A importância dos cuidados paliativos exercidos por médicos de família e comunidade na Atenção Primária à Saúde: uma revisão narrativa / The importance of palliative care performed by family practice doctors in primary health care: a narrative review / La importancia de los cuidados paliativos realizados por médicos de familia y comunitario en la Atención Primaria de Salud: una revisión narrativa

Introdução: A terminalidade é uma situação cada vez mais vivenciada nos serviços de saúde em razão da progressão da expectativa de vida da população e, consequentemente, do incremento de pacientes com doenças crônicas graves. No Brasil, os serviços de cuidados paliativos ainda se encontram centralizados nos serviços de atenção terciária. Entretanto, em diversos países, a Atenção Primária à Saúde tem sido a grande prestadora e coordenadora de cuidados paliativos dos usuários, em prol da descentralização dessa assistência e da promoção do cuidado integral. Objetivo: Realizar uma revisão narrativa da literatura, a fim de identificar a relação dos médicos de família e comunidade na atuação de cuidados paliativos na Atenção Primária à Saúde. Métodos: Revisão bibliográfica por meio do acesso às bases de dados: Portal da Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES), Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS), Scientific Electronic Library Online (SciELO) e PubMed. Foram selecionados 16 artigos, os quais foram submetidos a análise temática e posterior discussão das principais características que colaboram para a maior atuação dos médicos de família e comunidade em cuidados paliativos. Resultados: Observou-se a importância da atuação dos médicos de família e comunidade em cuidados paliativos no âmbito da Atenção Primária à Saúde, bem como a interligação entre as duas especialidades, os desafios existentes nesse caminho e os benefícios dessa prática. Conclusões: A oferta de cuidados paliativos pelos médicos de família e comunidade na atenção primária favorece o acesso e acompanhamento dos pacientes. Entretanto, a atuação dos profissionais das Equipes de Saúde da Família nessa linha de cuidado ainda é insuficiente em razão da escassa capacitação na área.

Introduction: Terminality is a situation increasingly experienced in healthcare services due to the progression of the population's life expectancy and, consequently, the increase in patients with serious chronic diseases. In Brazil, Palliative Care services are still centralized in tertiary care services. However, in many countries, Primary Health Care has been the major provider and coordinator of Palliative Care for users, in favor of decentralizing this assistance and promoting comprehensive care. Objective: To carry out a narrative literature review to identify the relationship of Family Practice Doctors in the performance of Palliative Care in Primary Health Care. Methods: Bibliographic review through access to databases: CAPES, LILACS, SciELO, and PUBMED. Sixteen articles were selected, which were submitted to thematic analysis and subsequent discussion of the main characteristics that contribute to the greater performance of Family Practice Doctors in Palliative Care. Results: The importance of Family Practice Doctors in Palliative Care within the scope of Primary Health Care was observed, as well as the interconnection between the two specialties, the challenges along this path, and the benefits of this practice. Conclusions: The offer of Palliative Care by Family Practice Physicians in Primary Care favors the access and monitoring of patients. However, the performance of the professionals in Family Health Teams in this line of care is still insufficient due to the lack of training in the area.

Introducción: La terminalidad es una situación cada vez más experimentada en los servicios de salud debido a la progresión de la esperanza de vida de la población y, en consecuencia, al aumento de pacientes con enfermedades crónicas graves. En Brasil, los servicios de Cuidados Paliativos todavía están centralizados en los servicios de atención terciaria. Sin embargo, en varios países, la Atención Primaria de Salud ha sido la principal proveedora y coordinadora de los Cuidados Paliativos para los usuarios, a favor de descentralizar esta asistencia y promover la atención integral. Objetivo: Realizar una revisión narrativa de la literatura, con el fin de identificar la relación de los Médicos de Familia y Comunitarios en la actuación de los Cuidados Paliativos en la Atención Primaria de Salud. Métodos: Revisión bibliográfica mediante acceso a bases de datos: Portal CAPES, LILACS, SciELO y PubMed. Fueron seleccionados dieciséis artículos, que fueron sometidos al análisis temático y posterior discusión de las principales características que contribuyen para una mayor actuación de los Médicos de Familia y Comunidad en Cuidados Paliativos. Resultados: Se constató la importancia del trabajo de los Médicos de Familia y Comunitarios en Cuidados Paliativos en el ámbito de la Atención Primaria de Salud, así como la interconexión entre las dos especialidades, los desafíos que existen en este camino y los beneficios de esta práctica. Conclusiones: La oferta de Cuidados Paliativos por Médicos de Familia y Comunitario en Atención Primaria favorece el acceso y seguimiento de los pacientes. Sin embargo, la actuación de los profesionales de los Equipos de Salud de la Familia en esta línea de atención aún es insuficiente debido a la falta de formación en el área.

