Factores que intervienen en la práctica de los cuidados paliativos por enfermeras intensivistas / Factors involved in the practice of palliative care by intensivist nurses

Objetivo principal: Conocer los factores que intervienen en la práctica de los cuidados paliativos prestados por el personal de enfermería en las Unidades de Cuidados Intensivos (UCI). Metodología: Investigación cualitativa. Entrevistas realizadas entre noviembre y mayo de 2019 con 14 profesionales de enfermería de hospital privado de Salvador, Bahía, Brasil. Los datos se sistematizaron mediante análisis de contenido con enfoque de la Teoría del Final de la Vida del Pacífico. Resultados principales: Se identificaron como factores: Equipo Multiprofesional, Apoyo Familiar, Humanización del Cuidado en la UCI, Modelo Curativista, Definición de los criterios de cuidados paliativos. Conclusión principal: La atención a los pacientes en paliación es perjudicada por la falta de preparación emocional y de habilidades, que dificulta la inclusión familiar. Se valora el equipo multiprofesional y la inserción de paradigmas teóricos en el proceso de la enfermedad.(AU)

Objective: To know the factors involved in the practice of palliative care provided by nurses in Intensive Care Units (ICU). Methods: Qualitative research. Interviews conducted between November and May 2019 with fourteen nursing professionals from a private hospital in Salvador, Bahia, Brazil. The data were systematized through Content Analysis and analyzed by the Pacific End-of-Life Theory.Results: The factors: Multiprofessional team; Family support, Humanization of care in the ICU; Curativist model; Definition of PC criteria.Conclusions: The care of patients in palliation is impaired by the lack of emotional preparation and skills, which hinders family inclusion. The multiprofessional team and the insertion of theoretical paradigms in the disease process are valued.(AU)

Inicio de un nuevo programa de cuidados paliativos pediátricos en un hospital general: características de la población y uso de recursos / Starting of a new pediatric palliative care program in a general hospital: characteristics of the population and use of resources

Se describen las características de los pacientes susceptibles de cuidados paliativos pediátricos (CPP) de un hospital de segundo nivel, así como la frecuencia de visitas a urgencias, de ingresos y de dispositivos tecnológicos empleados. Estudio retrospectivo de los pacientes atendidos desde el inicio del programa de CPP (enero 2017 a enero 2020) en un hospital de nivel secundario. Se incluyeron 29 niños, 58,6% varones y edad media a la entrada en el estudio de 2,3 años (DE: 2,4); el 44,8% procedían del ámbito rural. El 41% presentaron multimorbilidad, con mayor frecuencia de patología neurológica. La causa más frecuente de atención en urgencias (n = 360) y hospitalización (n = 145) fue la infeccioso-respiratoria. El 51,7% de los pacientes eran dependientes de dispositivos médicos. Conocer el uso de recursos de esta población puede ayudar a un mejor reparto de los mismos para poder ofrecer CPP con independencia del lugar de residencia.(AU)

This article sets out to describe the characteristics of patients at a second-level hospital who are likely to receive pediatric palliative care (PPC), the frequency of visits to the emergency room, admissions and technological devices used. A retrospective study was carried out of the patients who received care from the start of the PPC program (January 2017 to January 2020) at a secondary-level hospital. Twenty-nine patients were included, 58.6% male with mean age at entry into the study of 2.3 years (SD: 2.4); 44.8% of them were from rural areas. The prevalence of multimorbidity was 41%, with a higher frequency of neurological pathology. Respiratory infection was the most frequent cause of emergency care (n = 360) and hospitalization (n=145). Half of patients (51.7%) depended on medical devices. Better knowledge of the resources used by this population can lead to more effective distribution/management that in turn can enable PPC to be offered regardless of the place of residence.(AU)

Necesidad de cuidados paliativos en pacientes VIH/sida en un hospital de tercer nivel en La Habana. Utilidad del cuestionario NECPAL / Need for palliative care in HIV/aids patients in a tertiary hospital in Havana. Usefulness of the NECPAL questionnaire

Introducción: La atención a la infección por el VIH/sida en Cuba como enfermedad crónica demanda soluciones integradoras, para las cuales la perspectiva de la atención paliativa podría ser una importante contribución.Objetivo: Explorar la necesidad de cuidados paliativos en pacientes VIH/sida, hospitalizados por parte de los proveedores de salud.Método: Se realizó un estudio observacional, de corte transversal, en el Instituto de Medicina Tropical “Pedro Kourí” entre los meses de marzo y abril del 2016, con pacientes infectados por el virus de la inmunodeficiencia humana en etapa sida. Se previeron como criterios de exclusión la voluntad del paciente de no formar parte del estudio y aquellos casos que fallecieran 48 horas después del ingreso. Se aplicó a los médicos de asistencia el cuestionario NECPAL para la identificación de los pacientes con necesidades de atención paliativa.Resultados: De los 123 pacientes estudiados, el 87,8 % fueron hombres, menores de 45 años (66,7 %), con más de 10 años de diagnóstico de VIH (33,3 %). El 65,0 % contaba con CD4+< 200 cél./ml y el 87,0 % con CV detectables. El instrumento NECPAL mostró en 75 pacientes (61,0 %) una identificación positiva. El síndrome de desgaste (p > 0,006, OR 3,9 [IC 95 % 1,4-10,4]) y la presencia de anemia (p > 0,001, OR 4,7 [IC 95 %1,9-11,8]) fueron las variables que se relacionaron con la identificación positiva del NECPAL.Conclusión: El instrumento NECPAL fue útil en la detección de necesidades paliativas por el personal médico de asistencia que atiende a los pacientes VIH/sida, y que no tiene formación en cuidados paliativos. (AU)

