[Assessment of basic training needs in palliative care in primary healthcare nurses in Spain]. / Valoración de necesidades formativas de nivel básico en cuidados paliativos en enfermeras de atención primaria en España.

AIM: Asses training, perception of readiness and training needs in palliative care (PC) theoretical and practical of primary care nurses in Spain, through descriptive cross-sectional study. DESIGN: Descriptive cross-sectional study. SETTING: Primary care nurses in Spain with online access. PARTICIPANTS: Primary care nurses in Spain, January and February 2021. 344 responses, 339 met the inclusion criteria. MAIN NEASUREMENTS: Sociodemographic variables, PC training, training needs were analyzed. Through Google Forms online questionnaire and INCUE Instrument. Descriptive analyses were performed and the results were compared using the exact symmetry test and the Mann-Whitney test. RESULTS: 82,6% women, with an average age of 45.5years. 86.1% of the nurses had training in PC, been basic in the 45.4%. Only 40.5% feel quite or very prepared to take care for palliative patients. Nurses demanded more training in psycho-emotional and grief and coping with losses. 83.76% passed the theoretical block compared to 43.36% of the practical, detecting higher training needs in the last (P<.001). The passed rates varied depending on the educational level. CONCLUSIONS: Nursing training in PC in primary care continues to be deficient, especially in practical application. Targeted training is necessary to have an impact on the care of people with palliative needs and their families.

[Analysis of the care received by patients with advanced chronic disease in the primary care setting]. / Análisis de la atención recibida por pacientes con enfermedad crónica avanzada en el ámbito de atención primaria.

OBJECTIVE: Analyze the characteristics and health care received by the patients included in a care program for advanced chronic disease («AgéndaECA¼). DESIGN: Descriptive study. LOCATION: Manises Department, Valencian Community, Primary Care. PARTICIPANTS: Patients residing in Manises Department, included in the care program for patients with advanced chronic disease («AgéndaECA¼) in 2018 (n = 268). NECPAL 3.0 positive inclusion criteria. MAIN MEASUREMENTS: Variables related to the characteristics of the patients, place of death, health care received in primary care and hospital care. RESULTS: Average age was 80.9 years. Main diagnosis: dementia and neurodegenerative diseases (42.2%), cancer (31.3%). Average stay in the program 116 days. 33.8% of the patients did not have any hospitalization, 50.6% died at home. Health care was analyzed 6 months before and 6 months after inclusion, hospitalizations decreased significantly (0.93) before, (0.51) after, also decreasing visits to hospital emergencies (1.69), before, (0.89) after. Medical home visits (4.1) before, (5.5) after and nursing home visits (9.3) before, (16.4) after. CONCLUSIONS: Home is the fundamental place of care for patients with advanced chronic disease. The inclusion in a care program increases home visits and decreases hospital care. It is necessary to propose and evaluate strategies for improving the care of patients with advanced chronic disease developed in the primary care setting.

Intra-rater reliability and feasibility of the HexCom advanced disease complexity assessment model.

AIM: To study the intra-rater reliability and feasibility of the HexCom complexity assessment model by analyzing internal consistency, intra-rater reliability and response time. DESIGN: Test-retest study with a selection of 11 clinical situations that cover the full scope of situations assessed by the HexCom model and which are responded to individually. LOCATION: Home care, primary care, hospital and sociosanitary care. Two specialized palliative home care teams (PADES). PARTICIPANTS: A total of 20 professionals comprising 10 experts in palliative home care (PADES) and 10 professionals from general palliative care (primary care, hospital and sociosanitary care). These professionals came from the fields of family medicine (5), internal medicine (2), geriatrics (2), nursing (9), psychology (1) and social work (1). MAIN MEASUREMENTS: Cronbach's alpha, weighted kappa, response time. RESULTS: Cronbach's alpha of 0.91 for HexCom-Red and 0.87 for HexCom-Clin. Intra-rater reliability ranging from good to very good for HexCom-Red (kappa: 0.78-1) and from moderate to very good for HexCom-Clin (kappa: 0.58-0.91). Average response time of 0:57 for HexCom-Red and 3:80min for HexComClin. CONCLUSIONS: HexCom-Red and HexCom-Clin are reliable tools and feasible for use by all professionals involved in both general and specialized palliative care at different levels.

