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.

The "New-Old" Dimensions of Caring in Humanitarian Response: The Opportunity for Public Health Palliative Care to Advance the Humanitarian-Development Nexus, Decoloniality, and Localization Thought.

How can palliative care framings advance humanitarian discourse? The imperative for palliative care in humanitarian settings is increasingly urgent. Recent efforts by health and humanitarian organizations demonstrate increasing attention to the issue. Yet palliative care is still not adequately formally considered or enacted by humanitarian agencies in rhetoric, policy, research, or practice. Even where it is considered in humanitarian action, palliative care is often assumed to be a novel intervention, rather than a caring practice that has existed from time immemorial, including in humanitarian situations. The generation of ideas in this paper has followed a dynamic, iterative, and reflexive process through engagement with key literature, critical thinking, conversations with colleagues across both sectors, primary data, and debate amongst the authors. The paper argues that the current dominant frame of a new, specialized, professionalized, and medicalized palliative care in the humanitarian sector would perpetuate existing challenges. It contends that viewing both fields through a "new-old" lens, where historical and traditional caring practices intertwine with progressive discourse for a more just and appropriate public health response, can further humanitarianism. It posits that the humanitarian-development nexus, decoloniality, and localization thought can benefit from palliative care practice through critical interaction with a broad range of literature.

A case of basal cell carcinoma of skin with bone metastasis: a case report.

BACKGROUND: Basal cell carcinoma is the most prevalent skin cancer, most characterized by local aggressiveness but with low metastatic potential, and bone metastasis is quite heterogeneous, thus the incidence profile is variable size from 0.0028% to 0.5%. We have this patient with an unusual example of basal cell carcinoma with bone metastases to add to the scarce report on this matter. CASE DESCRIPTION: Here we document a 48-year-old Persian man with a background of being exposed to the sun for a long time. He was diagnosed with an ulcer on the cheek, which was clinically characterized and further confirmed by biopsy as morpheaform basal cell carcinoma. Following the first round of excision, multiple relapses eventually metastasized to the bone. The latter was found on follow-up radiologic scans. This case is characterized by the aggressive nature of the disease and the heterogeneity of basal cell carcinoma growth, thus challenging the conventional view of basal cell carcinoma behavior. Treatment included surgical excision of the primary lesion, which was treated with radiotherapy afterward. However, the skeleton improved slowly during follow-up, and palliative care was eventually pursued to control symptoms and improve quality of life. CONCLUSIONS: This was a rare case of basal cell carcinoma metastasis to non-bone organs, which reminded us to consider basal cell carcinoma metastasis, especially in the case of atypical basal cell carcinoma. Therefore, risk-aware patient management is essential. Moreover, these findings highlight the role of further research into the mechanisms of basal cell carcinoma metastasis, leading to improved therapeutic strategies that may lead to potential improvements in patient outcomes.

"You close the door, wipe your sadness and put on a smiling face": a qualitative study of the emotional labour of healthcare professionals providing palliative care in nursing homes in France.

BACKGROUND: Palliative care provided to frail and dying older persons in nursing homes results in intense emotions for residents and their relatives as well as for healthcare professionals. In France, scant attention has been given to how nursing home professionals manage their emotions when providing palliative care. This study analysed the emotional demands of providing palliative care in the nursing home context, the emotional strategies used by healthcare professionals to navigate such demands, and how these demands affect their emotional wellbeing. METHODS: This qualitative study used a multiple case study approach. We purposively selected nine nursing homes from three geographical provinces in France with diverse ownership statuses (public, private, associative). Individual interviews and focus group discussions were held with 93 healthcare professionals from various occupational groups employed in the participating nursing homes. Data was collected from April 2021 to September 2022 and was analysed using thematic content analysis. RESULTS: Data revealed that providing palliative care to dying residents within the nursing home context results in intertwined rewarding and exhausting emotional experiences for healthcare professionals. Professionals have to utilize multifaceted emotional strategies to navigate these experiences, including suppressing and modifying emotions and distancing themselves emotionally from residents to protect themselves from emotional suffering. Participants noted a lack of formal space to express emotions. Unrecognized emotional labour undermines the wellbeing of healthcare professionals in nursing homes, whereas acknowledging emotions enhances satisfaction and gives enhanced meaning to their crucial role in resident care. CONCLUSION: Acknowledging emotional labour as an inevitable component of providing palliative care in nursing homes is critical to supporting healthcare professional wellbeing, resilience, and retention, which may ultimately improve the quality of care for dying residents. Ensuring quality care and supporting the emotional wellbeing of nursing home professionals requires an organisational culture that considers emotional expression a collective strength-building resource rather than an individual responsibility, in hopes of shaping a new culture that fully acknowledges their humanity alongside their professional skills. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT04708002; National registration: ID-RCB number: 2020-A01832-37, Registration date: 2020-12-03.