Introduction: Management of HIV/AIDS infection in Cuba as a chronic disease demands integrative solutions, to which the perspective of palliative care could be an important contribution.Objective: To explore the need for palliative care in hospitalized HIV/AIDS patients by health providers.Method: An observational, cross-sectional study was carried out at the “Pedro Kourí” Institute of Tropical Medicine between March and April 2016, with patients infected by the human immunodeficiency virus in the AIDS stage. The exclusion criteria were the willingness of the patient not to be part of the study and those cases who died 48 hours after admission. The NECPAL questionnaire was given to attending physicians in order to identify patients with palliative care needs.Results: Of the 123 patients studied, 87.8 % were men, under 45 years of age (66.7 %), with more than 10 years of HIV diagnosis (33.3 %); 65.0 % had CD4+ < 200 cells/mL and 87.0 % had detectable CV. The NECPAL instrument yielded 75 patients (61.0 %) with a positive identification. The wasting syndrome (p > 0.006, OR 3.9 [95 % CI, 1.4-10.4]) and the presence of anemia (p > 0.001, OR 4.7 [95 % CI, 1.9 -11.8]) were the variables that were related to a positive identification by NECPAL.Conclusions: The NECPAL instrument was useful in detecting palliative needs by medical personnel who care for HIV/AIDS patients, and who do not have training in palliative care. (AU)

Trayectorias de complejidad en el final de la vida: un estudio multicéntrico prospectivo observacional longitudinal / End-of-life complexity trajectories: a prospective, longitudinal observational multicenter study

Antecedentes: La complejidad se ha convertido en un tema central en cuidados paliativos. Se describe la evolución de la complejidad en atención domiciliaria y su relación con la ubicación de la muerte. Métodos: Estudio observacional de una cohorte prospectiva en el ámbito de la atención provista por los equipos de soporte a la atención domiciliaria en Cataluña. Los equipos evaluaron y acordaron el nivel de complejidad tras la primera visita y al exitus. El modelo HexCom incluye seis áreas de necesidades (clínicas, psicológicas, espirituales, sociofamiliares, éticas y relacionadas con la muerte), con tres niveles de complejidad: alto, moderado y bajo. Resultados: n = 648 pacientes: oncológicos 426 (65,7 %). Murieron en casa 364 (56,2 %), aumentando hasta el 86,4 % en los enfermos con demencia y al 81 % en los enfermos con fragilidad (p < 0,001). La puntuación de complejidad aumentó de 42 a 114 (p < 0,001), y este aumento fue más acusado en el grupo neurológico (de 32 a 213, p < 0,001). Se halló una asociación lineal entre complejidad y ubicación de la muerte (p < 0,001). La complejidad clínica y la sociofamiliar se asociaron a la ubicación de la muerte fuera del domicilio (p < 0,000). Conclusiones: La complejidad aumenta a medida que nos acercamos a la muerte, y esto se cumple en los grupos de pacientes oncológicos, con fallo de órgano y en los pacientes neurológicos, pero no en la demencia y la fragilidad/multimorbilidad. La complejidad se asocia con la ubicación de la muerte, principalmente en las áreas clínica y sociofamiliar. (AU)

Background: Complexity has become a central issue in palliative care. The evolution of complexity in home care and its relationship to place of death are described. Methods: An observational, prospective cohort study in the context of the care provided by home care supporting teams in Catalonia. Teams evaluated and agreed upon a complexity level after their first visit and after patient demise. The HexCom model includes six need areas (clinical, psychological, spiritual, family environment, ethical, and related to death) with three levels of complexity: high, moderate, and low. Results: n = 648 patients, of which 426 (65.7 %) were cancer patients. A total of 364 (56,2 %) subjects died at home, this figure reaching up to 86.4 % for patients with dementia, and to 81 % for fragile patients (p < 0.001). The Complexity Score increased from 42 to 114 (p < 0.001), an increase that was most pronounced in the neurological group (from 32 to 213, p < 0.001). A linear relationship was found between complexity and place of death (p < 0.001). Clinical and family environment complexity was associated with places of death outside the place of residence (p < 0.000). Conclusions: Complexity increases as death is approached, a relationship that holds for cancer patients, patients with organ failure, and neurological patients, but not for those with dementia or fragility/multimorbidity. Complexity is associated to place of death, mainly in the clinical and family environment areas. (AU)

[Find your 1%: prevalence and mortality of a community cohort of people with advanced chronic disease and palliative needs]. / Busca tu 1%: prevalencia y mortalidad de una cohorte comunitaria de personas con enfermedad crónica avanzada y necesidades paliativas.

