The first decade of the Danish Palliative Care Database: improvements and ongoing challenges in the quality and use of specialised palliative care.

BACKGROUND: Danish Palliative Care Database comprises five quality indicators: (1) Contact with specialised palliative care (SPC) among referred patients, (2) Waiting time of less than 10 days, (3) Proportion of patients who died from (A) cancer or (B) non-cancer diseases, and had contact with SPC, (4) Proportion of patients completing the patient-reported outcome measure at baseline (EORTC QLQ-C15-PAL), and (5) Proportion of patients discussed at a multidisciplinary conference. PURPOSE: To investigate changes in the quality indicators from 2010 until 2020 in cancer and non-cancer patients. Patients/material: Patients aged 18+ years who died from 2010 until 2020. METHOD: Register-based study with the Danish Palliative Care Database as the main data source. Indicator changes were reported as percentage fulfilment. RESULTS: From 2010 until 2020, the proportion of patients with non-cancer diseases in SPC increased slightly (2.5-7.2%). In 2019, fulfilment of the five indicators for cancer and non-cancer were: (1) 81% vs. 73%; (2) 73% vs. 68%; (3A) 50%; (3B) 2%; (4) 73% vs. 66%; (5) 73% vs. 65%. Whereas all other indicators improved, the proportion of patients waiting less than 10 days from referral to contact decreased. Differences between type of unit were found, mainly lower for hospice. INTERPRETATION: Most patients in SPC had cancer. All indicators except waiting time improved during the 10-year period. The establishment of the Danish Palliative Care Database may have contributed to the positive development; however, SPC in Denmark needs to be improved, especially regarding a reduction in waiting time and enhanced contact for non-cancer patients.

Children with palliative care needs - the landscape of the nordic countries.

BACKGROUND: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research collaboration initiative for children with palliative care needs was assembled in 2023. Building on this initiative, this paper presents an overview of pediatric palliative care (PPC) in the Nordic countries' (a) population characteristics, (b) care models and setting of care, (c) education and training, and (d) research. METHODS: The Nordic initiative researchers collaboratively gathered and assessed available data on the characteristics of PPC within Denmark, Finland, Greenland, Iceland, Norway, the Faroe Islands, Sweden, and Åland. Data were compiled in a matrix with population characteristics, models- and setting of care, education and training, and areas of research in a Nordic context. The findings are narratively and descriptively presented, providing an overview of Nordic PPC. RESULTS: In total, the Nordic child population comprises around six million children (0-19 years), of which about 41.200 are estimated to be living with a life-limiting and/or life-threatening condition. Healthcare services are provided through various care models, ranging from specialized care to homecare settings. Overall, there remain few opportunities for education and training with some exceptions. Also, Nordic research within PPC has been shown to be a growing field although much remains to be done. CONCLUSION: This overview is the first outline of the current PPC in Nordic countries. Although some differences remain important to acknowledge, overall, the strengths and challenges faced within PPC in the Nordic countries are comparable and call for joint action to increase evidence, services, and education to better serve the children, families, and healthcare personnel within PPC. Despite the varying structural premises for PPC, research endeavors aiming to provide evidence in this field seem increasing, timely and relevant for the Nordic countries, as well as the international context.

Paediatric oncologists' perspectives on Strategic solutions to develop Integrated Cancer Palliative Care: feedback intervention theory as an explanatory Framework.

