Towards developing an ethical framework for decision making in long-term ventilation in children.

The use of long-term ventilation (LTV) in children is growing in the UK and worldwide. This reflects the improvement in technology to provide LTV, the growing number of indications in which it can be successfully delivered and the acceptability of LTV to families and children. In this article, we discuss the various considerations to be made when deciding to initiate or continue LTV, describe the process that should be followed, as decided by a consensus of experienced physicians, and outline the options available for resolution of conflict around LTV decision making. We recognise the uncertainty and hope provided by novel and evolving therapies for potential disease modification. This raises the question of whether LTV should be offered to allow time for a therapy to be trialled, or whether the therapy is so unlikely to be effective, LTV would simply prolong suffering. We put this consensus view forward as an ethical framework for decision making in children requiring LTV.

Competencias transversales de los profesionales que facilitan atención domiciliaria a pacientes crónicos / Transferable skills of healthcare professionals in providing homecare in chronically ill patients

OBJETIVO: Determinar, a partir de los análisis de los profesionales de atención domiciliaria, el grado de relevancia de las competencias no técnicas de esos profesionales dedicados a la atención de pacientes con enfermedades crónicas. DISEÑO: Investigación cuanti-cualitativa realizada en 2 fases: la 1. a entre noviembre de 2010 y marzo de 2011 y la 2. a entre diciembre de 2012 y agosto de 2013. Emplazamiento: Región Sanitaria de Barcelona ciudad. PARTICIPANTES: En la primera fase, 30 profesionales pertenecientes a 6 equipos de atención domiciliaria (3 del ámbito de la atención primaria y 3 del ámbito hospitalario). En la 2. a fase, 218 profesionales pertenecientes a 50 equipos de atención primaria (EAP) y a 7 programas deatención domiciliaria y equipos de apoyo sanitario y social (PADES). MÉTODO: Muestreo intencional en la 1. a fase y aleatorio en la 2. a. Se emplearon escalas tipo Likert y grupos focales. RESULTADOS: A partir de la identificación de 19 categorías competenciales en la 1. a fase del estudio, se establecieron, en la 2. a fase, 3 metacategorías competenciales: atención integral centrada en el paciente, organización interprofesional y entre niveles asistenciales y competencia relacional. CONCLUSIONES: Es necesario favorecer y garantizar las relaciones profesionales entre niveles asistenciales, la continuidad asistencial, la concepción biopsicosocial y la atención holística al paciente y a su entorno, contemplando emociones, expectativas, sentimientos, creencias y valores de pacientes y familiares. Es imprescindible el diseño e implementación de formación en competencias transversales en el ámbito de cada centro, a través de metodologías didácticas activas y participativas

AIM: To determine the relevance level of non-technical skills of those professionals dedicated to the healthcare of patients with chronic diseases, from an analysis of home care professionals. DESIGN: Quantitative and qualitative research conducted in 2 phases: 1. st from November 2010 to March 2011 and 2. nd from December 2012 to August 2013. SETTING: Health Region of Barcelona city. PARTICIPANTS: During the 1. st phase, 30 professionals from homecare teams (3 from Primary Care and 3 from Hospitals). In 2. nd phase, 218 professionals from 50 Primary Healthcare Centres and 7 home care programmes. Method: Purposive sampling in was used in the1st phase, and randomized sampling in the 2. nd phase. Likert scales and focus group were used. RESULTS: A total of 19 skill categories were identified in the 1. st phase. In the 2. nd phase 3 metacategories were established: comprehensive patient-centered care, interprofessional organization, and inter-health care fields and interpersonal skills. CONCLUSIONS: It is necessary to improve and secure the professionals relationships between levels of healthcare, continuity of healthcare, biopsychosocial model and holistic attention to patients and relatives, looking at emotions, expectations, feelings, beliefs and values. It is essential to design and implement continuing training in transferable skills in every healthcare centre, through active methodologies

[A multi-centre randomized controlled trial of domiciliary non-invasive ventilation vs long-term oxygen therapy in survivors of acute hypercapnic respiratory failure due to COPD. Non-invasive ventilation in obstructive lung disease (NIVOLD) study]. / Bénéfices de la ventilation non invasive à domicile au décours d'une insuffisance respiratoire aiguë hypercapnique chez les patients BPCO. Étude contrôlée randomisée multicentrique. Étude Non Invasive Ventilation in Obstructive Lung Disease (Nivold).