OBJECTIVE: To determine the prevalence and profiles of people with advanced chronic diseases in Primary Care and to analyse the elements related to their mortality in order to orient strategies for improvement in this level of care. DESIGN: An observational, analytical and prospective study during 3 years conducted on a cohort of patients with palliative needs. LOCATION: Three Primary Care teams of Osona (Catalonia). PARTICIPANTS: A total of 251 people identified as advanced patients using a systematic population-based strategy that included the NECPAL tool. MAIN MEASUREMENTS: Basic demographic and clinical profile (age, gender, type of residence, health stratification level and main disease); date, place, and cause of eventual deaths. RESULTS: 1% of the adult Primary Care population suffer from advanced diseases, of which 56.6% are women, and with a median age of 85 years. Dementia or advanced frailty is observed in 49.3%, and only 13.7% have cancer. Just under one-quarter (24.3%) live in nursing homes. The accumulated mortality at 3 years is 62.1%, with a median survival of 23 months. Factors significantly associated with the likelihood of dying are cancer, female gender, and over-aging. Patients died at their home (47.3%), in an intermediate care hospital (37.2%), or in an acute care hospital (15.5%), depending on certain explanatory factors. CONCLUSIONS: The prevalence and characteristics of advanced community-based disease coincide with that reported in the literature. Potentially, Primary Care is the reference level of care for these patients, especially if it incorporates nursing homes as a usual field of practice.

[Every week counts: Use of health services and related costs of a community-based cohort of people with advanced chronic diseases]. / Cada semana cuenta: uso de dispositivos sanitarios y costes relacionados de una cohorte comunitaria de personas con enfermedades crónicas avanzadas.

OBJECTIVE: To describe the use of health resources of people with advanced chronicity, quantifying and characterizing its cost to suggest improvements in health care models. DESIGN: Observational, analytical and prospective study during 3 years of a cohort of people with advanced chronicity. LOCATION: Three primary care teams (EAP) of Osona, Cataluña. PARTICIPANTS: 224 people identified as advanced patients through a systematic population strategy. MAIN MEASUREMENTS: Age, sex, type of home, end-of-life trajectory; use, type and cost of resources in primary care, emergencies, palliative teams or hospitalization (in acute or intermediate care). RESULTS: Patients made an average of 1.1 admissions per year (average stay=6 days), 74% in intermediate care hospitals. They lived in the community 93.4% of time, carrying out 1 weekly contact with the EAP (45.1% home care). The average daily cost was 19.4euros, the main chapters were intermediate care hospitalizations (36.5%), EAP activity (29.4%) and admissions in acute hospitals (28.6%). Factors determining a potential lower cost are frailty/dementia as trajectory (p<0.001), living in a nursing-home facility (p<0.001) and over-aging (p<0.001). There are certain differences in the behavior of the EAP related to the global cost and to community resources (p<0.05). CONCLUSIONS: Consumption in intermediate hospitalization and primary care is more relevant than stays in acute care centers. Nursing-homes and home-care strategies are important to attend effectively and efficiently, especially when primary care teams get ready for it.

[Prognostic value of assessment tools on elderly patients with chronic advanced disease and end of life, admitted to an intermediate care centre]. / Valor pronóstico de los instrumentos de evaluación de enfermedad avanzada y de final de vida en ancianos ingresados en un centro sociosanitario.

OBJECTIVE: To apply 3advanced chronic disease evaluation tools in elderly patients admitted to an intermediate and long-term care centre, and evaluate its relationship with mortality. METHODS: The NECPAL tool, PROFUND prognostic index, and Charlson comorbidity index were applied to 87 patients. RESULTS: The NECPAL tool identified 31 patients (35.6%) in need of palliative care, and according to the PROFUND index, 45 (54.7%) had high/very high risk of mortality (≥7 points), and according to Charlson index, 31 (35.6%) had high comorbidity (≥4 points). Of the NECPAL positive patients, 80.5% had a PROFUND index score ≥7, and 48.3% a Charlson index ≥ 4. These percentages were 34.4% and 28.5% in negative NECPAL patients (P<.001 and P≤.06, respectively). Correlations between the 3tools: quantitative (Spearman) number of responses in NECPAL with PROFUND (r=.57; P<.001); with Charlson (r=.214; P<.047) and between PROFUND and Charlson (r=.157; P=.148). Qualitative (kappa) NECPAL (positive/negative) with PROFUND (cut-off 6/7) (0.40; P<.001), and Charlson (cut-off 3/4) (0.19; P=.080) and between PROFUND and Charlson (0.08; P=.399). Mortality prediction (area under the curve): NECPAL 3 months 0.81 (95% CI: 0.62-1.00); 6 months 0.71 (95% CI: 0.53-0.89) and 12 months 0.67 (95% CI: 0.52-0.82). PROFUND 3 months 0.71 (95% CI: 0.50-0.91); 6 months 0.73 (95% CI: 0.58-0.87), and 12 months 0.69 (95% CI: 0.57-0.81). Charlson 3 months 0.72 (95% CI: 0.52-0.91); 6 months 0.62 (95% CI: 0.45-0.80), and 12 months 0.64 (95% CI: 0.50-0.78). CONCLUSIONS: The 3tools were significantly associated with high mortality. A low concordance was found between the results of the different tools.