BACKGROUND: Globally, children with cancer often experience delays in palliative care referral or are infrequently referred. Therefore, we conducted a qualitative study to gain insight from paediatric oncologists into what enables or deters palliative care referral. Strategic solutions to develop integrated palliative care was a critical study theme. In this paper, we have explained and interpreted these strategic solutions through the lens of feedback intervention theory. METHODOLOGY: The study findings were interpreted using Kumar's six-step approach that enabled systematic evaluation of a theory's appropriateness and alignment with the researcher's paradigm, methodology, and study findings. It also explained how theory informed analysis and elucidated challenges or the development of new models. The feedback intervention theory appraises the discrepancy between actual and desired goals and provides feedback to improve it. RESULTS: Strategic solutions generated from the study findings were coherent with the aspects elucidated in theory, like coping mechanisms, levels of feedback hierarchy, and factors determining the effect of the feedback intervention on performance. Paediatric oncologists suggested integrating palliative care providers in the team innocuously, improving communication between teams, relabelling palliative care as symptom control, and working with a skilled and accessible palliative care team. The paper proposes an infinite loop model developed from the study, which has the potential to foster integrated palliative care through excellent collaboration and continuous feedback. CONCLUSION: Applying feedback intervention theory can bridge the gap between actual and desired practice for integrated cancer palliative care in paediatric oncology.

Consensus-based recommendations for the development and expansion of palliative day care clinics in Germany: results of a Delphi study.

BACKGROUND: Needs-based, patient-oriented palliative care includes palliative day care clinics as a specialized semi-inpatient care offer. However, the establishment and development of these facilities has been unsystematic. Research is needed to strengthen their transparency and ensure their accessibility, quality, and structural adequacy. A national Delphi study was conducted to generate appropriate recommendations for the establishment and development of palliative day care clinics in Germany. METHODS: Recommendations were formulated from focus group data on the development and expansion of palliative day care clinics in Germany. Experts on in- and outpatient palliative care rated 28 recommendations for relevance and feasibility, respectively, using a 4-point Likert-type scale. Suggestions for improvement were captured via free text comments. Items were considered consented when more than 80% of the experts scored them 4 (strongly agree) or 3 (somewhat agree), regarding both relevance and feasibility. RESULTS: A total of 23 experts (32% response rate) completed three Delphi rounds. Following the first round, 10 of 28 recommendations were revised according to participants' comments; 1 recommendation was rejected. After the second round, 3 of these 10 recommendations were revised, while 3 were rejected. Consensus was achieved after the third round for 22 of the initial recommendations. CONCLUSIONS: The Delphi-consented recommendations provide a basis for the targeted evidence- and needs-based development of palliative day care clinics. The findings show a need for standards setting and the meaningful integration of these clinics into existing structures. TRIAL REGISTRATION: The present study was prospectively registered on April 20, 2020, with the German Clinical Trials Register (DRKS00021446).

Generalist, specialist, or expert in palliative care? A cross-sectional open survey on healthcare professionals' self-description.

BACKGROUND: In the Netherlands, palliative care is provided by generalist healthcare professionals (HCPs) if possible and by palliative care specialists if necessary. However, it still needs to be clarified what specialist expertise entails, what specialized care consists of, and which training or work experience is needed to become a palliative care specialist. In addition to generalists and specialists, 'experts' in palliative care are recognized within the nursing and medical professions, but it is unclear how these three roles relate. This study aims to explore how HCPs working in palliative care describe themselves in terms of generalist, specialist, and expert and how this self-description is related to their work experience and education. METHODS: A cross-sectional open online survey with both pre-structured and open-ended questions among HCPs who provide palliative care. Analyses were done using descriptive statistics and by deductive thematic coding of open-ended questions. RESULTS: Eight hundred fifty-four HCPs filled out the survey; 74% received additional training, and 79% had more than five years of working experience in palliative care. Based on working experience, 17% describe themselves as a generalist, 34% as a specialist, and 44% as an expert. Almost three out of four HCPs attributed their level of expertise on both their education and their working experience. Self-described specialists/experts had more working experience in palliative care, often had additional training, attended to more patients with palliative care needs, and were more often physicians as compared to generalists. A deductive analysis of the open questions revealed the similarities and distinctions between the roles of a specialist and an expert. Seventy-six percent of the respondents mentioned the importance of having both specialists and experts and wished more clarity about what defines a specialist or an expert, how to become one, and when you need them. In practice, both roles were used interchangeably. Competencies for the specialist/expert role consist of consulting, leadership, and understanding the importance of collaboration. CONCLUSIONS: Although the grounds on which HCPs describe themselves as generalist, specialist, or experts differ, HCPs who describe themselves as specialists or experts mostly do so based on both their post-graduate education and their work experience. HCPs find it important to have specialists and experts in palliative care in addition to generalists and indicate more clarity about (the requirements for) these three roles is needed.