[Questionnaire made to understand the opioid analgesics prescription habits in the community of Madrid (Spain)]. / Cuestionario realizado para comprender los hábitos de prescripción de analgésicos opioides en la Comunidad de Madrid (España).

OBJECTIVE: Pain is the fearest and disabling symptom for cancer patients. The cornerstone of treatment is opioid analgesics. The objective of this research was to relate the opioid consumption existing in the Community of Madrid (CM) with the prescription habits expressed by the Primary Care (PrC) and Palliative Care (PalC) physicians. DESIGN: An opioid prescription habits questionnaire was designed. Sampling was consecutive non-probability. SITE: PrC and specific PalC resources in the CM. PARTICIPANTS: The study population included all the family doctors who worked in PrC in the Madrid Public Health Service and all the physicians who worked in some specific PalC resources, both home-based teams and supportive hospital teams in the CM of the public and private/concerted health network services. MAIN MEASUREMENTS: We asked about the strong and weak opioids most used in moderate-severe oncological and non-oncological pain, the preferred administration route, the safety in the use of opioids in the treatment of pain and the preferred clinical practice guidelines. RESULTS: The questionnaire was answered by 840 PrC physicians (20%) and 56 PalC physicians (45%). For the treatment of moderate-severe cancer pain in both groups of professionals, the first choice was morphine; however, in non-cancer pain for PrC it was fentanyl and morphine for PalC professionals. Regarding the route of administration, 70% of family doctors and 87% of PalC physicians stated that the oral route was the first choice, compared to 27% in PrC and 5% in PalC who preferred the transdermal route. The PrC physicians rated their ability to use opioids as average (4-7/10), while the palliativists considered it as high (8-10/10). In PrC, they declared that they knew, above all, the European Association for Palliative Care (EAPC) and National Institute for Health and Care Excellence (NICE) guidelines, although the largest number answered that they trusted their experience. PalC physicians preferred to use the EAPC guide. CONCLUSIONS: There is a clear disagreement between the actual consumption of opioids and the prescribing habits manifested by family doctors, as well as a false certainty in prescribing these drugs.

[Euthanasia: is this the law we need?] / Eutanasia: ¿es esta la ley que necesitamos?

The Spanish Euthanasia Law introduces a new right that is added to the portfolio of services provided by the Spanish health system and whose application is guaranteed within a period of 40 days. From the perspective of clinical experience, it is argued that without the effective right to quality palliative care and given the current shortcomings in dependant care, this law may send a threatening message to particularly fragile and dependant individuals that will lead to them feeling like a burden to their families and society. It is reasoned that basing the right to die on the dignity of the individual may have unexpected social repercussions. The text of the law presents the flaws of having been written hastily and without the support of advisory entities. There are issues that require clarification with regard to the application of euthanasia within the context of general practice. The conclusion is that this new law will pose more problems of the type it aims to resolve.

[Does primary care intervention have an impact in the place of death for patients in a palliative care program?] / ¿La intervención de atención primaria influye en el lugar de fallecimiento de los pacientes en un programa de cuidados paliativos?

OBJECTIVES: To determine whether there is a link between the place of death and the type of health-care provider: Primary Healthcare Team (PHT), Home Palliative Care Support Team (HPCST), or both. To identify other variables that may affect the place of death. DESIGN OF STUDY: Descriptive, observational, retrospective study. SETTING: Three primary care center, Dirección Asistencial Sureste, Comunidad de Madrid (Madrid, Spain). PARTICIPANTS: Patients over the age of 18 with an A.99.01 episode (patient palliative care supports) according to coding CIAP2, active in their electronic medical record (AP-Madrid) from January 2016 until December 2018 (n=499). Two hundred and twenty four (224) patients did not meet the inclusion criteria. MAIN MEASUREMENTS AND RESULTS: Two hundred and seventy five (275) patients were included. Their average age was 78. Eighty point four (80.4%) (n=221) patients had oncologic disease. Sixty seven point six (67.6%) (n=186) lived in an urban setting. There were significant differences (P<0.0001) between the place of death and the type of health-care provider team. Death occurred at home for: 23.1% (n=6) patients in follow-up by PHTs, 14.5% (n=10) patients in follow-up by HPCSTs, and 29.4% (n=53) patients in joint follow-up; 20.8% (n=46) were oncologic patients and 42.6% (n=23) were non-oncologic patients; 26.5% (n=63) had a main caregiver and 16.2% (n=6) didn't. Death occurred at home for 34.8% (n=31) of rural setting patients and for 20.4% (n=38) of urban setting patients (P<0.007). CONCLUSIONS: Results support a higher percentage of deaths at home with joint follow-up.