Atención integral de enfermedades crónicas avanzadas / Comprehensive care for advanced chronic diseases

El 80% de personas con enfermedades crónicas avanzadas (ECA) tienen síntomas no controlados, multimorbilidad y necesidades de cuidados paliativos (CP) no resueltas. El objetivo de este estudio es identificar personas con ECA y necesidad de atención paliativa en Hospitales públicos de agudos del NEA. MÉTODO Estudio observacional, multicéntrico, transversal, para determinación de prevalencia, características clínicas y necesidades de pacientes con ECA y pronóstico de vida limitado identificados con instrumento NECPAL-CCOMS-ICO. Fase cualitativa constó de cuestionarios de dimensiones de atención clínica y organizativa de pacientes con ECA en hospitales de agudos, encuesta semiestructurada de auto evaluación por dimensiones y reuniones con grupos focales. El estudio se realizó entre 05/2018 y 05/2019 en Hospitales Madariaga (Posadas), Vidal (Corrientes,) y Perrando (Resistencia). RESULTADOS Se identificaron 599/1912(31,3%) pacientes con ECA y 342/599(57,1%) que fueron NECPAL+. Edad fue 53,6 años e internación fue 19,8±35,9 días. Cáncer fue la patología más frecuente (n=237, 69,3%). Motivos de internación más frecuentes; reagudización de patología de base (n=215, 62,9%), deterioro estado general (n=171, 50%) y proceso agudo intercurrente (n=135, 39,5%). El Hospital Vidal fue el único con servicio de CP. Cantidad promedio de fármacos en pacientes NECPAL+ fue 6,4. La cantidad de ítems NECPAL; 58,5% de pacientes tuvo 5-9 ítems positivos. La demanda de CP por el equipo médico fue más frecuente en categoría con más ítems positivos. El declive nutricional se vio en 255(74,6%) pacientes y declive funcional en 238(69,6%) pacientes. La vulnerabilidad social estuvo presente en 150 de los pacientes (43,9%). Las barreras mencionadas en la atención de pacientes con ECA fue descontextualización cultural del NECPAL, falta de comunicación del equipo y organización del trabajo, pobreza, falta de medicación, falta de atención domiciliaria. DISCUSIÓN Conocer la prevalencia y características de pacientes con ECA contribuye a la mejora de la calidad de atención centrada en esta población compleja, más joven que en otros estudios, con dependencia severa y un importante declive funcional y nutricional. Los datos contribuyen al futuro desarrollo de registros de pacientes con ECA y que se beneficiarían con cuidados paliativos

Palliative care and end-of-life care for polypathological patients. / Cuidados paliativos y atención al final de la vida en los pacientes pluripatológicos.

Patients with advanced chronic diseases receive fragmented care, which entails high resource consumption and a poor quality of life. Uncertainty in the prognosis and scarce investigation into the importance of symptomatic control in this patient group hinders a proper therapeutic approach. Palliative care teams optimise the use of resources through comprehensive patient care, the optimization of the patient's environment, communication, the preparation of early care plans and the creation of coordinated healthcare circuits, which improve the quality of the patient's care in advanced stages of the disease. In the end-of-life phase, the therapeutic approach is focused on symptomatic control, selecting treatments according to the cause, comorbidities and the patient's wishes. To control refractory symptoms, palliative sedation is considered an indispensable option.

[Living with advanced chronic obstructive pulmonary disease: The impact of dyspnoea on patients and caregivers]. / Vivir con la enfermedad pulmonar obstructiva crónica avanzada: el impacto de la disnea en los pacientes y cuidadores.

AIM: To understand the experiences of patients and caregivers living with advanced chronic obstructive pulmonary disease, the impact of their symptoms and care needs arising from a functional, emotional, and social context. DESIGN: Qualitative study. Phenomenological perspective. Data were collected during 2013-2015. SETTING: Primary, secondary and intermediate care. Osona (Barcelona). PARTICIPANTS: The study included 10 Primary Care patients with advanced chronic obstructive pulmonary disease, their respective 10 caregivers, and 19 primary care professionals, as well as 2 lung specialists, 2 palliative care professionals involved in their care, and one clinical psychologist. METHOD: Theoretical sampling. Semi-structured and in-depth interviews with patients, caregivers, and professionals (47 interviews). RESULTS: The emergent topics identified in patients and caregivers interviews refer to dyspnoea, the predominant symptom without effective treatment and with a major impact on patients and caregivers lives. A symptom with great functional, emotional and social repercussions to which they need to adapt in order to survive. CONCLUSIONS: Beyond pharmacological measures to control respiratory symptoms, proper care of patients with chronic obstructive pulmonary disease, requires understanding of suffering, the losses and limitations that it causes in their lives and those of their caregivers. A palliative, holistic and closer approach to their real experiences, together with an empowerment to adapt to debilitating symptoms, could contribute to a better life in the end-stages of the disease.