Use of the supportive and palliative care indicators tool (SPICT™) for end-of-life discussions: a scoping review.

BACKGROUND: In order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify people with deteriorating health and unmet palliative care needs and to plan care. The SPICT™ tool was designed to assist with this. AIM: The aim was to examine the impact of the SPICT™ on advance care planning conversations and the extent of its use in advance care planning for adults with chronic life-limiting illness. METHODS: In this scoping review records published between 2010 and 2024 reporting the use of the SPICT™, were included unless the study aim was to evaluate the tool for prognostication purposes. Databases searched were EBSCO Medline, PubMed, EBSCO CINAHL, APA Psych Info, ProQuest One Theses and Dissertations Global. RESULTS: From the search results 26 records were reviewed, including two systematic review, two theses and 22 primary research studies. Much of the research was derived from primary care settings. There was evidence that the SPICT™ assists conversations about advance care planning specifically discussion and documentation of advance care directives, resuscitation plans and preferred place of death. The SPICT™ is available in at least eight languages (many versions have been validated) and used in many countries. CONCLUSIONS: Use of the SPICT™ appears to assist advance care planning. It has yet to be widely used in acute care settings and has had limited use in countries beyond Europe. There is a need for further research to validate the tool in different languages.

Toward enhanced decentralized palliative care services in Neno District, Malawi: a qualitative study.

BACKGROUND: Palliative care remains key in assisting patients who have life-threatening conditions. In most low- and middle-income countries, it is often offered through a centralized system with limitations, including Malawi. In 2014, the World Health Organization called for improving palliative care access through primary health care and community models. Malawi and Neno District subsequently decentralized palliative care delivery to local health centers. This qualitative study explored the decentralization of palliative care services in Neno District, Malawi. METHODS: The descriptive qualitative study was conducted between 2021 and 2022 in two conveniently selected health centers providing palliative care in the Neno District. Fourteen healthcare workers were purposefully selected to participate in two focus groups. Fifteen patients were conveniently selected and participated in three focus groups. Data was analyzed using deductive and inductive approaches. Focused group discussions were conducted in Chichewa (Malawi's official local language), audio recorded, transcribed, translated into English, and analyzed thematically. RESULTS: Four main themes emerged from the focus groups. Patients described positive relationships with healthcare workers built on trust and holistic care over time. Accessing care included transport, social support, time constraints, and distance issues. Facilities effectively responded to needs through coordinated care and follow-up. Decentralization was perceived to benefit patients by reducing travel challenges and improving local access to efficient and inclusive palliative care services. However, challenges with resources, distance, and social support remained. Limitations in sampling and missing participant details necessitate further research with broader sampling. CONCLUSION: Overall, the study provides empirical evidence that can optimize palliative care delivery in similar low-resource contexts by informing policies to address barriers through decentralized approaches.

The impact of specialized pediatric palliative care on advance care planning and healthcare utilization in children and young adults: a retrospective analysis of medical records of in-hospital deaths.

BACKGROUND: Pediatric palliative care supports children and young adults with life-limiting conditions and their families, seeking to minimize suffering and enhance quality of life. This study evaluates the impact of specialized palliative care (SPC) on advance care planning (ACP) and patterns of end-of-life care for patients who died in the hospital. METHODS: This is a retrospective cohort study of medical records extracted from a clinical data warehouse, covering patients who died aged 0-24 in an academic tertiary children's hospital in South Korea. Participants were categorized into before (2011-2013; pre-period) and after (2017-2019; post-period) the introduction of an SPC service. Within the post-period, patients were further categorized into SPC recipients and non-recipients. RESULTS: We identified 274 and 205 patients in the pre-period and post-period, respectively. ACP was conducted more and earlier in the post-period than in the pre-period, and in patients who received palliative care than in those who did not. Patients who received SPC were likely to receive less mechanical ventilation or cardiopulmonary resuscitation and more opioids. A multivariable regression model showed that earlier ACP was associated with not being an infant, receiving SPC, and having a neurological or neuromuscular disease. CONCLUSIONS: SPC involvement was associated with more and earlier ACP and less intense end-of-life care for children and young adults who died in the hospital. Integrating palliative care into routine care can improve the quality of end-of-life care by reflecting patients' and their families' values and preferences.