Patient considerations of social media account management after death.

PURPOSE: Social media is widely used but few studies have examined how patients with advanced cancer want their accounts managed after death. The objective of this study was to determine the proportion of our patients with advanced cancer who have discussed the post-mortem management of their social media accounts with their family or friends. METHODS: This was a cross-sectional survey in which patients with advanced cancer at an outpatient Supportive Care Clinic at a tertiary cancer center completed a novel survey on social media use that assessed patients' social media use practices, attitudes and preferences, and reactions to the survey. RESULTS: Of 117 patients, 72 (61.5%) were women, and the mean age was 56.4 years old. We found that 24 (21%) of our patients have discussed their preferences for management of their social media accounts after death. Patients with a lower annual income were significantly more likely to report having such conversations (p = 0.0036). Completing the survey motivated 76 patients (67%) to discuss their social media accounts and 82 patients (71.3%) to explore how social media will be managed after their death. Half of our study participants reported social media as an important source of coping. CONCLUSION: Few patients have had conversations on the management of their accounts after death, although more were interested in exploring their options further. More research is needed to examine the role of social media as a digital legacy and a coping tool for patients with advanced cancer.

A Scoping Review of the Barriers and Facilitators to Clinician Engagement in Hospital-Based Palliative Care in Australian Hospitals.

Background: Current research has shown that inpatient palliative care (PC) services are under-utilized, poorly integrated, and frequently introduced too late during inpatient hospital stays. The aim of this study was to identify a comprehensive list of multi-disciplinary facilitators and barriers to inpatient PC in Australian hospitals through a scoping literature review. Methods: This review identified articles published since 2000 from 3 electronic databases (CINAHL Plus, MEDLINE and Embase), which included discussion of collaboration among non-palliative care clinicians and palliative care professionals in Australian hospitals. We used an inductive approach to identifying key domains of barriers and facilitators. Results: Thirty-four articles met inclusion criteria following full text review. Barriers and facilitators were categorized in 7 domains: (1) Patient concerns, (2) Family concerns, (3) Clinician knowledge, education, and experience in palliative care, (4) Recognition and acceptance of prognosis when a patient was dying or needing end of life treatment, (5) Reconciliation of individual and professional values around PC, (6) Clinician access to resources for PC in the hospital, and (7) Communication between the PC team and ward clinicians. Each domain included potentially substantial barriers to PC delivery and practice. However, given the small sample sizes and specialized settings of many included studies, it was difficult to draw conclusions on the relative significance of different barriers across hospitals. Conclusion: This review identified a number of barriers and facilitators across studies. Subsequent research needs to more comprehensively compare factors impacting PC use in order to improve implementation of PC across hospital settings.

Investigating Data Diversity and Model Robustness of AI Applications in Palliative Care and Hospice: Protocol for Scoping Review.