Atención paliativa en personas con enfermedades crónicas avanzadas / Palliative care needs in advanced chronic illness

Alrededor del 75% de las personas morirá a causa de una o varias enfermedades crónicas progresivas. A partir de esta proyección, la OMS instó a los países a diseñar estrategias para el fortalecimiento de los cuidados paliativos como parte del tratamiento integral. En Cataluña, España, la medición de la prevalencia de estos pacientes según el debe decir NECPAL CCOMS-ICO© fue de 1.5% de la población. Es una evaluación cuali-cuantitativa, multifactorial indicativa y no dicotómica que completa el médico tratante. En Argentina no conocemos información sobre estos enfermos. Nuestro objetivo fue explorar y caracterizar en una población accesible de la Ciudad Autónoma de Buenos Aires la proporción de pacientes crónicos con necesidades de atención paliativa, mediante el NECPAL CCOMS-ICO©. Se relevaron los hospitales generales de la Región Sanitaria 2: (Piñero, Álvarez y Santojanni) y sus áreas programáticas. En la Región Sanitaria 1 se incorporó al hospital Udaondo de gastroenterología. Se entrevistaron 53 médicos (704 pacientes). Se identificó que 29.5% presentaba enfermedades crónicas avanzadas; el 72.1% de esos pacientes eran NECPAL positivos, más jóvenes que en otros estudios (mediana 64) y más del 98% tenían alto índice de comorbilidad. Se registró la demanda (31.4%) y necesidad (52.7%) de atención paliativa. Se describieron indicadores específicos de fragilidad, progresión y gravedad según enfermedad crónica. El principal hallazgo fue identificar, con un instrumento no basado en la mortalidad, que, en la ciudad de Buenos Aires, 1 de cada 3 pacientes con enfermedades crónicas podría morir en el próximo año y tenía necesidades de atención paliativa.

About 75% of population will die from one or more chronic progressive diseases. From this projection WHO urged countries to devise strategies for strengthening palliative treatment as part of comprehensive care. In Catalonia, Spain, direct measurement of the prevalence of these patients with NECPAL CCOMS-ICO© tool was 1.5% of the population. This tool is an indicative, not dichotomous, quali-quantitative multifactorial evaluation to be completed by the treating physician. In Argentina there is no information on these patients. Our goal was to explore and characterize the proportion of chronically ill patients in palliative care needs, by NECPAL CCOMS-ICO© tool, in an accessible population of the City of Buenos Aires. General hospitals of the Health Region 2 (Piñero, Álvarez and Santojanni) and its program areas were surveyed. In Health Region 1, we surveyed the Udaondo gastroenterology hospital. A total of 53 physicians (704 patients) were interviewed. It was identified that 29.5% of these patients were affected by advanced chronic diseases; 72.1% of them were NECPAL positive, younger (median 64) than in others studies, and more than 98% presented high levels of comorbidity. Palliative care demand (31.4%) and needs (52.7%) were recorded. Specific indicators of fragility, progression, severity and kind of chronic disease were described. The main finding was to identify, with an instrument not based on mortality that, in Buenos Aires City, 1 in 3 patients with chronic diseases could die in the next year and had palliative care needs.

[Adequacy of clinical interventions in patients with advanced and complex disease. Proposal of a decision making algorithm]. / Adecuación de las intervenciones clínicas en pacientes con enfermedad avanzada y compleja. Propuesta de algoritmo para la toma de decisiones.

Decision making in the patient with chronic advanced disease is especially complex. Health professionals are obliged to prevent avoidable suffering and not to add any more damage to that of the disease itself. The adequacy of the clinical interventions consists of only offering those diagnostic and therapeutic procedures appropriate to the clinical situation of the patient and to perform only those allowed by the patient or representative. In this article, the use of an algorithm is proposed that should serve to help health professionals in this decision making process.

El valor de la presencia de enfermería / The worth of nursing presence / Valor presente de enfermagem

[{"text": "Este artículo analiza la narrativa de una experiencia de enfermería en el servicio de Oncología Postquirúrgica en el \r\nInstituto Nacional de Cancerología ESE de Colombia, para identificar en ella el significado de la situación de enfer\r\n-\r\nmería, los conceptos metaparadigmáticos y los patrones de conocimiento de enfermería. La experiencia se refiere al \r\ncuidado de enfermería brindado a un adulto con cáncer al final de la vida. Su análisis permite identificar las cualidades \r\npropias del cuidado de enfermería. Se destaca que la presencia auténtica de enfermería otorga herramientas de cuidado \r\ndesde lo personal que favorecen el logro de las metas de cuidado al final de la vida.", "_i": "es"}, {"text": "This paper analyzes a narrative in the oncological post-\r\nsurgery services at the Instituto Nacional de Cancerología \r\nESE de Colombia, to identify the significance of 'nursing \r\npresence' characteristics, metaparadigmatic concepts, and \r\npatterns of nursing knowledge. This narrative provided \r\nan opportunity to analyze the experiences of an adult \r\nwith cancer at the end of his life with a particular focus \r\non nursing care. It can be concluded that the 'nursing \r\npresence' provided proper tools of care and fulfilled the \r\nessential needs of a patient nearing the end of his life.", "_i": "en"}, {"text": "Este artigo faz uma análise das situações da enfer\r\n-\r\nmagem no serviço Oncológico pós-cirúrgico no Instituto \r\nNacional de Cancerología ESE de Colombia, identifi\r\n-\r\ncando nele o sentido da "Situação de Enfermagem" e \r\ntambém os conceitos de meta-paradigmáticas e padrões \r\nde conhecimento da enfermagem. A experiência refere-\r\nse ao cuidado dum adulto com câncer no final da sua \r\nvida. A análise permite identificar e compreender as \r\nqualidades dos cuidados da enfermagem. É de notar que \r\na presença autêntica da enfermagem gera ferramentas de \r\ncuidado desde o pessoal que suportam alcançar objetivos \r\nde cuidados no fim da vida.", "_i": "pt"}]