Recommendations for the provision of palliative care to people with COVID-19.

The pandemic of SARS-CoV-2 infection, which causes COVID-19, has deeply affected health systems and has had a significant impact on families, communities and nations. A comprehensive response strategy requires, in addition to epidemiological, scientific and technical considerations, for human suffering associated with disease, vulnerability and death not to be forgotten. Palliative care for people with suspicion or diagnosis of COVID-19 with serious evolution, and their families should also be a key part of organized actions that help alleviate suffering and improve quality of life by controlling symptoms, addressing psychological, emotional, social and spiritual needs, support for advanced care planning and its goals, end-of-life care, as well as support in complex decision-making and ethical problems, among others. Recommendations are provided for offering palliative care in COVID-19 pandemic context.

La pandemia de infección por SARS-CoV-2, la cual es causada por COVID-19, ha afectado profundamente a los sistemas de salud y ha ocasionado un enorme impacto en las familias, las comunidades y las naciones. La estrategia de respuesta integral requiere que además de las consideraciones epidemiológicas, científicas y técnicas, no se olvide el sufrimiento humano asociado a la enfermedad, la vulnerabilidad y la muerte. La atención paliativa a personas con sospecha o diagnóstico de COVID-19 con evolución grave y sus familias debe ser también parte clave de la acción organizada que ayude al alivio del sufrimiento y mejore la calidad de vida mediante el control de los síntomas, el abordaje de las necesidades psicológicas, sociales y espirituales, el apoyo para la planificación de la atención avanzada y la articulación de los objetivos de la misma, el cuidado de la persona en la fase final de la vida, así como el soporte ante la toma de decisiones complejas y problemas éticos, entre otros. Se ofrecen recomendaciones para brindar los cuidados paliativos en el contexto de la pandemia de COVID-19.

Do internists know what limitation of therapeutic effort means? / ¿Saben los internistas qué es la limitación del esfuerzo terapéutico?

OBJECTIVES: To ascertain whether internists know what limitation of therapeutic effort (LTE) means and whether training in palliative care affects this understanding. METHODS: A survey was administered to Spanish internists on their knowledge of LTE and the training in palliative care. RESULTS: A total of 273 respondents completed the survey (mean age, 42±12 years), 80.2% of whom were associates. Some 23.8% of the respondents identified the complete definition of LTE. The most often chosen responses were «not starting an active treatment¼(85.0%) and «withdrawing an active treatment¼ (65.9%). Forty-three percent of the respondents lacked training in palliative care, 73.3% considered their level of understanding to be good or very good, 62.3% stated that they became anxious when addressing the planning for end-of-life care with the patient, and 81.3% stated that they had had some conflict with their LTE decisions. CONCLUSIONS: Only 1 of every 4 internists knew the proper definition for LTE, with no association with the level of training in palliative care.

[The impact of patient identification on an integrated program of palliative care in Basque Country]. / Impacto de la identificación de pacientes en un programa de cuidados paliativos del País Vasco.

