RESUMO
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.
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Cuidados Paliativos , Atenção Primária à Saúde , Medicina de Família e Comunidade , Estratégias de Saúde NacionaisRESUMO
BACKGROUND: Jomar et al. demonstrated that death due to COVID-19 did not affect the time under exclusive palliative care among patients with advanced cancer, even during the first year of the pandemic caused by a hitherto little-known disease. BACKGROUND: â¼ Fatality due to COVID-19 does not alter the time under oncological palliative care. BACKGROUND: â¼ The retrospective design of this pioneering study allows causal inference. BACKGROUND: â¼ Access to oncological palliative care frequently approaches terminality of life. OBJECTIVE: This study aimed at investigating the extent to which COVID-19-induced fatalities affect the duration of palliative care among patients with advanced cancer. METHODS: A retrospective cohort study was conducted at the Palliative Care Unit of the Brazilian Instituto Nacional de Câncer in Rio de Janeiro, Brazil, on 1,104 advanced cancer patients who died under exclusive palliative care between March 11, 2020, and March 31, 2021. Wilcoxon rank-sum (Mann-Whitney U) and log-rank tests were performed to examine statistical differences between the medians of time, and the Kaplan-Meier estimator was used to graphically illustrate survival over time under exclusive palliative care contingent upon the underlying causes of death of the two experimental groups (cancer versus COVID-19). RESULTS: A total of 133 (12.05%) patients succumbed to COVID-19. In both groups, the median time under exclusive palliative care was less than one month. The exclusive palliative care survival curves did not exhibit any statistically significant difference between the groups. CONCLUSION: Death due to COVID-19 did not modify the duration of exclusive palliative care among patients with advanced cancer.
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COVID-19 , Neoplasias , Cuidados Paliativos , Humanos , COVID-19/mortalidade , COVID-19/terapia , Cuidados Paliativos/estatística & dados numéricos , Neoplasias/mortalidade , Neoplasias/terapia , Estudos Retrospectivos , Masculino , Feminino , Pessoa de Meia-Idade , Brasil/epidemiologia , Idoso , Fatores de Tempo , SARS-CoV-2 , Pandemias , Idoso de 80 Anos ou mais , Adulto , Estudos de CoortesRESUMO
BACKGROUND: Dementia has a major impact on individuals, their families and caregivers, and wider society. Some individuals experience a faster decline of their function and health compared to others. The objective of this systematic review was to determine prognostic factors, measurable in primary care, for poor outcome in people living with dementia. METHODS: Cohort studies set in the community or primary care, and examining prognostic factors for care home admission, cognitive decline, or palliative care were included. Databases were searched from inception to 17th June 2022. Identified papers were screened, the risk of bias assessed using Quality in Prognostic Studies (QUIPS) tool, and data extracted by 2 reviewers, with disagreements resolved by consensus or a 3rd reviewer. A narrative synthesis was undertaken, informed by GRADE, taking into consideration strength of association, risk of bias and precision of evidence. Patient and Public Involvement and Engagement (PPIE) and stakeholder input was obtained to prioritise factors for further investigation. RESULTS: Searches identified 24,283 potentially relevant titles. After screening, 46 papers were included, 21 examined care home admission investigating 94 factors, 26 investigated cognitive decline as an outcome examining 60 factors, and 1 researched palliative care assessing 13 factors. 11 prognostic factors (older age, less deprived, living alone, white race, urban residence, worse baseline cognition, taking dementia medication, depression, psychosis, wandering, and caregiver's desire for admission) were associated with an increased risk of care home admission and 4 prognostic factors (longer duration of dementia, agitation/aggression, psychosis, and hypercholesterolaemia) were associated with an increased risk of cognitive decline. PPIE and other stakeholders recommended further investigation of 22 additional potential prognostic factors. CONCLUSIONS: Identifying evidence for prognostic factors in dementia is challenging. Whilst several factors highlighted as of relevance by our stakeholder groups need further investigation, inequalities may exist in care home admission and there is evidence that several prognostic factors measurable in primary care could alert clinicians to risk of a faster progression. REGISTRATION: PROSPERO CRD42019111775.