Cuidados paliativos na assistência hospitalar: a vivência de uma equipe multiprofissional / Hospice care in a hospital setting: the experience of a multidisciplinary team / Los cuidados paliativos en la asistencia hospitalaria: la vivencia de un equipo multiprofesional

Trata-se de um estudo qualitativo, exploratório e descritivo, que objetivou conhecer a vivência de uma equipe multiprofissional no cuidado paliativo no contexto hospitalar. Participaram do estudo seis membros de uma equipe multiprofissional de saúde, que atende pacientes em cuidados paliativos, de um Hospital Escola no Sul do Brasil. Identificou-se que os profissionais, ao iniciarem sua trajetória de cuidado na terminalidade, referiram frustração e impotência. Contudo, a experiência fez com que encontrassem novos significados para o cuidado prestado, passando a entender a morte como evento natural da vida e a importância de garantir qualidade de vida e conforto ao paciente. Os participantes relataram a necessidade do fortalecimento da comunicação, do trabalho em equipe e de um espaço para discutirem a terminalidade. Assim, a atenção hospitalar deve atender as necessidades do paciente em cuidados paliativos e família, articulando e promovendo ações que garantam o alívio dos sofrimentos e uma sobrevida digna.

The objective of this qualitative, descriptive and explanatory study was to identify the experience of a multidisciplinary team in providing hospice care in the hospital setting. The study included six members of a multidisciplinary health team providing palliative care in a university hospital in the South of Brazil. The results indicate that when professionals began providing care to terminal patients, they experienced frustration and a sense of helplessness. The experience, however, enabled them to find new meanings for care delivery, coming to understand death as a natural event of life, and realizing the importance of ensuring quality of life and providing comfort to patients. The participants reported the need to strengthen communication, teamwork, and to create opportunities to discuss terminality. Thus, hospital care should meet the needs of patients receiving hospice care and those of their families, connecting and promoting actions to ensure patients have their suffering relieved and can survive with dignity.

Estudio cualitativo exploratorio descriptivo, cuyo objetivo era conocer la experiencia del equipo multi-profesional en la atención de pacientes en cuidados paliativos en el ámbito hospitalario. Participaron del estudio seis integrantes de un equipo multi-profesional de la salud, los cuales proporcionan atención a los pacientes en cuidados paliativos en un Hospital Escuela en el sur de Brasil. Se identificó que los profesionales, al comenzar su trayectoria en la atención a pacientes terminales relataron sentimientos de frustración y impotencia, sin embargo, el tiempo hizo que ellos encontraran nuevos significados a los cuidados prestados. Los profesionales identificaron como puntos a trabajar la necesidad de fortalecer la comunicación, el trabajo en equipo y la creación de un espacio para discutir sobre el proceso por el que pasan los pacientes terminales. Finalmente, la atención hospitalaria debe satisfacer las necesidades de los pacientes en cuidados paliativos y familiares, promoviendo acciones que garanticen el alivio al sufrimiento.

A filosofia da medicina de Edmund Pellegrino e os dilemas bioéticos relacionados ao suicídio assistido / The Philosophy of Edmund Pellegrino and the bioethical dilemmas related to assisted suicide

Apesar da crescente ênfase dada à autonomia no processo de tomada de decisões, a mera decisão autônoma nem sempre reflete o bem do paciente. Este artigo sustentará, a partir da filosofia da medicina de Edmund Pellegrino, que o bem do paciente é composto por quatro elementos, um delimitando o outro, com vistas a assegurar maior equilíbrio entre o bem como avaliado pelo médico e o bem como compreendido pelo paciente. A abordagem teleológica da medicina, ou seja, uma abordagem baseada no telos (fim) da medicina, delineia até que ponto as decisões do paciente são condizentes com o seu bem. Segue-se que os pedidos de pacientes por procedimentos como o suicídio assistido não estão acordes com esse fim, e que caberia aos profissionais de saúde fornecer alternativas para prevenir e aliviar o sofrimento dos pacientes, no que se insere a temática dos cuidados paliativos.

Despite the growing emphasis given to autonomy on the decision-making process, mere autonomous decision does not always reflect the patient’s welfare. In this article it is sustained from Edmund Pellegrino’sPhilosophy of Medicine, that the patient’s welfare is composed of four elements, one delimiting the other, toensure a balance between welfare as assessed by the doctor and the welfare as understood by the patient.The teleological approach to medicine, i.e., an approach based on telos (end) of medicine, defines the degreeto which the patient’s decisions are consistent with his or her own welfare. It follows that the patient’s requests for procedures such as physician-assisted suicide are not in accordance with this end, so, it would bethe role of health professionals to make their best to provide alternatives to prevent and relieve the sufferingof patients, and in this point it’s inserted the topic of palliative care.