OBJECTIVE: Evaluate the process and the economic impact of an integrated palliative care program. DESIGN: Comparative cross-sectional study. LOCATION: Integrated Healthcare Organizations of Alto Deba and Goierri Alto-Urola, Basque Country. PARTICIPANTS: Patients dead due to oncologic and non-oncologic causes in 2012 (control group) and 2015 (intervention group) liable to need palliative care according to McNamara criteria. INTERVENTIONS: Identification as palliative patients in primary care, use of common clinical pathways in primary and secondary care and arrange training courses for health professionals. MAIN MEASURES: Change in the resource use profile of patients in their last 3 months. Propensity score by genetic matching method was used to avoid non-randomization bias. The groups were compared by univariate analysis and the relationships between variables were analysed by logistic regressions and generalized linear models. RESULTS: One thousand and twenty-three patients were identified in 2012 and 1,142 patients in 2015. In 2015 doubled the probability of being identify as palliative patient in deaths due to oncologic (19-33%) and non-oncologic causes (7-16%). Prescriptions of opiates rise (25-68%) and deaths in hospital remained stable. Contacts per patient with primary care and home hospitalization increased, while contacts with hospital admissions decreased. Cost per patient rise 26%. CONCLUSIONS: The integrated palliative care model increased the identification of the target population. Relationships between variables showed that the identification had a positive impact on prescription of opiates, death outside the hospital and extension to non-oncologic diseases. Although the identification decreased admissions in hospital, costs per patient had a slight increase due to home hospitalizations.

Encuesta en población abierta respecto a términos relacionados con decisiones al final de la vida.

INTRODUCTION: Concepts related to end-of-life decisions, such as euthanasia, palliative care, advance directives and therapeutic obstinacy, are poorly understood by the general population, which, when facing a terminal situation, is not prepared to choose the best option. OBJECTIVE: Pilot study (n = 544) to find out what the open population understands about terms used in end-of-life situations in four cities of the Mexican Republic. METHOD: Survey via Internet with 18 questions about different terms. It was a descriptive, cross-sectional study. Statistical analysis was carried out. RESULTS: People older than 18 years who were not engaged in health-related professional activities were selected. CONCLUSIONS: Most terms related to end-of-life decisions were found not to be interesting to or understood by a part of the population. The least recognized term was therapeutic obstinacy (62.8%), and the most widely known, palliative care (91%); there was confusion between the terms euthanasia and assisted suicide (47.8%). Age and education level had more influence in the results, than other demographic variables.

INTRODUCCIÓN: Conceptos relacionados con las decisiones que se toman al final de la vida, como eutanasia, cuidados paliativos, voluntad anticipada y obstinación terapéutica son poco comprendidos por la población en general, que en el momento de enfrentar una situación terminal no está preparada para elegir la mejor opción. OBJETIVO: Estudio piloto (n = 544) para conocer lo que la población abierta entiende acerca de términos utilizados al final de la vida en cuatro ciudades de la república mexicana. MÉTODO: Encuesta vía internet de 18 preguntas sobre los distintos términos. Se trató de un estudio descriptivo, transversal, con análisis estadístico. RESULTADOS: Se eligieron personas mayores de 18 años que no trabajaran en profesiones relacionadas con la salud. CONCLUSIONES: La mayoría de los términos del final de la vida no interesaron ni fueron entendidos por parte de la población. El término menos reconocido fue la obstinación terapéutica (62.8 %) y el más conocido, cuidados paliativos (91 %); se confunden los términos eutanasia y suicidio asistido (47.8 %). La edad y escolaridad resultaron de mayor influencia en los resultados, que las otras variables demográficas.

Attitude of the medical personnel of a pediatrics department towards patient death. / Actitud del personal médico de un servicio de pediatría ante la muerte de los pacientes.

Introduction: Tertiary care hospitals' physicians require high emotional competence, since they are faced with the demands of terminally ill patients and their families. Objective: to assess the attitude of physicians of a pediatrics department towards patient death. Method: Pediatrics staff and resident physicians anonymously answered the Attitudes Towards Death (ATD) questionnaire. Absolute frequencies, percentages, means, standard deviations, Student's t-test and the chi-square test were used. Statistical significance was considered with p < 0.05. Results: The questionnaire was answered by 38 physicians, 26 (68.4%) were residents and 12 (37.6%) staff physicians; 15 (39.4%) were males and 23 (60.6%) females. Four residents (15.4%) had a positive attitude versus 2 staff physicians (16.7%) (p = 0.920). Statistical significance was found in items 1 (69.2% of residents versus 100% of staff physicians, p = 0.03), 16 (23% of residents versus 100% of staff physicians, p = 0.001) and 19 (92.3% of residents versus 58.3% of staff physicians, p = 0.01), corresponding to the avoidance, acceptance and professional perspective dimensions. Conclusion: Less than 20% of pediatric physicians have a positive attitude towards death. Most didn't value death as a passage or transition to a better life, or as a solution to life's problems.