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Demência , Atenção Primária à Saúde , Humanos , Demência/terapia , Demência/diagnóstico , Demência/psicologia , Demência/epidemiologia , Prognóstico , Cuidados Paliativos/métodos , Idoso , Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/epidemiologia , Disfunção Cognitiva/psicologia , Disfunção Cognitiva/terapiaRESUMO
BACKGROUND: The 3-variable number-of-risk-factors (NRF) model is a prognostic tool for patients undergoing palliative radiotherapy (PRT). However, there is little research on the NRF model for patients with painful non-bone-metastasis tumours treated with PRT, and the efficacy of the NRF model in predicting survival is unclear to date. Therefore, we aimed to assess the prognostic accuracy of a 3-variable NRF model in patients undergoing PRT for bone and non- bone-metastasis tumours. METHODS: This was a secondary analysis of studies on PRT for bone-metastasis (BM) and PRT for miscellaneous painful tumours (MPTs), including non-BM tumours. Patients were grouped in the NRF model and survival was compared between groups. Discrimination was evaluated using a time-independent C-index and a time-dependent area under the receiver operating characteristic curve (AUROC). A calibration curve was used to assess the agreement between predicted and observed survival. RESULTS: We analysed 485 patients in the BM group and 302 patients in the MPT group. The median survival times in the BM group for groups I, II, and III were 35.1, 10.1, and 3.3 months, respectively (P < 0.001), while in the MPT group, they were 22.1, 9.5, and 4.6 months, respectively (P < 0.001). The C-index was 0.689 in the BM group and 0.625 in the MPT group. In the BM group, time-dependent AUROCs over 2 to 24 months ranged from 0.738 to 0.765, while in the MPT group, they ranged from 0.650 to 0.689, with both groups showing consistent accuracy over time. The calibration curve showed a reasonable agreement between the predicted and observed survival. CONCLUSIONS: The NRF model predicted survival moderately well in both the BM and MPT groups.
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Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Feminino , Masculino , Pessoa de Meia-Idade , Prognóstico , Idoso , Fatores de Risco , Dor do Câncer/radioterapia , Dor do Câncer/etiologia , Dor do Câncer/mortalidade , Neoplasias/radioterapia , Neoplasias/mortalidade , Neoplasias Ósseas/radioterapia , Neoplasias Ósseas/mortalidade , Neoplasias Ósseas/secundário , Taxa de Sobrevida , Adulto , Idoso de 80 Anos ou maisRESUMO
BACKGROUND: Caring for patients with anorexia nervosa (AN) is associated with high levels of moral distress among healthcare professionals. The main moral conflict has been posited to be between applying coercion to prevent serious complications such as premature death and accepting treatment refusals. However, empirical evidence on this topic is scarce. METHODS: We identified all 19 documentations of ethics consultations (ECs) in the context of AN from one clinical ethics support service in Switzerland. These documentations were coded with a sequential deductive-inductive approach and the code system was interpreted in a case-based manner. Here, we present findings on patient characteristics and ethical concerns. FINDINGS: The ECs typically concerned an intensely pretreated, extremely underweight AN patient endangering herself by refusing the proposed treatment. In addition to the justifiability of coercion, frequent ethical concerns were whether further coerced treatment aimed at weight gain would be ineffective or even harmful, evidencing uncertainty about beneficence and non-maleficence and a conflict between these principles. Discussed options included harm reduction (e.g. psychotherapy without weight gain requirements) and palliation (e.g. initiating end-of-life care), the appropriateness of which were ethical concerns in themselves. Overall, nine different types of conflicts between or uncertainties regarding ethical principles were identified with a median of eight per case. CONCLUSIONS: Ethical concerns in caring for persons with AN are diverse and complex. To deal with uncertainty about and conflict between respect for autonomy, beneficence and non-maleficence, healthcare professionals consider non-curative approaches. However, currently, uncertainty around general justifiability, eligibility criteria, and concrete protocols hinders their adoption.
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Anorexia Nervosa , Beneficência , Coerção , Consultoria Ética , Humanos , Anorexia Nervosa/terapia , Anorexia Nervosa/psicologia , Suíça , Feminino , Adulto , Recusa do Paciente ao Tratamento/ética , Masculino , Princípios Morais , Cuidados Paliativos/ética , Conflito Psicológico , Incerteza , Pessoal de Saúde/ética , Pessoal de Saúde/psicologiaRESUMO
BACKGROUND: Active euthanasia is a controversial subject both globally and in South Africa. Recent legal cases have kept this topic in the public discourse. Yet, there remains a dearth of quality local research on this issue. This study aimed to explore the views of medical professionals towards active euthanasia to gain a better understanding of this phenomenon in South Africa. METHODS: A descriptive-interpretive qualitative research design, using semi-structured in-depth interviews of purposively sampled South African medical professionals, was used to collect the data. The data were analysed using an inductive thematic analysis framework, which included familiarisation, coding, summarising, theme development and thematic review, revision and interpretation. RESULTS: Four general themes, with sub-themes, were identified and inductively analysed: modern medical practice and euthanasia; the problem of suffering in end-of-life care; euthanasia is complex; palliative care in South Africa is poor. Some themes and sub-themes were common to all participants while other themes underscored more diverse views - often because of religious factors. CONCLUSION: Active euthanasia is a complex and nuanced issue. An understanding of the perceptions and attitudes of medical professionals will contribute to the overall discussion of this phenomenon in ethical, legal, social and political spheres in South Africa. This is of utmost importance given the relevance of this topic in South Africa in the 21st century.Contribution: This study highlights the complex nature of active euthanasia in South Africa among medical professionals while providing a greater understanding of its nuances and the strengths and weaknesses of arguments for or against it.