Radioterapia paliativa a dosis masiva en cáncer avanzado irresecable de cabeza y cuello / Palliative radiation therapy at massive dose in unresectable advanced head and neck cancer

Se presentan 02 pacientes con cáncer de cabeza y cuello localmente avanzado e irresecable que fueron admitidos en el Instituto Nacional de Enfermedades Neoplásicas; el primero con el diagnóstico histológico de carcinoma epidermoide y el segundo con sarcoma fusocelular. A ambos pacientes se les brindo tratamiento con radioterapia externa en dosis masiva de 10Gy/sesión/mes, obteniendo como resultado una marcada disminución del volumen tumoral y con ello una mejora de la calidad de vida según lo referido por los pacientes. Se optó por este esquema de tratamiento por lo avanzado de la enfermedad, alto riesgo de pérdida de vista e intención paliativa. (AU)

We present 02 patients with head and neck cancer, locally advanced, unresectable who were admitted to the National Institute of Neoplastic Diseases, the first with the histological diagnosis of squamous cell carcinoma and spindle cell sarcoma second. Both patients were provided with external radiotherapy 10Gy/sesión/mes massive doses, resulting in a marked decrease in tumor volume and thereby improving the quality of life as reported by patients. We chose this treatment schedule so advanced disease, high risk of vision loss and palliative intent.(AU)

Evaluation by the nursing team of palliative care: a merleau-ponty phenomenological perspective

Objective: To observe an evaluation by the nursing team in relation to the nursing attention provided to the patient in palliative care. Method: This is a descriptive-exploratory study which has adopted a qualitative approach. It will be performed in a private hospital in the state of Rio de Janeiro. The subjects of this research are nurses and nursing technicians working in the palliative care unit of the hospital under consideration. We will follow a research protocol that enables individual characterization in terms of socio-demographic and functional variables. In addition, a semi-structured questionnaire will be used to observe the evaluation of these professionals of palliative care. The variables and the items that compose this instrument will be analyzed in thematic categories.

Vivencias perante a morte: representacoes sociais de familiares de pacientes forade possibilidades de cura / Experiences on facing death: social representations of relatives of patients that have no possibility of a cure / Experiencia ante la muerte: representaciones sociales de familiares de pacientes sin posibilidades terapeuticas

O objetivo com esta pesquisa foi conhecer as representações sociais de familiares de pacientes fora de possibilidades de cura. Trata-se de um estudo de abordagem qualitativa de natureza exploratório-descritiva. Participaram da pesquisa cinco familiares com idade entre 19 e 45 anos. Utilizou-se a técnica de entrevista guiada, com roteiro semiestruturado. O campo de estudo foi um hospital-escola no Distrito Federal. Da análise das entrevistas, emergiram dois eixos distintos. No primeiro, foi possível apreender o arcabouço psicossocial que forja as representações sobre o processo da morte e do morrer. No segundo eixo, verificou-se que os familiares avaliam o cuidado recebido como humanizado ou desumanizado, dependendo da atitude do profissional e das condições físicas e materiais da instituição. De forma geral, os resultados sinalizam a fragilidade do grupo familiar diante de um acontecimento doloroso. Eles reclamam da ausência de apoio da equipe de saúde, de uma comunicação efetiva que poderia fortalecer os vínculos que favorecem a emergência de mecanismos de adaptação no auxilio ao enfrentamento da doença e luto, podendo-se concluir, portanto, que os profissionais de saúde não estão preparados para atender às necessidades desse tipo de paciente.

This study aimed at determining the social representations of relatives of patients that have no possibility of a cure. It is a descriptive and exploratory study with a qualitative approach. Five family members, aged between 19 and 45 years, participated in the survey. Data was collected through guided, semi-structured interviews. The field study was a hospital school in the Federal District. Two distinct lines emerged from the analysis of the interviews: a) the psychosocial framework that forges the representations concerning the process of death and dying; and b) the relatives' health care evaluation as humanized or dehumanized, depending on the attitude of the professional and on the institution's physical and material conditions. The results revealed the weaknesses of a family group in the face ofa painful event. The patients' relatives complained about the lack of support from the healthcare team. According to them an effective communication approach could strengthen links that encourage the emergence of mechanisms of adaptation to confront disease and grief. The study revealed that health professionals are not prepared to attend to the needs of this kind of patient.

El objetivo de este estudio fue conocer las representaciones sociales de familiares de pacientes sin posibilidades de cura. Se trata de un estudio cualitativo, exploratorio y descriptivo del cual participaron cinco familiares de 19 a 45 años. Los datos se recogieron en entrevistas semiestructuradas; el hospital-escuela del Distrito Federal constituyó el campo de estudio. Dos Desde el análisis de las entrevistas habían emergido dos árboles distintos. En el primer fue posible aprehender el andamiaje teórico psicosocial que forja las representaciones referentes al proceso de la muerte y de morir. En el segundo árbol se verificó que los familiares evalúan el cuidado recibido como humanizado o deshumanizado dependiendo de la actitud del profesional y las condiciones físicas y de sustancias de la institución. De modo general, los resultados señalan la fragilidad del grupo familiar enfrente un acontecimiento doloroso. Se quejaron de la falta de apoyo del equipo sanitario, de una comunicación eficaz que podría fortalecer los vínculos que alentar el surgimiento de mecanismos de adaptación en ayuda para combatir la enfermedad y el dolor. Todavía ellos permiten concluir que los profesionales de salud no están preparados para tomar el cuidado de las necesidades de este tipo de paciente.