BACKGROUND: Artificial intelligence (AI) has become a pivotal element in health care, leading to significant advancements across various medical domains, including palliative care and hospice services. These services focus on improving the quality of life for patients with life-limiting illnesses, and AI's ability to process complex datasets can enhance decision-making and personalize care in these sensitive settings. However, incorporating AI into palliative and hospice care requires careful examination to ensure it reflects the multifaceted nature of these settings. OBJECTIVE: This scoping review aims to systematically map the landscape of AI in palliative care and hospice settings, focusing on the data diversity and model robustness. The goal is to understand AI's role, its clinical integration, and the transparency of its development, ultimately providing a foundation for developing AI applications that adhere to established ethical guidelines and principles. METHODS: Our scoping review involves six stages: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; (5) collating, summarizing, and reporting the results; and (6) consulting with stakeholders. Searches were conducted across databases including MEDLINE through PubMed, Embase.com, IEEE Xplore, ClinicalTrials.gov, and Web of Science Core Collection, covering studies from the inception of each database up to November 1, 2023. We used a comprehensive set of search terms to capture relevant studies, and non-English records were excluded if their abstracts were not in English. Data extraction will follow a systematic approach, and stakeholder consultations will refine the findings. RESULTS: The electronic database searches conducted in November 2023 resulted in 4614 studies. After removing duplicates, 330 studies were selected for full-text review to determine their eligibility based on predefined criteria. The extracted data will be organized into a table to aid in crafting a narrative summary. The review is expected to be completed by May 2025. CONCLUSIONS: This scoping review will advance the understanding of AI in palliative care and hospice, focusing on data diversity and model robustness. It will identify gaps and guide future research, contributing to the development of ethically responsible and effective AI applications in these settings. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/56353.

What do health professionals think about implementing psilocybin-assisted therapy in palliative care for existential distress? A World Café qualitative study.

OBJECTIVES: Promising studies show that psilocybin-assisted therapy relieves existential distress in patients with serious illnesses, a difficult condition to treat with current treatment options. There is growing interest in this therapy in palliative care. Canada recently amended its laws to allow physicians to request psilocybin for end-of-life distress. However, barriers to access remain. Since implementing psilocybin-assisted therapy within palliative care depends on the attitudes of healthcare providers willing to recommend it, they should be actively engaged in the broader discussion about this treatment option. We aimed (1) to identify issues and concerns regarding the acceptability of this therapy among palliative care professionals and to discuss ways of remedying them and (2) to identify factors that may facilitate access. METHODS: A qualitative study design and World Café methodology were adopted to collect data. The event was held on April 24, 2023, with 16 palliative care professionals. The data was analyzed following an inductive approach. RESULTS: Although participants were interested in psilocybin-assisted therapy, several concerns and needs were identified. Educational and certified training needs, medical legalization of psilocybin, more research, refinement of therapy protocols, reflections on the type of professionals dispensing the therapy, the treatment venue, and eligibility criteria for treatment were discussed. SIGNIFICANCE OF RESULTS: Palliative care professionals consider psilocybin-assisted therapy a treatment of interest, but it generates several concerns. According to our results, the acceptability of the therapy and the expansion of its access seem interrelated. The development of guidelines will be essential to encourage wider therapy deployment.

Proactive assessment of patient reported outcomes in ovarian cancer studies: a systematic review and call for action in future studies.

OBJECTIVE: This systematic review aims to evaluate the proactive or real-time assessment of patient reported outcomes in studies involving patients with ovarian cancer undergoing systemic therapy. METHODS: PubMed, Embase, and Cochrane databases were searched (from database inception until February 2022), and prospective ovarian cancer studies (experimental or observational) that incorporated patient reported outcomes, including quality of life, were included. The primary objective was to assess the ratio of studies incorporating real-time use of patient reported outcomes among those studies performing patient reported outcomes. A secondary objective was to describe the patient reported outcome reporting. The Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) 2020 checklist was followed. Descriptive statistics were used. RESULTS: 3071 articles were screened, with 117 included in the final analysis. Studies were published between 1990 and 2022, and consisted of 35 735 patients (median 140 patients per study; interquartile range 58-415). Median time from patient enrollment initiation to study publication was 7 years (range 1-15). Most studies were experimental/clinical trials (n=93, 79%) followed by observational (n=23, 20%). Therapeutic strategies were assessed in 98% (91/93) of experimental studies, most frequently chemotherapy (n=53, 58%), followed by antiangiogenics or poly-ADP ribose polymerase (PARP) inhibitors (n=8, 9%, each). Patient reported outcomes were the primary endpoint in 7.5% (7/93) and 83% (19/23) of experimental and observational studies, respectively. The ratio of real-time patient reported outcomes assessment/evaluation was 0.9% (1/117). CONCLUSIONS: Completion of patient reported outcome questionnaires involves time and effort for patients with ovarian cancer. Responses to these questionnaires were only assessed in real time in <1% of analyzed studies. Efforts should be made to incorporate proactive assessment of patient reported outcomes to optimize patient care and safety.