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Atitude do Pessoal de Saúde , Eutanásia Ativa , Pesquisa Qualitativa , Humanos , África do Sul , Feminino , Masculino , Adulto , Eutanásia Ativa/legislação & jurisprudência , Entrevistas como Assunto , Pessoa de Meia-Idade , Cuidados Paliativos/psicologia , Pessoal de Saúde/psicologia , Assistência Terminal/psicologiaRESUMO
OBJECTIVE: The study aimed to determine the nutritional status and its prognostic effect on the survival of patients with advanced gastrointestinal cancer. METHODS: A prospective cohort study design was conducted in a tertiary hospital in Shanghai, China. The study consisted of 202 advanced gastrointestinal (GI) cancer patients from a palliative care unit. The following data were collected from the patients: biochemical indicators, i.e., anemia (hemoglobin levels), albumin, pre-albumin, C-reactive protein (CRP), and anthropometric parameters, i.e., body mass index (BMI), nutritional status by Patient-Generated Subjective Global Assessment (PG-SGA), and performance status by Karnofsky Performance Status (KPS). Severe malnutrition was confirmed with the PG-SGA score of ≥ 9. Kaplan-Meier survival analysis and the log-rank test were used to calculate overall survival (OS). The effect of nutritional status on survival was performed by Cox regression analysis. RESULTS: Severe malnutrition was found in 71.3% of patients according to the cutoff of the PG-SGA. PG-SGA score ≥ 9, albumin level < 35 g/L, and CRP level ≥ 10 mg/L predicted shortened life expectancy. Multivariate Cox regression analysis results showed that the PG-SGA score ≥ 9 and the albumin level < 35 g/L were predictive of OS. CONCLUSION: Our data support that severe malnutrition is a predictor for OS in patients with advanced GI cancer. Information on nutritional status should be considered to individualize palliative care plan for these patients, and hence improve their quality of life.
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Neoplasias Gastrointestinais , Desnutrição , Estado Nutricional , Cuidados Paliativos , Humanos , Neoplasias Gastrointestinais/complicações , Masculino , Feminino , Estudos Prospectivos , Cuidados Paliativos/métodos , Pessoa de Meia-Idade , Prognóstico , Idoso , Desnutrição/etiologia , Desnutrição/epidemiologia , China/epidemiologia , Modelos de Riscos Proporcionais , Estimativa de Kaplan-Meier , Estudos de Coortes , Avaliação de Estado de Karnofsky , Adulto , Idoso de 80 Anos ou mais , Proteína C-Reativa/análiseRESUMO
BACKGROUND: Although older adults with heart failure (HF) and multiple chronic conditions (MCC) frequently rely on caregivers for health management, digital health systems, such as patient portals and mobile apps, are designed for individual patients and often exclude caregivers. There is a need to develop approaches that integrate caregivers into care. This study tested the feasibility of the Social Convoy Palliative Care intervention (Convoy-Pal), a 12-week digital self-management program that includes assessment tools and resources for clinical palliative care, designed for both patients and their caregivers. METHODS: A randomized waitlist control feasibility trial involving patients over 65 years old with MCC who had been hospitalized two or more times for HF in the past 12 months and their caregivers. Descriptive statistics were used to evaluate recruitment, retention, missing data, self-reported social functioning, positive aspects of caregiving, and the acceptability of the intervention. RESULTS: Of 126 potentially eligible patients, 11 were ineligible and 69 were deceased. Of the 46 eligible patients, 31 enrolled in the trial. Although 48 caregivers were identified, only 15 enrolled. The average age was 76.3 years for patients and 71.6 years for caregivers, with most participants being non-Hispanic White. Notably, 4% did not have access to a personal mobile device or computer. Retention rates were 79% for intervention patients, 57% for intervention caregivers, and 60% for control participants. Only 4.6% of survey subscales were missing, aided by robust technical support. Intervention patients reported improved social functioning (SF-36: 64.6 ± 25.8 to 73.2 ± 31.3) compared to controls (64.6 ± 27.1 to 67.5 ± 24.4). Intervention caregivers also reported increased positive perceptions of caregiving (29.5 ± 5.28 to 35.0 ± 5.35) versus control caregivers (29.4 ± 8.7 to 28.0 ± 4.4). Waitlist control participants who later joined the Convoy-Pal program showed similar improvements. The intervention was well-rated for acceptability, especially regarding the information provided (3.96 ± .57 out of 5). CONCLUSIONS: Recruiting informal caregivers proved challenging. Nonetheless, Convoy-Pal retained patients and collected meaningful self-reported outcomes, showing potential benefits for both patients and caregivers. Given the importance of a patient and caregiver approach in palliative care, further research is needed to design digital tools that cater to multiple simultaneous users. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT04779931. Date of registration: March 3, 2021.