Preferencia del lugar de muerte y factores relacionados en personas mayores de la isla mediterránea de Ibiza / Preference for place of death and related factors of the elderly in the mediterranean isle of Ibiza

Objetivo. Describir el lugar de muerte preferido por personas mayores que consultaron o eran pacientes de algunos servicios de un hospital general de las Islas Baleares (España), y su posible asociación con otros factores. Métodos. Estudio descriptivo transversal, realizadoen el hospital, perteneciente al área de salud de Ibiza y Formentera, entre febrero y agosto de 2009. Participantes: 105 personas con 65 años o más. Resultados. La edad media fue de 75 ± 7 años, de los cuales 58 eran hombres (55,2 %). En casa, con un 67,6 % (IC 95 %: 58,6-76,6), resultó ser el lugar de muerte preferido por los encuestados; el 6,7 % (IC 95 %:1,9-11,5) preferiría un hospital deagudos, y el 25,7 % (IC 95 %: 17,3-34,1) preferiría una unidad de cuidados paliativos hospitalaria. Todos optaron por los cuidados paliativos de calidad frente a la eutanasia en su etapa final de vida. Conclusiones. Al ser la casa el lugar de muerte preferido por la mayoría de las personas mayores, esta escogencia parece estar influenciadafundamentalmente por la relación familiar y el arraigo, por la presencia de alguna toxicomanía y por el padecimiento de alguna enfermedad quelimite en buen grado la funcionalidad de las personas. En estos casos se observa, entonces, una preferencia por una unidad de cuidados paliativos intrahospitalaria.

Objective. To describe the preference for place of death among elderly people who consulted or were patients of some departments at a general hospital in the Baleares Islands (Spain) and potentialrelationship to other factors. Methods. Descriptive cross-sectional trial developed at a health care clinic in Ibiza and Formentera, from February through August 2009. Participants: 105 ≥ 65 years of age. Results. The mean age was 75 ± 7 years old, 58 males (55.2 %). 67.6 % (95 % CI: 58.6-76.6)of the people surveyed said that their preferred death place was home; 6.7 % (95 % CI: 1.9-11.5) expressed their preference for acute care hospitalsand 25.7 % (95 % C.I.: 17.3-34.1) preferred a hospital palliative care unit. Everyone chose quality palliative care versus euthanasia in the end-of-life stages. Conclusions. Since home was the preferred death place for most of the elderly, this option seems to be basically influenced by family tiesand a sense of belonging, the presence of some kind of substance addiction or a largely disabling disease. With regards to the latter, an in-hospital palliative care unit was preferred.

Factors Related to the Quality of the Dying Process in Cancer Patients / Fatores relacionados à qualidade do processo de morrer na pessoa com câncer / Factores relacionados a la calidad del proceso de morir en la persona con cáncer

This correlational and descriptive research examined the Quality of the Dying Process (QDP) in cancer patients. Data were collected from one significant person for each of the 78 patients who had died, using QDP and communication quality questionnaires. The highest QDP scores were found for social experiences related to: the moment of death, family company and their concern with the person. The lowest score was for symptoms. A statistically significant association (p<0.001) was found between a better QDP and: preparation for death, spending time with the family, concern and care for the patient, communication quality. Conclusions: patient care needs to be focused on the aspects fostering closeness and dialogue with the patient's close relatives, promoting communication in order to detect and handle the real problems, along with efficient pain management, in which humanized care is essential.

Estudo descritivo, correlacional, que indagou a qualidade do processo de morrer (QPM) em pessoas com câncer. A informação foi obtida através de uma pessoa significativa para cada um dos 78 pacientes falecidos, aplicando questionários de QPM e Qualidade da Comunicação. Foram obtidas maiores pontuações da QPM nas experiências sociais relacionadas ao momento de morte, à permanência da família e à preocupação pela sua pessoa. A pontuação mais baixa se relacionou aos sintomas. Obteve-se relação estatisticamente significativa (p<0,001) para melhor QPM em: preparação para morrer, estar com a família, preocupar-se pela pessoa e qualidade de comunicação. Conclui-se que os cuidados requerem orientação para que os entes queridos fiquem perto e possam se comunicar com o paciente, promover comunicação para detecção de problemas percebidos, a fim de identificar e manejar os reais problemas, somando-se ao eficiente manejo da dor, fazendo do cuidado humanizado uma prática iniludível.

Estudio descriptivo, correlacional que indagó la Calidad del Proceso de Morir (CPM) en personas con cáncer. La información fue obtenida con personas que eran significativas para cada uno de los 78 pacientes fallecidos, aplicando cuestionarios de CPM y Calidad de la Comunicación. Se obtuvo mayores puntajes de CPM en las experiencias sociales relacionadas con: momento de muerte, permanencia de familia y preocupación por su persona. El puntaje más bajo se relacionó con los síntomas. Se obtuvo relación estadísticamente significativa (p<0,001) para una mejor CPM en: preparación para morir; estar con la familia; preocuparse por la persona; y, calidad de comunicación. Conclusiones: Los cuidados requieren orientarse hacia la necesidad del paciente de estar cerca de la familia y comunicarse con ella; así mismo se debe promover la comunicación para percibir posibles problemas e identificar y manejar los problemas reales, sumado a un eficiente manejo del dolor, haciendo del cuidado humanizado una práctica ineludible.