Organisation and management of multi-professional care for cancer patients at end-of-life: state-of-the-art from a survey to community and hospital-based professionals.

Providing timely and satisficing End-of-Life care (EOLC) is a priority for healthcare systems since aging population and chronic diseases are boosting the global demand for care at end-of-life (EOL). In OECD countries the access to EOLC is insufficient. In Italy, the average rate of cancer patients assisted by the palliative care (PC) network at EOL was 28% in 2021, with high variability in the country. Among the Italian regions offering the best coverages, Tuscany has a rate of about 40%, but intraregional variation is marked as well. The study aims to explore the delivery of EOLC to adult cancer patients in public facilities in the Tuscany region through survey data collection among professionals. Two online surveys were delivered to Directors of community-based PC Functional-Units (FUs) and Directors of hospital-based medical-oncology units. All FU Directors responded to the survey (n = 14), and a response rate of 96% was achieved from hospital-unit Directors (n = 27). The results highlight the availability of numerous dedicated services, but reveal heterogeneity among and within organisations, including variations in the professionals involved, pathways, and tools adopted. Care continuity is supported by institutionalized collaboration between hospital and community settings, but hindered by fragmented care processes and heterogeneous transition pathways. Late referral to PC is perceived as a major constraint to EOLC. Developing structured pathways for patient transition to end-stage PC is crucial, and practices/processes should be uniformly implemented to ensure equity. Multi-professional care should be facilitated through tailored supporting tools. Both hospital-unit and FU Directors suggest developing shared pathways between organisations/professionals (82% and 80% respectively) and digital information sharing (61% and 80% respectively). Hospital and community-based professionals have similar perceptions about the concerns and challenges to EOLC provision in the region, but community-based professionals are more sensitive to the importance of improving communication on PC to the public and early discussing EOLC with caregivers. This finding suggests the need of enhancing hospital personnel's awareness about these issues. Professional training and the capacity to assess patients' needs and preferences should be improved. The identified needs can inform future research and interventions to improve the quality and outcomes of EOLC for cancer patients.

Where are the values in evaluating palliative care? Learning from community-based palliative care provision.

Background: The World Health Organization Astana Declaration of 2018 sees primary healthcare as key to universal health coverage and gives further support to the goal of building sustainable models of community palliative care. Yet evaluating the benefits of such models continues to pose methodological and conceptual challenges. Objective: To explore evaluation issues associated with a community-based palliative care approach in Kerala, India. Design: An illuminative case study using a rapid evaluation methodology. Methodology: Qualitative interviews, documentary analysis and observations of home care and community organising. Results: We appraise a community palliative care programme in Kerala, India, using three linked 'canvases' of enquiry: (1) 'complex' multi-factorial community-based interventions and implications for evaluation; (2) 'axiological' orientations that foreground values in any evaluation process and (3) the status of evaluative evidence in postcolonial contexts. Three values underpinning the care process were significant: heterogeneity, voice and decentralisation. We identify 'objects of interest' related to first-, second- and third-order outcomes: (1) individuals and organisations; (2) unintended targets outside the core domain and (3) indirect, distal effects within and outside the domain. Conclusion: We show how evaluation of palliative care in complex community circumstances can be successfully accomplished when attending to the significance of community care values.

Where are the values in evaluating palliative care? Learning from community-based palliative care provision The evaluation of any intervention or service will inevitably involve a series of decisions on what we measure, what criteria we use to judge whether the intervention has been successful (or not), what type of data we actually collect and what methods we use to do this. When evaluating a range of palliative care interventions, we suggest that these decisions have often been taken in a concealed way and tend to favour relatively narrow quantitative measures linked to end outcomes. Our paper reports on the evaluation of a community-based palliative care intervention on Kerala, India. In it, we suggest that such complex work requires a broader approach to evaluation that: makes the values being used to assess success explicit; draws on a range of data types; is interested in delivery processes; and places the voices of participants at the heart of the assessment. The paper concludes with some broader observations on how these principles might be applied more widely within palliative care.