[Early integration of palliative care; implications for people with chronic diseases]. / Integración temprana de cuidados paliativos; implicancias para personas con enfermedades crónicas.

INTRODUCTION: Globally, there is a growing number of population with noncommunicable and aging diseases that are eligible for palliative care. OBJECTIVE: To analyze when palliative care should be integrated in people with non-oncological chronic diseases and the implications of its implementation. METHODOLOGY: Review of scientific literature in the Web of Science, PubMed and CINAHL databases, using the descriptors palliative care, chronic diseases, and benefits. RESULTS: 28 scientific articles were selected, identifying four categories: palliative care for all; early integration of palliative care; strategies for implementation; benefits of palliative care integration. CONCLUSIONS: Palliative care is a strategy of care for all people with complex chronic pathologies, which should be integrated early, in an active, multidimensional and safe way, under the wing of a trained and coordinated health team at different levels of care.

Global disparities in cancer supportive care: An international survey.

BACKGROUND: The global cancer burden is rising, particularly in low- and middle-income countries (LMIC), highlighting a critical research gap in understanding disparities in supportive care access. To address this, the Multinational Association of Supportive Care in Cancer (MASCC) Health Disparities Committee initiated a global survey to investigate and delineate these disparities. This study aims to explore and compare supportive care access disparities between LMIC and High-Income Countries (HIC). METHODS: An online cross-sectional survey was conducted among active members of MASCC. Members, representing diverse healthcare professions received email invitations. The survey, available for 3 weeks, comprised sections covering (1) sociodemographic information; (2) clinical service/practice-related disparities in their region/nation; (3) population groups facing disparities within their region or country. Chi-squared or Fisher's exact test for cross-sectional analyses, and a multivariable logistic regression model was employed for statistical analysis. RESULTS: A total of 218 active members participated, with one-quarter (26.6%) from LMIC and 18.4% ethnic minorities, timely cancer care (43.7%) and timely supportive care (45.0%) emerged as the most pressing disparities globally. Notably, participants from LMIC underscored cancer drug affordability (56.4%) and supportive care guideline implementation (56.4%) as critical issues. Economically disadvantaged populations were noted as more likely to face disparities by both LMIC and HIC (non-US-based) respondents, while US-based respondents identified racial/ethnic minorities as facing more disparities. CONCLUSION: This global survey reveals significant disparities in cancer supportive care between LMIC and HIC, with a particular emphasis on medication affordability and guideline implementation in LMIC. Addressing these disparities requires targeted intervention, considering specific regional priorities.

Avoidable emergency admissions: defining the concept.

BACKGROUND: The transfer of end-of-life patients to hospital via admission to an emergency service mainly happens because of a lack of community support nearby and a lack of resources in palliative care. AIMS: This study aimed to define the concept of avoidable admission to an emergency department for palliative patients. METHODS: An integrative literature review was performed. The results of this were put to a panel of palliative care experts via a Delphi process to determine their consensus and agreement with the statements. FINDINGS: The results of the two-step Delphi process reached a high level of consensus and agreement that patients with palliative needs accompanied by home palliative care teams should not go to the emergency department. There was a low level of consensus and agreement about the appropriate admission of a patient in pain in the absence of any information about previous community support. CONCLUSION: The findings allowed the definition of an 'avoidable emergency admission', which is an emergency admission for any symptom or condition that could be supported in a home context or primary health care, or any emergency admission that does not require immediate nursing or medical intervention, nor leads to greater comfort or quality of life for the patient.

ABCDE assessment for palliative care truth-telling dilemmas: a case study.