BACKGROUND: Patients with chronic hypercapnic respiratory failure due to chronic obstructive pulmonary disease (COPD) are very likely to develop acute exacerbations. Non-invasive ventilation is often used to treat acute respiratory failure but little information is available about the benefits of domiciliary non-invasive ventilation in COPD patients with chronic hypercapnic respiratory failure who survive an acute episode. The purpose of this study is to determine whether domiciliary non-invasive ventilation can reduce the incidence of recurrent acute hypercapnic respiratory failure in COPD patients who survived an episode of acute hypercapnic respiratory failure (AHRF). METHODS: A multi-center randomized controlled trial including patients with COPD who survived an episode of AHRF. Patients will be randomly assigned to receive long-term oxygen therapy (LTOT) (no intervention) or domiciliary non-invasive ventilation (active comparator) in addition to LTOT. In France, three university hospitals: Rouen, Caen and Amiens and three general hospitals: Dieppe, Le Havre and Elbeuf are recruiting. INCLUSION CRITERIA: Age above 18 years; patients with COPD who have survived an episode of AHRF; patients weaned from non-invasive or mechanical ventilation for at least seven days following an acute episode; with stable arterial blood gases for at least two days: PaCO(2) greater than 55mmHg and pH greater than 7.35. Exclusion criteria are: age above 85 years, other causes of respiratory failure, obstructive sleep apnoea, adverse psychosocial status, serious co-morbidity. Primary outcome is the frequency of episodes of acute hypercapnic respiratory failure (time frame: up to 102 weeks), secondary outcome is mortality (time frame: 1 month and every 6 months for 2 years). EXPECTED RESULTS: A decreased rate of episodes of acute hypercapnic respiratory failure in the group of patients receiving non-invasive ventilation in addition to long term oxygen therapy.

Ethical challenges in home mechanical ventilation: a secondary analysis.

The aim of this study was to explore the ethical challenges in home mechanical ventilation based on a secondary analysis of qualitative empirical data. The data included perceptions of healthcare professionals in hospitals and community health services and family members of children and adults using home mechanical ventilation. The findings show that a number of ethical challenges, or dilemmas, arise at all levels in the course of treatment: deciding who should be offered home mechanical ventilation, respect for patient and family wishes, quality of life, dignity and equal access to home mechanical ventilation. Other challenges were the impacts home mechanical ventilation had on the patient, the family, the healthcare services and the allocation of resources. A better and broader understanding of these issues is crucial in order to improve the quality of care for both patient and family and assist healthcare professionals involved in home mechanical ventilation to make decisions for the good of the patient and his or her family.

Priority setting up close.

Published accounts of specific priority-setting projects in healthcare are relatively few. This article chronicles the collaborative efforts of a professional practice lead and a bioethicist to strengthen the priority-setting process for a specific home care service. The project included two features not often reported in other priority-setting projects: the entire "frontline team" was involved for the project's duration, and a group of parents was canvassed for their views. Informed by both Daniels's "accountability for reasonableness" approach and challenges levied against it, the article explains the evolution of an assessment procedure, eligibility and priority criteria, and guiding substantive principles and concludes with the "lessons learned" by the project leads.

Análisis de la actividad en las unidades móviles de rehabilitación-fisioterapia en atención primaria / Analysis of the activity of mobile rehabilitation-physiotherapy units in primary care