Exploring the Utility of the Modified Hospitalized-Patient One-Year Mortality Risk Score to Trigger Referrals to Palliative Care for Inpatients With Cancer.

BACKGROUND: Estimating prognosis can be a barrier to timely palliative care involvement. The modified Hospitalized-patient One-year Mortality Risk (mHOMR) score uses hospital admission data to calculate the risk of death within 12 months and may be a useful tool to trigger a referral to palliative care. METHODS: The mHOMR tool was retrospectively applied to consecutive acute admissions to a quaternary cancer center in Toronto, Canada from March 1 to May 31, 2018. The study aimed to investigate the association between dichotomized mHOMR scores (the cohort median score of 0.27 and the developer-recommended score of 0.21) and the risk of death, and whether these could be used to identify patients who may benefit from timely palliative care involvement. RESULTS: Of 269 inpatients, 87 were elective admissions and excluded from further analyses. At the median mHOMR score of 0.27, 91/182 patients (50%) were categorized as high-risk of death within 12 months (mHOMR+), 53 (58%) were referred to palliative care. At the lower cut-off of 0.21, 103 patients were mHOMR+, of whom 57 (55.3%) were referred to palliative care. The higher mHOMR was significantly associated with mortality (29.7% mHOMR- vs. 39.8% mHOMR+ at 12 months, log-rank p < 0.05). The association between the developer-recommended mHOMR cut-off (≥ 0.21) and mortality was not significant (p = 0.15). CONCLUSIONS: A higher mHOMR score was significantly associated with the risk of mortality in patients with advanced cancer. However, the developer-recommended mHOMR cut-off of 0.21 failed to identify a statistically significant difference between patients with advanced cancer at low versus high scores. While mHOMR may be a useful tool to augment clinical judgment and identify inpatients with advanced cancer at high risk of death, who in turn may benefit from referral to palliative care, the optimal mHOMR cutoff may warrant adjustment for this population.

Assessing Healthcare Integration: An Integrated Palliative Care System in Spain.

Introduction: This study explored the Osona palliative care system, recognized internationally for its good results in managing the chronic patient. The literature notices a gap of models that evaluate integration in healthcare systems. This study assesses the degree of integration of the Osona palliative care system, as well it implements a model that evaluates integration. Methods: This research used a qualitative methodology, involving a case study design with three study phases. The first phase involved reviewing primary sources, followed by conducting interviews. The final phase entailed comparing the findings with a theoretical model to analyse and validate the results. Results: The study found the integrative elements that the Osona system includes such as: multidisciplinary teams, leadership and a palliative care system that is cost-efficient. It also found aspects to improve including collaboration, continuity of care, early patient identification and lack of funding. Discussion: Our findings suggest that the Osona system has made significant progress toward integration, even though it continues the path of ongoing development in integrated care. Conclusion: This research found that the Osona palliative care system includes many integrating aspects such as multidisciplinary teams, leadership and the system's cost-efficiency. Nevertheless, some aspects need changes such as continuity of care, collaboration, enhanced early patient identification and increase funding. Furthermore, this study provides an example of how to assess integration in a system.

