ABSTRACT
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.
Subject(s)
Clinical Decision-Making , Decision Making , Home Care Services, Hospital-Based/organization & administration , Parents/psychology , Professional-Family Relations/ethics , Respiration, Artificial , Respiratory Insufficiency/therapy , Child , Consensus , Home Care Services, Hospital-Based/ethics , Humans , Respiration, Artificial/nursing , Ventilators, MechanicalABSTRACT
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.
Subject(s)
Home Care Services, Hospital-Based , Hypercapnia/therapy , Noninvasive Ventilation , Oxygen Inhalation Therapy , Pulmonary Disease, Chronic Obstructive/complications , Respiratory Insufficiency/therapy , Acute Disease , Adrenal Cortex Hormones/therapeutic use , Ambulatory Care/statistics & numerical data , Combined Modality Therapy , Home Care Services, Hospital-Based/ethics , Home Care Services, Hospital-Based/statistics & numerical data , Hospitalization/statistics & numerical data , Hospitals, University/statistics & numerical data , Humans , Hypercapnia/etiology , Hypercapnia/prevention & control , Noninvasive Ventilation/methods , Noninvasive Ventilation/nursing , Noninvasive Ventilation/statistics & numerical data , Oxygen Inhalation Therapy/statistics & numerical data , Pulmonary Disease, Chronic Obstructive/drug therapy , Pulmonary Disease, Chronic Obstructive/therapy , Respiratory Insufficiency/etiology , Respiratory Insufficiency/prevention & control , Respiratory Therapy , Respiratory Tract Infections/complications , Secondary Prevention , Ventilator WeaningABSTRACT
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.
Subject(s)
Home Care Services, Hospital-Based/ethics , Personal Autonomy , Professional Autonomy , Quality of Life , Respiration, Artificial/ethics , Adult , Attitude of Health Personnel , Beneficence , Caregivers/psychology , Child , Chronic Disease/therapy , Community Health Services , Focus Groups , Health Services Accessibility/standards , Humans , Interviews as Topic , Norway , Patient Rights , Practice Guidelines as Topic/standards , Qualitative ResearchABSTRACT
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.
Subject(s)
Decision Making, Organizational , Health Care Rationing/ethics , Health Priorities/ethics , Home Care Services, Hospital-Based/ethics , Patient Care Team , Child , Child, Preschool , Home Care Services, Hospital-Based/standards , Home Care Services, Hospital-Based/trends , Humans , Patient Care Team/ethics , Patient Care Team/standards , Patient Care Team/trends , Population Dynamics , Respite Care , Social Responsibility , TracheostomySubject(s)
Cross-Cultural Comparison , Nursing, Team/organization & administration , Pain/nursing , Palliative Care/organization & administration , Ambulatory Care/ethics , Ambulatory Care/organization & administration , Cooperative Behavior , Ethics, Nursing , Germany , Home Care Services, Hospital-Based/ethics , Home Care Services, Hospital-Based/organization & administration , Hospital Departments/ethics , Hospital Departments/organization & administration , Humans , Nursing, Team/ethics , Palliative Care/ethics , Patient Care Team/ethics , Patient Care Team/organization & administration , United StatesABSTRACT
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.