score (HFRS) (intermediate risk: RR 3.63 (3.52-3.75), p < 0.0001; high risk: RR 7.84 (7.53-8.16), p < 0.0001); or with advanced cancer (RR 2.41 (2.26-2.57), p < 0.0001), while dementia was associated with lower medical costs (RR 0.54 (0.52-0.55), p < 0.0001). The figures were similar when calculating the costs for the entire last year of life (regardless of whether they were nursing home residents throughout the year). CONCLUSIONS: Despite any obvious explanatory factors, male and younger residents had higher medical costs at the end of life than women. Having a risk of frailty or a diagnosis of advanced cancer was strongly associated with higher costs, whereas a dementia diagnosis was associated with lower external, medical costs. These findings could lead us to consider reimbursement models that could be differentiated based on the observed differences.

The impact of palliative care on the frailty-stroke continuum: from theoretical concepts to practical aspects.

With a constant increase in prevalence and incidence worldwide, stroke remains a public health issue in the 21st century. Additionally, population aging inevitably leads to increased vulnerability in the general population, a clinical state known as frailty. While there are adequate guidelines on the treatment of stroke in the acute setting, there are a lot of gaps regarding the chronic management of stroke patients, particularly the frail ones. From the therapeutic point of view, palliative care could be the key to offering complex and individualized treatment to these frail chronic stroke patients. In the context of the heterogeneous data and incomplete therapeutic guidelines, this article provides a new and original perspective on the topic, aiming to increase awareness and understanding and improve palliative care management in stroke patients. Based on current knowledge, the authors describe a new concept called the frailty-stroke continuum and offer a detailed explanation of the intricate stroke-frailty connection in the first part. After understanding the role of palliative care in managing this kind of patients, the authors discuss the most relevant practical aspects aiming to offer an individualized framework for daily clinical practice. The novel approach consists of developing a four-step scale for characterizing frail stroke patients, with the final aim of providing personalized treatment and correctly evaluating prognosis. By pointing out the limitations of current guidelines and the challenges of new research directions, this article opens the pathway for the better evaluation of frail stroke patients, offering a better perception of patients' prognosis.

Mechanisms of end-of-life communication contributing to optimal care at the end of life: a review of reviews.

BACKGROUND: End-of-life communication is an essential component of high-quality care, but its potential mechanisms for improving care are not well understood. OBJECTIVES: To summarise the potential mechanisms by which end-of-life communication may contribute to enhanced end-of-life care in any setting. DESIGN: An overview of systematic reviews, with a narrative synthesis of results. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed. Study quality was assessed using the AMSTAR (A MeaSurement Tool to Assess Reviews) tool. DATA SOURCES: CINAHL, MEDLINE, Cochrane, SSCI and PsycINFO databases, were searched from inception to January 2024. Manual searches were also conducted. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Systematic reviews (published in English) related to end-of-life communication, where the target population was adult patients in their last year of life, relatives, caregivers and/or healthcare professionals involved in communicating with dying patients. RESULTS: We reviewed 35 eligible studies. The reviews suggest potential mechanisms of effective end-of-life communication including collaborative decision-making, tailoring communication to individuals, using effective communication strategies and incorporating communication skills into practice. The reviews also highlighted barriers related to patients, professionals and organisations. CONCLUSION: This review highlights a nuanced understanding of potential mechanisms of end-of-life communication, emphasising the need for tailored training, policy enhancements and interprofessional collaboration. It calls on healthcare professionals to reflect on their practices, advocating for co-designing a person-centred communication model that addresses patient preferences at the end of life. Importantly, in culturally diverse contexts, there is a need for a communication paradigm that embraces diversity to provide truly empathetic and effective end-of-life care. This concise roadmap may foster compassionate, dignified and effective end-of-life communication. TRIAL REGISTRATION NUMBER: Protocol registered with PROSPERO (CRD42022271433, 29 March 2022).

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.

Perspectives of Chronic Kidney Disease Patients on Readiness for Advance Care Planning at Komfo Anokye Teaching Hospital, Ghana.

This study examined the impact of advance care planning (ACP) on the quality of life for patients with chronic kidney disease (CKD) at Komfo Anokye Teaching Hospital in Ghana. It specifically investigated patients' perspectives on their readiness for ACP. Utilizing a qualitative descriptive design, one-on-one interviews were conducted with CKD patients at the renal clinic, employing a semi-structured interview guide for thematic analysis of audio data. The findings revealed a gap in understanding among CKD patients, with participants acknowledging their vulnerability to renal failure, often linked to a medical history of diabetes and hypertension. Despite recognizing potential outcomes such as dialysis dependency or death, some patients retained hope for a cure, relying on faith. The initial kidney failure diagnosis induced shock and distress, leading many patients to prefer the comfort and familiarity of home-based care, including dialysis. Meanwhile, a minority favored hospital care to protect their children from psychological trauma. Most patients deemed legal preparations unnecessary, citing limited assets or a lack of concern for posthumous estate execution. These insights emphasize the necessity for targeted education and support in ACP to enhance patient outcomes in chronic kidney disease care and end-of-life planning.

Palliative care national plan implementation through stakeholder analysis.

BACKGROUND: National palliative care plans depend upon stakeholder engagement to succeed. Assessing the capability, interest, and knowledge of stakeholders is a crucial step in the implementation of public health initiatives, as recommended by the World Health Organisation. However, utilising stakeholder analysis is a strategy underused in public palliative care. OBJECTIVE: To conduct a stakeholder analysis characterising a diverse group of stakeholders involved in implementing a national palliative care plan in three rural regions of an upper-middle-income country. METHODS: A descriptive cross-sectional study design, complemented by a quantitative stakeholder analysis approach, was executed through a survey designed to gauge stakeholders' levels of interest and capability in relation to five fundamental dimensions of public palliative care: provision of services, accessibility of essential medicines, palliative care education, financial support, and palliative care vitality. Stakeholders were categorised as promoters (high-power, high-interest), latent (high-power, low-interest), advocates (low-power, high-interest), and indifferent (low-power and low-interest). Stakeholder self-perceived category and knowledge level were also assessed. RESULTS: Among the 65 surveyed stakeholders, 19 were categorised as promoters, 34 as advocates, 9 as latent, and 3 as indifferent. Stakeholders' self-perception of their category did not align with the results of the quantitative analysis. When evaluated by region and palliative care dimensions the distribution of stakeholders was nonuniform. Palliative care funding was the dimension with the highest number of stakeholders categorised as indifferent, and the lowest percentage of promoters. Stakeholders categorised as promoters consistently reported a low level of knowledge, regardless of the dimension, region, or their level of interest. CONCLUSIONS: Assessing the capability, interest, and knowledge of stakeholders is a crucial step when implementing public health initiatives in palliative care. It allows for a data-driven decision-making process on how to delegate responsibilities, administer financial resources, and establish governance boards that remain engaged and work efficiently.