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Cuidadores , Estudos de Viabilidade , Insuficiência Cardíaca , Cuidados Paliativos , Humanos , Insuficiência Cardíaca/terapia , Insuficiência Cardíaca/psicologia , Idoso , Feminino , Masculino , Cuidadores/psicologia , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Idoso de 80 Anos ou mais , Listas de Espera , Múltiplas Afecções Crônicas/terapia , Múltiplas Afecções Crônicas/psicologiaAssuntos
Cuidados Paliativos , Humanos , Idoso , Idoso de 80 Anos ou mais , Feminino , Geriatria , Masculino , Avaliação GeriátricaAssuntos
Cuidados Paliativos , Humanos , Idoso , Idoso de 80 Anos ou mais , Avaliação Geriátrica , Feminino , MasculinoRESUMO
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.
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Grupos Focais , Cuidados Paliativos , Pesquisa Qualitativa , Humanos , Cuidados Paliativos/normas , Cuidados Paliativos/métodos , Portugal , Grupos Focais/métodos , Política de Saúde/tendências , Masculino , Feminino , Adulto , Pessoa de Meia-IdadeRESUMO
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.
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Cuidados Paliativos , Irã (Geográfico) , Humanos , Pesquisa Qualitativa , Atenção à Saúde , Previsões , IncertezaRESUMO
PURPOSE: Despite the increasing research on cancer patient caregivers, there is still a lack of detailed understanding about the experiences of spouses caring for elderly colorectal cancer patients. This study aimed to fill this gap by examining the caregiving experiences of spouses during palliative chemotherapy for elderly Chinese colorectal cancer patients. METHODS: Using a qualitative descriptive design, we recruited spousal caregivers of elderly colorectal cancer patients undergoing palliative chemotherapy. Semistructured interviews were conducted, and thematic analysis was employed to analyse the data. RESULTS: Sixteen caregivers aged 60 to 82 years participated in the interviews. The analysis revealed three main themes: ambivalence, multiple role adaptation to conflicts, and the coexistence of hope and pressure. These themes shed light on the behaviors of older caregivers and the challenges they face, including physical and psychosocial issues associated with aging. CONCLUSION: This study highlights the significant stress and challenges experienced by older caregivers, characterized by intertwined emotions such as anxiety about their spouses' health deterioration, exhaustion from long-term care responsibilities, and anticipation of treatment outcomes.
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Cuidadores , Neoplasias Colorretais , Cuidados Paliativos , Pesquisa Qualitativa , Humanos , Idoso , Cuidadores/psicologia , Neoplasias Colorretais/tratamento farmacológico , Neoplasias Colorretais/psicologia , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Incerteza , Cônjuges/psicologia , Adaptação Psicológica , Estresse Psicológico/etiologia , Estresse Psicológico/psicologia , Entrevistas como Assunto , ChinaRESUMO
The issue of withrawing and withholding life-sustaining interventions is an important source of controversy among healthcare professionals caring for patients with serious illnesses. Misguided decisions, both in terms of the introduction/maintenance and the withdrawal/withholding of these measures, represent a source of avoidable suffering for patients, their loved ones, and healthcare professionals. This document represents the position statement of the Bioethics Committee of the Brazilian Palliative Care Academy on this issue and establishes seven principles to guide, from a bioethical perspective, the approach to situations related to this topic in the context of palliative care in Brazil. The position statement establishes the equivalence between the withdrawal and withholding of life-sustaining interventions and the inadequacy related to initiating or maintaining such measures in contexts where they are in disagreement with the values and care goals defined together with patients and their families. Additionally, the position statement distinguishes strictly futile treatments from potentially inappropriate treatments and elucidates their critical implications for the appropriateness of the medical decision-making process in this context. Finally, we address the issue of conscientious objection and its limits, determine that the ethical commitment to the relief of suffering should not be influenced by the decision to employ or not employ life-sustaining interventions and warn against the use of language that causes patients/families to believe that only one of the available options related to the use or nonuse of these interventions will enable the relief of suffering.