Introducción: Los médicos de hospitales de tercer nivel requie-ren alta competencia emocional, ya que enfrentan las de-mandas de enfermos terminales y sus fami-liares. Objetivo: Evaluar la actitud de médicos de un servicio de pediatría ante la muerte de los pacientes. Método: Médicos adscritos y residentes de pediatría contestaron anónimamente el Cuestionario de Actitudes ante la Muerte (CAM). Se utilizaron frecuencias absolutas, porcentajes, medias, desviaciones estándar, t de Student y chi cuadrado. Se consideró significación estadística con p < 0.05. Resultados: Contestaron el cuestionario 38 médicos, 26 (68.4 %) residentes y 12 (37.6 %) adscritos; 15 (39.4 %) hombres y 23 (60.6 %) mujeres. Cuatro residentes (15.4 %) tuvieron actitud positiva versus dos médicos adscritos (16.7 %) (p = 0.920). Se encontró significación estadística en los ítems 1 (69.2 % de residentes versus 100 % de adscritos, p = 0.03), 16 (23 % de residentes versus 100 % de adscritos, p = 0.001) y 19 (92.3 % de residentes versus 58.3 % de adscritos, p = 0.01), correspondientes a las dimensiones evitación, aceptación y perspectiva profesional. Conclusión: Menos de 20 % de los médicos de pediatría tiene una actitud positiva ante la muerte. La mayoría no valoró la muerte como un pasaje o tránsito hacia una vida mejor, ni como una salida a los problemas de la vida.

[Transferring palliative-care patients from hospital to community care: A qualitative study]. / Transferencia de pacientes de cuidados paliativos desde el hospital hasta atención primaria: un estudio cualitativo.

AIM: To know the experience of case-manager nurses with regard to transferring palliative-care patients from the hospital to their homes. DESIGN: Qualitative phenomenological study carried out in 2014-2015. SETTING: Poniente and Almería health districts, which referral hospitals are Poniente Hospital and Torrecárdenas Hospital, respectively. PARTICIPANTS: A purposive sample comprised of 12 case-manager nurses was recruited from the aforementioned setting. METHOD: Theoretical data saturation was achieved after performing 7 in-depth individual interviews and 1 focus group. Data analysis was performed following Colaizzi's method. RESULTS: Three themes emerged: (1) 'Case-management nursing as a quality, patient-centred service' (2) 'Failures of the information systems', with the subthemes "patients" insufficient and inadequate previous information" and "ineffective between-levels communication channels for advanced nursing"; (3) 'Deficiencies in discharge planning', with the subthemes "deficient management of resources on admission", "uncertainty about discharge" and "insufficient human resources to coordinate the transfer". CONCLUSIONS: Case-manager nurses consider themselves a good-quality service. However, they think there are issues with coordination, information and discharge planning of palliative patients from hospital. It would be useful to review the communication pathways of both care and discharge reports, so that resources needed by palliative patients are effectively managed at the point of being transferred home.

[Facilitators and barriers regarding end of life care at nursing homes: A focus group study]. / Dificultades y factores favorables para la atención al final de la vida en residencias de ancianos: un estudio con grupos focales.