Introducción: Este estudio investiga el sistema de cuidados paliativos de Osona, reconocido internacionalmente por sus buenos resultados en el manejo de pacientes crónicos. La literatura señala una falta de modelos que evalúen la integración en los sistemas de salud. Este estudio evalúa el grado de integración del sistema de cuidados paliativos de Osona y, además, implementa un modelo que evalúa dicha integración. Métodos: Esta investigación utilizó una metodología cualitativa, con un diseño de estudio de caso con tres fases. La primera fase consistió en revisar fuentes primarias, seguida de la realización de entrevistas. La fase final implicó comparar los hallazgos del estudio con un modelo teórico para analizar y validar los resultados. Resultados: El estudio identificó elementos integradores que incluye el sistema de Osona, como equipos multidisciplinarios, liderazgo, y un sistema de cuidados paliativos rentable. También encontró aspectos a mejorar, incluyendo la colaboración, la continuidad de la atención, la identificación temprana de pacientes y la falta de financiación. Discusión: Nuestros resultados sugieren que el sistema de Osona ha logrado un progreso significativo hacia la integración, aunque continúa en el camino de un desarrollo continuo en la atención integrada. Conclusión: Esta investigación encontró que el sistema de cuidados paliativos de Osona incluye muchos aspectos integradores, como equipos multidisciplinarios, liderazgo y eficiencia en costos del sistema. Sin embargo, algunos aspectos requieren cambios, como la continuidad de la atención, la colaboración, la mejora en la identificación temprana de pacientes y el aumento de la financiación. Este estudio aporta un ejemplo de cómo evaluar la integración en un sistema.

Radiofrequency ablation of bilateral splanchnic nerves in a 15-year-old patient with visceral abdominal pain cancer.

Pain, a prevalent and debilitating symptom in cancer patients, significantly diminishes the quality of life for both individuals and their families. Addressing this critical issue, our study presents the case of a 15-year-old diagnosed with synchronous multifocal multicentric osteosarcoma. We utilized radiofrequency ablation of bilateral splanchnic nerves, a strategy of multimodal pain and palliative care. This approach not only proved to be safe and effective but also markedly improved the patient's quality of life. Our findings shine a light of hope, emphasizing the paramount importance of innovative pain management in pediatric oncology, especially in the final stages of life. This case report highlights the unwavering dedication to excellence in relieving suffering, offering hope for patients grappling with cancer.

Pain is a common and serious problem for cancer patients, osteosarcoma is a type of bone cancer that often affects children. making life hard for them and their families. We used a therapy called radiofrequency ablation on specific nerves to manage the pain. In the case of the patient's abdominal pain, this therapy was safe, worked well, and greatly improved the patient's quality of life. Our findings show the importance of new pain management methods in helping children with cancer, helping them reduce pain, using fewer strong pain medications and helping children in this case in the final stage of life.

The impact of a web-based prognostic calculator on prognostic confidence in outpatient palliative care.

PURPOSE: Clinicians are often uncertain about their prognostic estimates, which may impede prognostic communication and clinical decision-making. We assessed the impact of a web-based prognostic calculator on physicians' prognostic confidence. METHODS: In this prospective study, palliative care physicians estimated the prognosis of patients with advanced cancer in an outpatient clinic using the temporal, surprise, and probabilistic approaches for 6 m, 3 m, 2 m, 1 m, 2 w, 1 w, and 3 d. They then reviewed information from www.predictsurvival.com , which calculated survival estimates from seven validated prognostic scores, including the Palliative Prognostic Score, Palliative Prognostic Index, and Palliative Performance Status, and again provided their prognostic estimates after calculator use. The primary outcome was prognostic confidence in temporal CPS (0-10 numeric rating scale, 0 = not confident, 10 = most confident). RESULTS: Twenty palliative care physicians estimated prognoses for 217 patients. The mean (standard deviation) prognostic confidence significantly increased from 5.59 (1.68) before to 6.94 (1.39) after calculator use (p < 0.001). A significantly greater proportion of physicians reported feeling confident enough in their prognosis to share it with patients (44% vs. 74%, p < 0.001) and formulate care recommendations (80% vs. 94%, p < 0.001) after calculator use. Prognostic accuracy did not differ significantly before or after calculator use, ranging from 55-100%, 29-98%, and 48-100% for the temporal, surprise, and probabilistic approaches, respectively. CONCLUSION: This web-based prognostic calculator was associated with increased prognostic confidence and willingness to discuss prognosis. Further research is needed to examine how prognostic tools may augment prognostic discussions and clinical decision-making.

The purpose of an individual care plan in pediatric palliative care according to healthcare professionals: a qualitative study.