BACKGROUND: In Indonesia, the diagnosis of a serious illness is often mediated through the patient's family, reflecting the cultural importance of family involvement in the patient's care and collective decision-making. AIM: To use a case study to show the difficulty that healthcare professionals face telling the patient the truth about their condition in Indonesia. METHOD: The Kagawa-Singer and Blackhall ABCDE framework was used during truth-telling dilemmas to assess patients' and families' attitudes (A), beliefs (B), contexts (C), decision-making styles (D) and environments (E). FINDINGS: Studies have shown that family involvement in health-related communications can alleviate the stress associated with the disclosure of a serious illness. Palliative care nurses must acknowledge the importance of family in the patient's cultural context, by involving them in the disclosure of a diagnosis and disease trajectory by integrating every element of the ABCDE model in palliative care.

Experience of caregivers and healthcare professionals using a telemedicine programme in a paediatric palliative care unit.

BACKGROUND: Telemedicine is a means of providing efficient treatment for children with complex chronic conditions and/or subsidiary palliative paediatric care. AIM: To evaluate how satisfied families and healthcare professionals are with a telemedicine programme. METHODOLOGY: This is a qualitative study of narrative design. Ten interviews were conducted with family members and professionals who had been using telemedicine for a year. Sampling was intentional and a discourse and content analysis was conducted. RESULTS: Six thematic categories emerged from the analysis of the interviews: degree of satisfaction; usefulness; benefits according to patient needs and attention; technical and human difficulties; and implantation of the system and proposals for improvement. CONCLUSIONS: The study shows that telemedicine is a very useful complementary tool for healthcare professionals in a palliative care context. It is necessary to take into account the perception and needs of both families and healthcare professionals with regard to this tool since it can improve patient care.

Harnessing Natural Language Processing to Assess Quality of End-of-Life Care for Children With Cancer.

PURPOSE: Data on end-of-life care (EOLC) quality, assessed through evidence-based quality measures (QMs), are difficult to obtain. Natural language processing (NLP) enables efficient quality measurement and is not yet used for children with serious illness. We sought to validate a pediatric-specific EOLC-QM keyword library and evaluate EOLC-QM attainment among childhood cancer decedents. METHODS: In a single-center cohort of children with cancer who died between 2014 and 2022, we piloted a rule-based NLP approach to examine the content of clinical notes in the last 6 months of life. We identified documented discussions of five EOLC-QMs: goals of care, limitations to life-sustaining treatments (LLST), hospice, palliative care consultation, and preferred location of death. We assessed performance of NLP methods, compared with gold standard manual chart review. We then used NLP to characterize proportions of decedents with documented EOLC-QM discussions and timing of first documentation relative to death. RESULTS: Among 101 decedents, nearly half were minorities (Hispanic/Latinx [24%], non-Hispanic Black/African American [20%]), female (48%), or diagnosed with solid tumors (43%). Through iterative refinement, our keyword library achieved robust performance statistics (for all EOLC-QMs, F1 score = 1.0). Most decedents had documented discussions regarding goals of care (83%), LLST (83%), and hospice (74%). Fewer decedents had documented discussions regarding palliative care consultation (49%) or preferred location of death (36%). For all five EOLC-QMs, first documentation occurred, on average, >30 days before death. CONCLUSION: A high proportion of decedents attained specified EOLC-QMs more than 30 days before death. Our findings indicate that NLP is a feasible approach to measuring quality of care for children with cancer at the end of life and is ripe for multi-center research and quality improvement.

Palliative care competence development through simulation: Excellence & innovation to meet the AACN essentials.