AIM: To identify the facilitators and barriers experienced by professional related to end of life care in nursing homes. DESIGN: Descriptive qualitative research with phenomenological orientation, through content analysis. PLACEMENT: Nursing Homes at Primary Care District in Granada (Spain). PARTICIPANTS: Fifteen clinical professionals with, at least 6 months of experience in nursing homes, without specific background in palliative care. METHODS: Three focus groups were undertaken with professionals of different disciplines and nursing homes. Interviews were recorded and transcribed literally. An open and axial coding was performed to identify relevant categories. RESULTS: Professionals identified difficulties in the communication with families related to relatives' feelings of guilt, difficulty in understanding the deterioration of their relative, and addressing too late the issue of death. Regarding decision making, professionals recognized that they do not encourage participation of patients. Advance directives are valued as a necessary tool, but they do not contemplate implementing them systematically. Other difficulties that professionals highlighted are lack of coordination with other professionals, related to misunderstanding of patients' needs, as well as lack of training, and lack of material and human resources. Facilitators include relationships with primary care teams. CONCLUSION: It is necessary to improve communication among nursing homes professionals, families, patients and other health workers.

Caring for patients with rabies in developing countries - the neglected importance of palliative care.

Although limited publications address clinical management of symptomatic patients with rabies in intensive care units, the overwhelming majority of human rabies cases occur in the rural setting of developing countries where healthcare workers are few, lack training and drugs. Based on our experience, we suggest how clinicians in resource-limited settings can make best use of essential drugs to provide assistance to patients with rabies and their families, at no risk to themselves. Comprehensive and compassionate patient management of furious rabies should aim to alleviate thirst, anxiety and epileptic fits using infusions, diazepam or midazolam and antipyretic drugs via intravenous or intrarectal routes. Although the patient is dying, respiratory failure must be avoided especially if the family, after being informed, wish to take the patient home alive for funereal rites to be observed. Healthcare staff should be trained and clinical guidelines should be updated to include palliative care for rabies in endemic countries.

A new measure of home care patients' dignity at the end of life: The Palliative Patients' Dignity Scale (PPDS).

OBJECTIVE: This study aimed to develop a new and brief instrument to be employed in dignity measurement, one based on the perceptions of patients, relatives, and professionals about dignity. METHOD: Surveys of patients receiving palliative care, family caregivers, and palliative care professionals were first carried out (sample 1). In the second step, palliative care patients were surveyed with a pilot questionnaire (sample 2). Finally, a survey design was used to assess patients admitted into a home care unit (sample 3). Sample 1 included 78 subjects, including patients, family caregivers, and professionals. Some 20 additional palliative patients participated in sample 2. Finally, 70 more patients admitted to a home care unit participated were surveyed (sample 3). Together with the Palliative Patients' Dignity Scale (PPDS), our survey included other measures of dignity, anxiety, depression, resilient coping, quality of life, spirituality, and social support. RESULTS: After analyzing data from steps 1 and 2, an eight-item questionnaire was presented for validation. The new scale showed appropriate factorial validity (χ2(19) = 21.43, p = 0.31, CFI = 0.99, GFI = 0.92, SRMR = 0.07, and RMSEA = 0.04), reliability (internal consistency estimations of 0.75 and higher), criterial validity (significant correlations with the hypothesized related variables), and a cutoff criteria of 50 on the overall scale. SIGNIFICANCE OF RESULTS: The new PPDS has appropriate psychometric properties that, together with its briefness, encourages its applicability for dignity assessment at the end of life.

[Use of opioids in palliative care of children with advanced cancer]. / Uso de opiáceos en niños con cáncer avanzado en cuidados paliativos.

INTRODUCTION: Despite advances in the treatment of cancer in paediatric patients, 15% of children die from the illness progression in Chile, and pain is the most significant symptom in advanced stages. Although the World Health Organization guidelines demonstrate that opioids are fundamental in pain management, there is still resistance to their use. The main objective of this article was to describe the experience in the use of opioids for pain management in paediatric patients with advanced cancer in palliative care (PC). PATIENTS AND METHOD: Retrospective study of patients admitted into the PC Program at the Hospital Roberto del Río between 2002 and 2013. Analysis was carried out on demographic data; oncological diagnosis; pain intensity on admission and discharge, according to validated scales; use of non-steroidal anti-inflammatory drugs; weak opioids; strong opioids; adjuvants drugs; the presence of secondary effects resulting from the use of morphine, and the need for palliative sedation. RESULTS: Of the 99 medical records analysed, the median age was 8 years, 64.6% were male, and there was a similar distribution in three oncological diagnosis groups. Upon admission, 43.4% presented intense to severe pain, and upon discharge there were four patients, but with a maximum VAS score of 7 in only one case. Of the 66 patients taking strong opioids, 89% required less than 0.5mg/kg/hr. Constipation was the most frequently observed secondary effect. CONCLUSIONS: Two thirds of the patients studied required strong opioids, with which adequate pain management was achieved, with no serious complications observed. The use of opioids in this group of patients, following a protocol, is considered effective and safe.