Knowledge, attitudes and practices of critical care unit personnel regarding pediatric palliative care: a cross-sectional study.

BACKGROUND: Few studies have evaluated the perceptions of healthcare providers in China regarding pediatric palliative care, particularly in critical care units (PICUs), where many children receive palliative care. To evaluate the knowledge, attitudes and practices of PICU personnel in China regarding pediatric palliative care. METHODS: This cross-sectional study was conducted in five cities in China (Shanghai, Suzhou, Chongqing, Chengdu and Yunnan) between November 2022 and December 2022. RESULTS: The analysis included 204 participants (122 females), with 158 nurses and 46 physicians. The average knowledge, attitude and practice scores were 9.75 ± 2.90 points (possible range, 0-13 points), 38.30 ± 3.80 points (possible range, 12-60 points) and 35.48 ± 5.72 points (possible range, 9-45 points), respectively. Knowledge score was higher for physicians than for nurses (P < 0.001) and for personnel with previous training in pediatric palliative care (P = 0.005). According to structural equation modelling knowledge had a direct positive effect on attitude (ß = 0.69 [0.28-1.10], p = 0.001), and indirect on practice (ß = 0.82 [0.36-1.28], p < 0.001); attitude had significant effect on practice as well (ß = 1.18 [0.81-1.56], p < 0.001). CONCLUSIONS: There is room for improvement in the knowledge, attitudes and practices of PICU personnel in China regarding pediatric palliative care. The findings of this study may facilitate the design and implementation of targeted education/training programs to better inform physicians and nurses in China about pediatric palliative care.

Towards proactive palliative care in oncology: developing an explainable EHR-based machine learning model for mortality risk prediction.

BACKGROUND: Ex-ante identification of the last year in life facilitates a proactive palliative approach. Machine learning models trained on electronic health records (EHR) demonstrate promising performance in cancer prognostication. However, gaps in literature include incomplete reporting of model performance, inadequate alignment of model formulation with implementation use-case, and insufficient explainability hindering trust and adoption in clinical settings. Hence, we aim to develop an explainable machine learning EHR-based model that prompts palliative care processes by predicting for 365-day mortality risk among patients with advanced cancer within an outpatient setting. METHODS: Our cohort consisted of 5,926 adults diagnosed with Stage 3 or 4 solid organ cancer between July 1, 2017, and June 30, 2020 and receiving ambulatory cancer care within a tertiary center. The classification problem was modelled using Extreme Gradient Boosting (XGBoost) and aligned to our envisioned use-case: "Given a prediction point that corresponds to an outpatient cancer encounter, predict for mortality within 365-days from prediction point, using EHR data up to 365-days prior." The model was trained with 75% of the dataset (n = 39,416 outpatient encounters) and validated on a 25% hold-out dataset (n = 13,122 outpatient encounters). To explain model outputs, we used Shapley Additive Explanations (SHAP) values. Clinical characteristics, laboratory tests and treatment data were used to train the model. Performance was evaluated using area under the receiver operating characteristic curve (AUROC) and area under the precision-recall curve (AUPRC), while model calibration was assessed using the Brier score. RESULTS: In total, 17,149 of the 52,538 prediction points (32.6%) had a mortality event within the 365-day prediction window. The model demonstrated an AUROC of 0.861 (95% CI 0.856-0.867) and AUPRC of 0.771. The Brier score was 0.147, indicating slight overestimations of mortality risk. Explanatory diagrams utilizing SHAP values allowed visualization of feature impacts on predictions at both the global and individual levels. CONCLUSION: Our machine learning model demonstrated good discrimination and precision-recall in predicting 365-day mortality risk among individuals with advanced cancer. It has the potential to provide personalized mortality predictions and facilitate earlier integration of palliative care.