BACKGROUND: The updated American Association of Colleges of Nursing: The Essentials: Core Competencies for Professional Nursing Education (2021) outlines competence requirements for entry-to-practice nurses. Hospice and palliative care (PC) are identified as one of four spheres of care, emphasizing that nursing knowledge and proficiency in primary PC are critical for all nurses. PURPOSE: This article identifies key elements for nursing educators to consider when adopting, adapting, or designing practical primary PC simulations to meet The AACN Essentials. METHODS: Using Healthcare Simulation Standards of Best Practice™ (HSSBP) as a framework, a panel of nursing education researchers identified and compared key elements of four PC simulations from varied evidence-based exemplars across the U.S. RESULTS: Overarching elements in simulation development include choosing modalities, assessing resources, and simulation logistics, creating opportunities for difficult conversations with interprofessional team engagement, and validating scenarios with expert input. Simulation implementation should include tailored pre-briefing to address psychological safety in caring for the dying patient, piloting scenarios, and maximizing observer/vicarious learner roles. Finally, evaluation is vital for competency assessment, scenario enhancement, and logistical changes. Limitations included variability in PC simulation scenarios, learners/learner level, curricula, and geography across selected exemplars, which may affect the general applicability of these findings. CONCLUSIONS: Simulations developed according to HSSBP™ provide effective practical experience in PC, affording active and vicarious learners the knowledge and skills essential for baseline nursing competence.

[Palliative care in practice]. / Palliatieve zorg in de praktijk.

In palliative care patient problems often are complex and have elements that relate to more than one dimension and therefore require a multidisciplinary approach.In this article the methodical approach of "palliative reasoning" is described, which helps to analyse, treat and follow up complex patient problems in the palliative phase. Furthermore, tips, general recommendations and treatment options are described based on existing Dutch clinical practice palliative care guidelines, literature and expert opinion.

Analyzing innovative policies and practices for palliative care in Portugal: a qualitative study.

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

Future scenarios of palliative care in health system of Iran: a multi-method study.

Background: Paying attention to palliative care has accelerated in Iran in the last 10 years. Considering the trend of aging, increasing burden of chronic diseases and increasing health costs, planning and development of palliative care is necessary in the future. This study was conducted with the aim of explaining the alternative scenarios of palliative care in the health system of Iran until the horizon of 2030. Methods: This study was a multi-method scenario planning with a qualitative using multiple methods design, which was conducted in 3 phases in 2018-2020. In the first phase, a list of driving forces was extracted using qualitative interviews and literature review. In the second phase, all factors identified in the previous phase were examined in terms of degree of uncertainty and cross-impact analysis, and two key uncertainties were extracted. In the third phase, based on two key uncertainties, four future scenarios of palliative care were formulated, validated and scenario strategies were presented. Results: The results indicate two uncertainties, including "governance of palliative care in the health system" and "acceptance of palliative care by society," based on which, four scenarios with the names "climbing to the top," "excruciating climb," "edge of the abyss" and "The bottom of the valley" were compiled. Conclusion: The development of palliative care in health system of Iran is faced with serious uncertainties that it is necessary to focus the developmental activities of palliative care on the two axes of acceptance by society and need for coherent governance by considering all the dimensions and influential components by ministry of health. The application of the results of this research can provide reasonable options for effective interventions and implementation of this category of services to the beneficiaries of palliative care.

The Intimate Palliative Sphere: Affect, Gender, and the Good Death in Relational End-of-Life Narratives.

An increasing number of collaborative end-of-life narratives have been published after the death of the protagonist. Focusing on two examples of women's end-of-life memoirs in contemporary German popular culture, this essay examines how relationality, gender, and affectivity shape the philosophies, practices, and politics of palliative care and the associated concepts of the "good death." Ultimately, I argue that the memoirs foreground a still-marginal narrative and practice of dying at home within an intimate public sphere of palliation that transgresses traditional approaches to care for the dying in contemporary health care. They also contribute to gendered and sentimental notions of family care and of the self-determined and autonomous body and death.

Holes in the Protective Cloak of Palliative Care: Mathieu Simonet's La maternité and Eduardo Berti's An Ideal Presence.

In the novels An Ideal Presence (2020) by Eduardo Berti and La maternité [Maternity] (2012) by Mathieu Simonet, relatives of the dying and palliative care professionals are given a voice. Their experiences highlight "holes" in the cloak of care, which can never protect the terminally ill completely. However, they also raise the question of a pallium for the carers themselves. This need of protection, expressed in both novels by a concern to find the right dosage between caring presence for the terminally ill and self-caring distance from their suffering, risks clashing with the low-tech, high-touch approach associated with the hospice movement. By exposing the limits of palliative care, these (auto-)fictional accounts may prevent inflated expectations in this important medical field.