[Nurses' perception, experience and knowledge of palliative care in intensive care units]. / Percepciones, experiencias y conocimientos de las enfermeras sobre cuidados paliativos en las unidades de cuidados intensivos.

BACKGROUND: Adequate provision of palliative care by nursing in intensive care units is essential to facilitate a "good death" to critically ill patients. OBJECTIVE: To determine the perceptions, experiences and knowledge of intensive care nurses in caring for terminal patients. METHODOLOGY: A literature review was conducted on the bases of Pubmed, Cinahl and PsicINFO data using as search terms: cuidados paliativos, UCI, percepciones, experiencias, conocimientos y enfermería and their alternatives in English (palliative care, ICU, perceptions, experiences, knowledge and nursing), and combined with AND and OR Boolean. Also, 3 journals in intensive care were reviewed. RESULTS: Twenty seven articles for review were selected, most of them qualitative studies (n=16). After analysis of the literature it has been identified that even though nurses perceive the need to respect the dignity of the patient, to provide care aimed to comfort and to encourage the inclusion of the family in patient care, there is a lack of knowledge of the end of life care in intensive care units' nurses. CONCLUSION: This review reveals that to achieve quality care at the end of life, is necessary to encourage the training of nurses in palliative care and foster their emotional support, to conduct an effective multidisciplinary work and the inclusion of nurses in decision making.

[Non-invasive ventilation improves comfort in pediatric palliative care patients]. / La ventilación no invasiva mejora el confort al paciente paliativo pediátrico.

OBJECTIVE: To analyze the appropriate use of non-invasive ventilation and its contribution to improving comfort in pediatric palliative care patients. PATIENTS AND METHOD: This is a descriptive cross-sectional study comprising 55 palliative care patients from San Juan de Dios Hospital in Barcelona. The effectiveness was evaluated using a register of socio-demographic, clinical-ventilatory and oxymetric parameters, the comfort and dyspnea's grade using Silverman Anderson scale, and pain level using pediatric scales. RESULTS: The effectiveness of the technique was proved by a decreased heart rate (133.53±25.8 vs. 111.04±23.1; p<0.0001), respiratory rate (35.02±12.9 vs. 25.63±5.7; p<0.0001) and an increase of partial oxygen saturation (95.7±2.9 vs. 96.87±7.2; p<0.0001) and partial oxygen saturation/fraction of inspired oxygen ratio (297.12±113.4 vs. 336.97±100.7; p<0.0001). Dyspnea and pain levels improved in 100% of the patients. CONCLUSIONS: The therapy was effective and the comfort improved in 100% of the patients.

[Home parenteral nutrition in patients with malignant bowel obstruction. Ethical considerations]. / Nutrición parenteral domiciliaria en pacientes con obstrucción intestinal maligna. Consideraciones éticas.

Introduction: Background: patients with cancer are one of the main group of patients on home parenteral nutrition (HPN). Patients with malignant bowel obstruction (MBO) represent a challenging group when considering HPN. At the Ethics Working Group of SENPE ethical considerations on this subject were reviewed and a guidelines proposal was made. Methods: a literature search was done and a full set of questions arose: When, if ever, is HPN indicated for patients with MBO? How should the training program be? When withdrawal of HPN should be considered? Other questions should be also taken into consideration. May any Oncologist send home a patient with HPN? The educational program could be shortened? When considering to withdraw parenteral nutrition? Results: HPN in MBO has better outcomes when patients have a good functional status (Karnofsky ≥ 50 or ECOG ≤ 2), expected survival > 2-3 months, and low inflammatory markers. Very few data have been reported on quality of life, but HPN allows a valuable time at home albeit with a considerable burden for both patients and their families. Proposal: once a patient is considered for HPN, there is a need for a deep talk on the benefits, complications and risks. In this initial talk, when HNP should be stopped needs to be included. The palliative care team with the help of the nutrition support team should follow the patient, whose clinical status must be assessed regularly. HPN should be withdrawn when no additional benefits are achieved. Conclusion: HPN may be considered an option in patients with MBO when they have a fair or good functional status and a desire to spend their last days at home.