ObjetivoDescribir la atención domiciliaria que ofrecen los equipos móviles de rehabilitación-fisioterapia (EMRF) como respuesta a las necesidades de la población dependiente, las características que tiene su aplicación y las consecuencias que produce sobre el paciente y su independencia funcional.DiseñoEstudio descriptivo transversal desde 2004 hasta junio de 2007.EmplazamientoMedio comunitario. Los EMRF de atención primaria en Almería.ParticipantesEn total 1.093 pacientes incluidos en el programa.Mediciones principalesSe recogió sistemáticamente el estado de salud de los pacientes (proceso discapacitante principal, motivos de inclusión en el tratamiento, valoración funcional inicial y final e índice de Barthel), los datos sobre la atención fisioterapéutica y el n.o de sesiones.ResultadosUn 64,2% de la muestra fueron mujeres; la edad media fue de 78 años. El tiempo medio de espera para su valoración fue de 4 días y hubo una gran diversidad de procesos discapacitantes principales que han quedado descritos. Existió un elevado porcentaje de síntomas de grave deterioro motor, dolor y debilidad muscular. El 88,6% de los pacientes realizó tratamiento fisioterapéutico; el 11,1% de los pacientes fisioterapia y tratamiento ocupacional y el 0,3% de los pacientes tratamiento ortésico. El número medio de sesiones fue de 12,85. Se describe la variación en el índice de Barthel final tras la intervención realizada (cinesiterapia [61,9%]; combinada con electroterapia [10,2%]; cinesiterapia y educación al cuidador [14,5%], etc.).ConclusionesSe aporta información valiosa respecto a las características de la población geriátrica y dependiente así como la ayuda fisioterapéutica que viene recibiendo y cómo se lleva a cabo el proceso(AU)

ObjectiveTo describe the home care provided by mobile rehabilitation-physiotherapy teams as a response to the needs of the dependent population, the characteristics of their application, and the results they have on patients and their functional independence.DesignA descriptive, cross-sectional study from 2004 to June 2007.SettingCommunity setting. Mobile rehabilitation-physiotherapy teams from Primary Care in Almeria.ParticipantsA total of 1093 patients were included in the programme.Main measurementsData were collected on, the state of the patients’ health (primary disabling process, reasons for inclusion in the treatment, initial and final functional assessment and Barthel Index); details of physiotherapy treatment, and number of sessions.ResultsOf the total sample, the mean age was 78 years and 64.2% were female. The mean waiting time for their assessment was 4 days and there was a wide variety of primary disabling processes described. There was a high percentage of symptoms of severe motor deterioration, pain and muscle weakness. Physiotherapy treatment was given in 88.6%, physiotherapy and occupational therapy in 11.1%, and orthopaedic treatment in 0.3%, of the patients. The mean number of sessions was 12.85. The variation in the Barthel Index after the final therapy was given was, 61.9% for kinesiotherapy, 10.2% combined with electrotherapy, and 14.5% for kinesiotherapy and carer education.ConclusionsValuable information is provided as regards the characteristics of the geriatric and dependent population, as well as the physiotherapy help they are receiving, and also how the procedure is carried out(AU)

Bioética y atención domiciliaria / Bioethics and home care

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Cuidados paliativos en el domicilio / Palliative care in the domiciliary

La atención domiciliaria en el área de los Cuidados Paliativos requiere una coordinación entre el sistema de salud regional, las instituciones de internación hospitalaria y el equipo de trabajo domiciliario. Existen requisitos indispensables para que el paciente pueda permanecer en su casa, cumpliendo un rol principal la familia y el entorno social. No sólo se benefician el paciente y su familia sino también el sistema de salud, ya que se evitarán internaciones hospitalarias largas y de alto costo en hospitales que están más preparados para curar que para cuidar a sus pacientes.Hemos demostrado un apropiado control de síntomas de la persona enferma y logrado una alta conformidad de la familia cuando se realizan los cuidados paliativos a través de un sistema organizado. Se describen factores que contribuyen a un incorrecto cuidado domiciliario: inapropiada transición hospital-domicilio;i nsuficiente alivio del dolor y otros síntomas; mala comunicación e inadecuado soporte familiar. Los principios de la ética: beneficencia,no maleficencia, autonomía, justicia y equidad, algunas veces más teóricos que prácticos en la medicina moderna, se evidencian en los cuidados paliativos domiciliarios.La tarea no es simple, y se propone un cambio de política sanitaria y una actitud diferente de los profesionales de la salud, aceptando la incurabilidad de algunas enfermedadesy las necesidades del enfermo terminal.