Healthcare personnel's perspectives on health technology in home-based pediatric palliative care: a qualitative study.

BACKGROUND: In the context of pediatric palliative care, where the quality of life of children with life-limiting or life-threatening conditions is of utmost importance, the integration of health technology must support the provision of care. Research has highlighted the role of healthcare personnel when utilizing health technology in home-based pediatric palliative care, but specific knowledge of healthcare personnel's views on the technological relevance remains limited. Therefore, our study has explored potentials and limitations of health technology in home-based pediatric palliative care from the perspectives of healthcare personnel. METHODS: Our study utilized a qualitative, descriptive, and exploratory design, including five focus groups with a total of 22 healthcare personnel. The participants were selected from various health regions in Norway and were experienced in providing home-based pediatric palliative care. Using reflexive thematic analysis, we interpreted data obtained from focus groups, identified patterns, and developed themes. RESULTS: The analysis resulted in the development of three intersecting themes: balancing in-person interaction and time in home-based pediatric palliative care; exchange of information can improve timely and appropriate care; and the power of visual documentation in pediatric palliative care. The healthcare personnel acknowledged difficulties in fully replacing in-person interaction with health technology. However, they also emphasized potentials of health technology to facilitate information sharing and the ability to access a child's health record within interdisciplinary teams. CONCLUSION: The results underscored that technology can support pediatric palliative care but must be thoughtfully integrated to ensure an individualized patient-centered approach. To maximize the benefits of health technology in enhancing home-based pediatric palliative care, future research should address the limitations of current health technology and consider the opinions for information sharing between relevant healthcare team members, the child, and their family.

Barriers and drivers of public engagement in palliative care, Scoping review.

BACKGROUND: The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC. METHODS: Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database. KEYWORDS: Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators. RESULTS: Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities. CONCLUSION: Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated.

Virtual consultations: the experience of oncology and palliative care healthcare professionals.

OBJECTIVES: To maintain continuity of care during the Covid-19 pandemic, virtual consultations (VC) became the mainstay of patient-healthcare practitioner interactions. The aim of this study was to explore the views of oncology and palliative care healthcare professionals (HCPs) regarding the medium of VC. METHOD: A cross sectional mixed methodology observational study of oncology and palliative care HCPs, analysed via an inductive thematic approach. This was undertaken in accordance with relevant guidelines and regulations. RESULTS: 87 surveys were completed. Three master themes were identified. Personal, professional, and familial factors including patient age, illness and VC skillset all influenced practitioner's experience of VC. Relationships and connection were highlighted by survey respondents as important influences, with a perception that VC could reduce usual relationships with patients, compared to previous face-to-face consults. There was a perceived loss in these domains with VC. Sharing bad news and having challenging conversations was seen as particularly difficult via VC. Many survey respondents emphasized that they preferred to have first time consultations face-to-face, and not virtually. Within the domain of logistical and practical implications reduced travel and increased accessibility were seen as a significant benefit of VC. The inability to examine patients and concerns regarding missing clinical signs was emphasised as a significant worry, alongside the challenges faced with occasionally failing technology. CONCLUSION: VC were felt to have a role for those patients who are already known to professionals, where there was an established relationship. VC for difficult discussions and for unstable patients were felt to be inadequate. Triaging patient suitability prior to offering VC, with emphasis on the importance of patient choice, was seen as a priority in this new era of VC.

[State of palliative care in France]. / État des lieux des soins palliatifs en France.