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Cuidados Paliativos , Suspensão de Tratamento , Humanos , Cuidados Paliativos/ética , Cuidados Paliativos/métodos , Suspensão de Tratamento/ética , Brasil , Cuidados para Prolongar a Vida/ética , Futilidade Médica/éticaRESUMO
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.
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Competência Clínica , Cuidados Paliativos , Humanos , Competência Clínica/normas , Estados Unidos , Treinamento por Simulação , Educação em EnfermagemRESUMO
INTRODUCTION: Malignant wounds are lesions caused by metastasis from distant primary cancers or by direct invasion of the cutaneous structures of a primary cancer, and are most common in patients with breast or head and neck cancers. Malignant wounds not only cause physical symptoms, but also affect survival. Recognizing prognosis in terminal-stage cancer patients is necessary for both patients and health care providers. The prognostic impact of malignant wounds in patients with head and neck cancer has been poorly investigated. METHODS: This is a secondary analysis of the results of a prospective cohort study that investigated the dying process in patients with advanced cancer in 23 palliative care units in Japan. The primary outcome of this study was the prognostic impact of malignant wounds in patients with head and neck cancer. The difference in survival between patients with head and neck cancer who had malignant wounds and those who did not was compared using the log-rank test. RESULTS: Of 1896 patients admitted to palliative care units, 68 had head and neck cancer, and 29 of these had malignant wounds. Overall survival was significantly shorter in patients with malignant wounds than that in those without (median: 19.0 days vs 32.0 days, P = 0.046). CONCLUSION: Patients with head and neck cancer who had malignant wounds had worse overall survival than those who did not.
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Neoplasias de Cabeça e Pescoço , Cuidados Paliativos , Humanos , Neoplasias de Cabeça e Pescoço/patologia , Neoplasias de Cabeça e Pescoço/complicações , Neoplasias de Cabeça e Pescoço/mortalidade , Prognóstico , Estudos Prospectivos , Feminino , Masculino , Idoso , Pessoa de Meia-Idade , Japão/epidemiologia , Idoso de 80 Anos ou mais , AdultoRESUMO
BACKGROUND: Deprescribing has been defined as the planned process of reducing or stopping medications that may no longer be beneficial or are causing harm, with the goal of reducing medication burden while improving patient quality of life. At present, little is known about the specific challenges of decision-making to support deprescribing for patients who are accessing palliative care. By exploring the perspectives of healthcare professionals, this qualitative study aimed to address this gap, and explore the challenges of, and potential solutions to, making decisions about deprescribing in a palliative care context. METHODS: Semi-structured interviews were conducted with healthcare professionals in-person or via video call, between August 2022 - January 2023. Perspectives on approaches to deprescribing in palliative care; when and how they might deprescribe; and the role of carers and family members within this process were discussed. Interviews were audio-recorded and transcribed verbatim. Reflexive thematic analysis enabled the development of themes. QSR NVivo (Version 12) facilitated data management. Ethical approval was obtained from the NHS Health Research Authority (ref 305394). RESULTS: Twenty healthcare professionals were interviewed, including: medical consultants, nurses, specialist pharmacists, and general practitioners (GPs). Participants described the importance of deprescribing decision-making, and that it should be a considered, proactive, and planned process. Three themes were developed from the data, which centred on: (1) professional attitudes, competency and responsibility towards deprescribing; (2) changing the culture of deprescribing; and (3) involving the patient and family/caregivers in deprescribing decision-making. CONCLUSIONS: This study sought to explore the perspectives of healthcare professionals with responsibility for making deprescribing decisions with people accessing palliative care services. A range of healthcare professionals identified the importance of supporting decision-making in deprescribing, so it becomes a proactive process within a patient's care journey, rather than a reactive consequence. Future work should explore how healthcare professionals, patients and their family can be supported in the shared decision-making processes of deprescribing. TRIAL REGISTRATION: Ethical approval was obtained from the NHS Health Research Authority (ref 305394).
Assuntos
Tomada de Decisões , Desprescrições , Pessoal de Saúde , Cuidados Paliativos , Pesquisa Qualitativa , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Pessoal de Saúde/psicologia , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Entrevistas como Assunto/métodos , Atitude do Pessoal de SaúdeRESUMO
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.