BACKGROUND: To ensure high-quality pediatric palliative care (PPC) and enable healthcare professionals (HCPs) to provide person-centered care for the individual child with a life-limiting or life-threatening illness and their family, the Individual Care Plan (ICP) for PPC was developed. However, in practice, the ICP for PPC is not used for all children in need of PPC. Insight into why, for which problem and for which children HCPs wish to use an ICP in PPC is therefore necessary to assure that the ICP can be fully implemented in practice. METHODS: Two semi-structured focus group interviews were held with 15 experienced healthcare professionals in PPC. Data were thematically analyzed. RESULTS: Participants wish to use an ICP to collaboratively establish a plan with parents for the current and future care and treatment of the child. By doing so, they hope to achieve coordination and continuity of care, to achieve shared decision-making, and to support parents and other healthcare professionals in the care of the child. Participants think the ICP could also be used in the care for children with complex chronic conditions. CONCLUSION: The purposes for which healthcare professionals wish to use an ICP in PPC are broader than the purpose for which the ICP for PPC was developed. Future research should focus on whether the use of an ICP in PPC practice can achieve these purposes.

Provider Perspectives and Access to Palliative Care: An American Head and Neck Society (AHNS) Survey.

BACKGROUND: To explore provider perspectives about palliative care (PC) in head and neck cancer (HNC) care. METHODS: A 25-question electronic survey was disseminated to the membership of the American Head and Neck Society (AHNS) from April 10, 2023, through June 13, 2023. RESULTS: Respondents were most likely to refer to PC at symptomatic disease progression (52%) or terminal diagnosis (29%) rather than at initial diagnosis (17%). Participants less likely to refer to PC were less likely to refer to symptomatic progression (8% vs. 39%, p = 0.0006) or address advance directives (62% vs. 87%, p = 0.0406). Symptom burden questionnaires were used by only 29% of respondents. Discordance was identified between self-reported and actual access to local inpatient and outpatient PC services. CONCLUSIONS: Barriers to PC identified include a lack of established optimal timing of PC referral, a perceived lack of local access to PC, and a lack of uniform standardized assessment of symptom burden.

Rasch analysis of a palliative care self-efficacy instrument for nursing assistants.

This study used Rasch models to evaluate the psychometric properties of a self-efficacy instrument focused on psychosocial aspects of palliative care developed for nursing assistants (NAs). NAs from 6 skilled nursing facilities in Illinois, U.S. (n=102) were divided into intervention and control groups and answered 16 questions at baseline and 1-month follow-up. A total of 84 NAs completed assessments at both times. The rating scale structure improved when 3 instead of 5 response categories were used. After removing 4 items, the instrument demonstrated unidimensionality and local independence. A person-item threshold map indicated a ceiling effect. For the intervention group, 2 items and 1 item became easier and more difficult respectively post-training. With adjustments, the 12-item instrument became an adequate measure of palliative care self-efficacy. By using PCSE-NA as a tool to assess palliative care self-efficacy of NAs, geriatric nurses can identify weaknesses of and ways to improve training for NAs.

Understanding non-pharmacological palliative care for people with serious COPD: the individual and organizational perspective.

TOPIC IMPORTANCE: This narrative review emphasizes the growing interest in palliative care for people with serious lung diseases, such as COPD. It reflects upon recent publications from the American Thoracic Society (ATS), the World Health Organization (WHO) and European Respiratory Society (ERS) with a focus on non-pharmacological palliative care for people with COPD, from both the healthcare professional and the organizational perspective. REVIEW FINDINGS: The concept of palliative care has changed over time and is now seen as applicable throughout the whole disease trajectory according to need, in conjunction with any disease-modifying therapies. Palliative care should pay attention to the needs of the person with COPD as well as the informal caregiver. Timely integration of palliative care with disease-modifying treatment requires assessment of needs at the individual level as well as organizational changes. High-quality communication, including advance care planning is a cornerstone of palliative care. SUMMARY: Therefore, services should be based on the understanding that palliative care is not just specific standardized actions and treatments, but a holistic approach that includes compassionate communication and treatment and care addressing the patient, informal and formal caregivers. Living with and dying from COPD is much more than objective measurements. It is the sum of relationships with others and the experience of living in the best possible harmony with one's own values and hopes despite having a serious illness.