STATE OF PALLIATIVE CARE IN France. France is facing an epidemiological context marked by an increase in the number of elderly and very elderly people (often polypathological and dependent), and in the number of people suffering from serious or degenerative chronic illnesses. Considering people's needs and providing them with support in their last period of life has become more time-consuming, requiring appropriate care. The end-of-life trajectories of French people are heterogeneous, with a diversity of palliative and end-of-life trajectories coexisting, depending on their pathologies, personal situations, and frailties. This observation, combined with a legislative framework that has been evolving since the 90s to strengthen the rights of patients and their families, has prompted public authorities to reform end-of-life care provision, so that it is effective wherever the end of life takes place, and in line with societal expectations. A palliative care network is currently being set up at regional level and will be gradually extended to each region. Based on currently available data, the Centre National des Soins Palliatifs et de la Fin de Vie (National Center for Palliative and End-of-Life Care) has published an atlas to provide a better understanding of the evolution of end-of-life care provision and activity in France, the key figures of which are summarized in this article. This situation remains incomplete due to the lack of identification of trained professionals and the care procedures performed, especially at home. The government's current ambition to strengthen dedicated territorial organizations based on personalized care and support plans is a response to the present and future challenges of organizing palliative and end-oflife care in France.

ÉTAT DES LIEUX DES SOINS PALLIATIFS EN France. La France fait face à un contexte épidémiologique marqué par une augmentation du nombre de personnes âgées, voire très âgées (souvent polypathologiques et dépendantes), et de celui de personnes atteintes d'une maladie chronique grave ou dégénérative. La prise en compte des besoins des personnes et leur accompagnement pendant leur dernière période de vie devenue plus longue nécessite une prise en charge adaptée. Les parcours de fin de vie des Français sont hétérogènes, faisant coexister une diversité de trajectoires palliatives et de fin de vie en fonction de leurs pathologies, leur situation personnelle et leurs fragilités. Ce constat ainsi qu'un cadre législatif évoluant depuis les années 1990 vers un renforcement des droits des personnes malades et de leurs proches engagent les pouvoirs publics en direction d'une réforme de l'offre en soins de la fin de vie afin qu'elle soit effective quel que soit le lieu et en adéquation avec les attentes sociétales. Une filière de soins palliatifs est en cours de structuration au niveau régional et est amenée à se décliner de manière graduée à l'échelle de chaque territoire. Sur la base des données actuellement disponibles, le Centre national des soins palliatifs et de la fin de vie publie un atlas pour mieux comprendre l'évolution de l'offre et de l'activité en matière d'accompagnement de la fin de vie en France, dont une synthèse des chiffres clés est proposée dans cet article. Cet état des lieux reste incomplet par manque d'identification des professionnels formés ainsi que des actes de soins réalisés, et ceci est d'autant plus vrai au domicile. L'ambition gouvernementale actuelle d'aller notamment vers un renforcement des organisations territoriales dédiées qui s'appuient sur des plans personnalisés de soins d'accompagnement constitue une réponse aux défis d'aujourd'hui et de demain pour l'organisation des soins palliatifs et de la fin de vie en France.

[Development plan for palliative care and end-of-life support 2021-2024]. / Plan de développement des soins palliatifs et accompagnement de la fin de vie 2021-2024.

DEVELOPMENT PLAN FOR PALLIATIVE CARE AND END-OF-LIFE SUPPORT 2021-2024. The 5th national Plan on palliative and end-of-life care aims to ensure universal access to palliative care in France. It is based on three axes: communication on palliative care and appropriation of end-of-life rights by each citizen and by each health professional; training professionals and supporting research; deployment of local care, strengthening of coordination, early integration of palliative care.

PLAN DE DÉVELOPPEMENT DES SOINS PALLIATIFS ET ACCOMPAGNEMENT DE LA FIN DE VIE 2021-2024. Le 5e Plan national sur les soins palliatifs et la fin de vie a pour objectif d'assurer un accès universel aux soins palliatifs en France. Il se décline autour de trois axes : la communication sur les soins palliatifs et l'appropriation des droits de la fin de vie par chaque citoyen et par chaque professionnel de santé ; la formation des professionnels et le soutien de la recherche ; le déploiement des prises en charge de proximité, le renforcement des coordinations, l'intégration précoce des soins palliatifs.

[Palliative and Supportive Dialysis: Current Practices and Recommendations for Best Clinical Practice].