Introducción: Introducción: los pacientes con cáncer constituyen uno de los principales grupos de pacientes dentro de los programas de nutrición parenteral domiciliaria (NPD). Existe un grupo de pacientes con obstrucción intestinal maligna (OIM) en quienes el uso de la NPD es controvertido. Desde el Grupo de Ética de la SENPE se revisan las cuestiones éticas detrás de la decisión de iniciar la NPD en un paciente con OIM y se propone una propuesta de acción. Método: se procedió a hacer una revisión crítica de la literatura, tras la cual se diseñaron las preguntas que este documento pretendía responder: ¿Está indicado el uso de la NPD en pacientes con OIM? ¿En qué situaciones? Quedarían otros aspectos que también merecen una reflexión: ¿Cualquier oncólogo puede enviar a un paciente a su domicilio con NPD? ¿Debe ser el programa de formación de los cuidados en la NPD igual que el referente a los pacientes con fracaso intestinal de causa benigna? ¿Se debe suspender la NPD en algún momento? Resultados: la NPD en pacientes con OIM consigue mejores resultados en aquellos con una buena situación funcional (índice de Karnofsky ≥ 50 o ECOG ≤ 2), con un pronóstico vital superior a 2-3 meses e, idealmente, con niveles de marcadores inflamatorios bajos. En los escasos trabajos publicados en los que se valoran las ventajas sobre la calidad de vida, se concluye que la NPD permite a los pacientes disponer de un tiempo valioso en su domicilio pero a costa de una carga significativa para ellos mismos y sus familias. Propuesta de acción: una vez considerado como candidato a la NPD, se debe tener una conversación abierta con el paciente y sus familiares en la que se aborden los beneficios potenciales, las implicaciones prácticas y los riesgos. En esa conversación inicial debe también plantearse en qué momento considerar la retirada de la NPD. El responsable de la NPD es el equipo de soporte domiciliario en colaboración con el de nutrición clínica. La situación clínica debe evaluarse de forma periódica de manera que, cuando la NPD no proporcione ningún beneficio adicional, se plantee su retirada, manteniendo el resto de medidas de tratamiento sintomático paliativo. Conclusión: la NPD puede constituir una opción de tratamiento paliativo en pacientes con OIM con buena capacidad funcional y un deseo manifiesto de disponer de más tiempo en su domicilio en los últimos estadios de su enfermedad.

Increasing trend in patients with life-limiting and complex chronic conditions.

INTRODUCTION AND OBJECTIVES: To estimate the frequency of patients with diagnoses associated with life-limiting conditions (LLCs) or complex chronic conditions (CCCs). METHODS: Retrospective mixed population-based and hospital-based cohort study. Study universe consisted of the population aged less than 18 years of an autonomous community in Spain in the 2001-2021 period; the cases were patients admitted to hospital with a diagnosis associated with LLC or CCC during this period. We estimated age-adjusted annual prevalences and analysed changes in trends using joinpoint regression. RESULTS: The prevalence of LLCs increased significantly from 20.7 per 10 000 inhabitants under 18 years in 2001 to 51.3 per 10 000 in 2019. There was also a significant increase in CCCs from 39.9 per 10 000 in 2001 to 54.4 per 10 000 in 2019. The prevalence of patients with any of these conditions rose from 45 per 10 000 in 2001 to 86.8 per 10 000 in 2019; 30.3% of these patients had conditions of both types. There was a turning point in this increasing trend between 2019 and 2020, coinciding with the COVID-19 pandemic. CONCLUSIONS: The prevalence of patients requiring specialized care has increased progressively in the last 20 years, similar to what has happened in other countries. The magnitude of the affected population must be taken into account when planning specialized paediatric palliative care and complex chronic care services.