A pragmatic approach to selecting a grading system for clinical practice recommendations in palliative care.

BACKGROUND: The limited palliative care evidence base is poorly amenable to existing grading schemes utilized in guidelines. Many recommendations are based on expert consensus or clinical practice standards, which are often considered 'low-quality' evidence. Reinforcing provider hesitancy in translating recommendations to practice has implications for patient care. AIM: To rationalize the selection of an appropriate grading system for rating evidence to support recommendations made in palliative care clinical practice guidelines. DESIGN: Review of the methodology sections of international palliative care guidelines published in English identified five grading systems comparison: Grading of Recommendations, Assessment, Development and Evaluations (GRADE); the Scottish Intercollegiate Guidelines Network (SIGN); Infectious Diseases Society of America-European Society for Medical Oncology (IDSA-ESMO); Confidence in the Evidence from Reviews of Qualitative research (CERQual) and the National Service Framework for Long Term Conditions (NSF-LTC). RESULTS: There is heterogeneity among grading systems used in published palliative care or terminal symptom management guidelines. GRADE has been increasingly adopted for its methodological rigour and inter-guideline consistency with other medical associations. CERQual has the potential to support recommendations informed by qualitative evidence, but its role in clinical guidelines is less defined. The IDSA-ESMO system has an intuitive typology with the ability to categorize tiers of lower-quality evidence. CONCLUSIONS: It is challenging to apply commonly used grading systems to the palliative care evidence base, which often lacks robust randomized controlled trials (RCTs). Adoption of IDSA-ESMO offers a feasible and practical alternative for lower-resourced guideline developers and palliative clinicians without a prerequisite for methodological expertise.

Roles of pediatric surgeons in palliative pediatric oncology.

Pediatric surgeons engaged in oncology will inevitably treat patients receiving palliative care, but their role in this context is poorly described. This article identifies some of the challenges and opportunities of surgical involvement in pediatric oncology palliative care, underscoring how the surgeon's expertise can be exploited to significantly benefit children with cancer. Specific examples of skills (procedural, communication, and coordination) that surgeons can provide to the multidisciplinary palliative care teams are described and the importance of collaboration is highlighted.

Practice recommendations for culturally sensitive communication at the end of life in intensive care: A modified eDelphi study.

BACKGROUND: Clinicians need specific knowledge and skills to effectively communicate with patients and their family when a patient is dying in the ICU. End-of-life communication is compounded by language differences and diverse cultural and religious beliefs. AIM: The aim was to develop and evaluate practice recommendations for culturally sensitive communication at the end of life. METHOD: Modified two-round eDelphi study. An Australian national sample of 58 expert ICU clinicians of nursing and medical backgrounds participated in an online survey to rate the relevance of 13 practice recommendations. Ten clinicians participated in a subsequent expert panel interview to provide face validity and comprehensive details about the practical context of the recommendations. Survey data were analysed using descriptive statistics, interview data using deductive content analysis. RESULTS: All 13 practice recommendations achieved item content validity index (I-CVI) above 0.8, and scale content validity index (S-CVI) of 0.95, indicating sufficient consensus. Recommendations prioritising use of professional interpreters and nurse involvement in family meetings achieved near perfect agreement amongst participants. Recommendations to facilitate family in undertaking cultural, spiritual and religious rituals and customs, advocate for family participation in treatment limitation discussions, and clinician access to professional development opportunities about culturally sensitive communication also achieved high level consensus. CONCLUSION: These practice recommendations provide guidance for ICU clinicians in their communication with patients and families from culturally diverse backgrounds. IMPLICATIONS FOR CLINICAL PRACTICE: Clinicians want practice recommendations that are understandable and broadly applicable across diverse ICU contexts. The high consensus scores confirm these practice recommendations are relevant and feasible to clinicians who provide end-of-life care for patients and their family members. The recommendations also provide clear guidance for ICU leaders, managers and organisational policy makers.