"Palliative dialysis" is defined as the renal replacement therapy directed to patients living the most critical phases of illness and the end-of-life stage. Offering targeted dialysis prescriptions becomes imperative when health conditions, along with comorbidities, unfavorable prognosis and complications, do not allow standard dialysis to be started or continued. Management should also integrate adequate supportive care measures in both incident and prevalent patients. This document summarizes nephrological recommendations and scientifical evidence regarding the palliative approach to dialysis, and proposes operative tools for a good clinical practice. After planning and sharing the route of care ("shared-decision-making"), which includes multidimensional evaluation of the patient, a pathway of treatment should be started, focusing on combining the therapeutical available options, adequacy and proportionality of care and patients' preferences. We propose a framework of indications that could help the nephrologist in practicing appropriate measures of treatment in patients' frailest conditions, with the aim of reducing the burden of dialysis, improving quality of life, providing a better control of symptoms, decreasing the hospitalization rates in the end-of-life stage and promoting a home-centered form of care. Such a decisional pathway is nowadays increasingly needed in nephrology practice, but not standardized yet.

Development of palliative care clinical practice guidelines and referral care pathways for primary care practitioners in Pakistan.

BACKGROUND: Despite a large burden of life-limitingillness, there exists a dearth of services of palliative care in Pakistan. International guidelines have questionable applicability in Pakistan due to the socioeconomic differences. We generated a protocol describing the process of developing comprehensive palliative care guidelines and palliative care referral pathways for primary care practitioners to adopt in Pakistan. METHODS: A GRADE-ADOLOPMENT approach with modification has been employed to create guidelines for a Pakistani context. The "National Comprehensive Cancer Network Guidelines Insights: Palliative Care, Version 2.2021" was used as the source guideline. Recommendations from the source guideline were reviewed by two local palliative care specialists to either "Adopt," "Adapt" or "Exclude". The finalized recommendations were incorporated into the local palliative care guideline. Clinical diagnosis and referral pathways were made from the finalized guideline. Any gaps in management found in the pathways were filled by taking existing recommendations from other credible guidelines. RESULTS: Twenty-seven recommendations were adopted without modification. No recommendations were deemed to be adapted and 15 were excluded. The referral care pathways created were reflective of the local guideline and included elements of initial assessment, preliminary management, reassessment, and referral. 6 additional recommendations were made. CONCLUSION: The described clinical practice guidelines and primary care clinical referral pathways will aid to standardize palliative care provision in Pakistan. These can be used by other resource constrained settings to develop guidelines within their own local context.

Benchmarking palliative care practices in neurooncology: a german perspective.

PURPOSE: To benchmark palliative care practices in neurooncology centers across Germany, evaluating the variability in palliative care integration, timing, and involvement in tumor board discussions. This study aims to identify gaps in care and contribute to the discourse on optimal palliative care strategies. METHODS: A survey targeting both German Cancer Society-certified and non-certified university neurooncology centers was conducted to explore palliative care frameworks and practices for neurooncological patients. The survey included questions on palliative care department availability, involvement in tumor boards, timing of palliative care integration, and use of standardized screening tools for assessing palliative burden and psycho-oncological distress. RESULTS: Of 57 centers contacted, 46 responded (81% response rate). Results indicate a dedicated palliative care department in 76.1% of centers, with palliative specialists participating in tumor board discussions at 34.8% of centers. Variability was noted in the initiation of palliative care, with early integration at the diagnosis stage in only 30.4% of centers. The survey highlighted a significant lack of standardized spiritual care assessments and minimal use of advanced care planning. Discrepancies were observed in the documentation and treatment of palliative care symptoms and social complaints, underscoring the need for comprehensive care approaches. CONCLUSION: The study highlights a diverse landscape of palliative care provision within German neurooncology centers, underscoring the need for more standardized practices and early integration of palliative care. It suggests the necessity for standardized protocols and guidelines to enhance palliative care's quality and uniformity, ultimately improving patient-centered care in neurooncology.