Long-term Ventilation In Children Research Articles

Technology solutionism in paediatric intensive care: clinicians’ perspectives of bioethical considerations

BackgroundThe use of long-term life-sustaining technology for children improves survival rates in paediatric intensive care units (PICUs), but it may also increase long-term morbidity. One example of this is children who are dependent on invasive long-term ventilation. Clinicians caring for these children navigate an increasing array of ethical complexities. This study looks at the meaning clinicians give to the bioethical considerations associated with the availability of increasingly sophisticated technology.MethodsA hermeneutic phenomenological exploration of the experiences of clinicians in deciding whether to initiate invasive long-term ventilation in children took place, via unstructured interviews. Data were analysed to gain insight into the lived experiences of clinicians. Participants were from PICUs, or closely allied to the care of children in PICUs, in four countries.ResultsThree themes developed from the data that portray the experiences of the clinicians: forming and managing relationships with parents and other clinicians considering, or using, life sustaining technology; the responsibility for moral and professional integrity in the use of technology; and keeping up with technological developments, and the resulting ethical and moral considerations.DiscussionThere are many benefits of the availability of long-term life-sustaining technology for a child, however, clinicians must also consider increasingly complex ethical dilemmas. Bioethical norms are adapting to aid clinicians, but challenges remain.ConclusionDuring a time of technological solutionism, more needs to be understood about the influences on the initiation of invasive long-term ventilation for a child. Further research to better understand how clinicians, and bioethics services, support care delivery may positively impact this arena of health care.

Long-Term Ventilation in Children with Medical Complexity: A Challenging Issue.

Children with medical complexity (CMCs) represent a subgroup of children who may have congenital or acquired multisystemic disease. CMCs are frequently predisposed to respiratory problems and often require long-term mechanical ventilation (LTMV). The indications for LTMV in CMCs are increasing, but gathering evidence about indications, titration, and monitoring is currently the most difficult challenge due to the absence of validated data. The aim of this review was to examine the clinical indications and ethical considerations for the initiation, continuation, or withdrawal of LTMV among CMCs. The decision to initiate long-term ventilation should always be based on clinical and ethical considerations and should be shared with the parents.

Long-term ventilation in children with multiple organ failure in early neonatal period

Long-term ventilation in children with multiple organ failure in early neonatal period

The impact of long-term ventilator-use on health-related quality of life and the mental health of children with neuromuscular diseases and their families: need for a revised perspective?

BackgroundLife extension by medical interventions and health-related quality of life (HRQOL) are sometimes conflicting aspects of medical care. Long-term ventilation in children with neuromuscular disease is a well-established life-extending procedure and often at the center of this conflict. HRQOL and the mental health of affected children and their families become even more important in respect to emerging therapies in neuromuscular diseases with longer life-expectancy of treated patients and considerable costs of medical treatment.MethodsWe performed a questionnaire survey in a total of forty-three families of children with neuromuscular disease treated in the University Medical Center Hamburg-Eppendorf and the Children’s Hospital Altona. We evaluated self- and proxy-reported HRQOL and mental health outcomes of affected children and their parents using validated and age-appropriate instruments.ResultsCompared to normative data, children with neuromuscular diseases and their families experienced a lower HRQOL and mental health. However, there was no additional negative influence on the overall HRQOL by ventilator use.ConclusionsAs ventilator use was not responsible for the reduction of HRQOL and mental health our data contributes an important aspect to the discussion about life-prolonging procedures, in particular mechanical ventilation, in severly disabled patients.

Exploring Parental Decision Making Regarding Long-Term Ventilation for Children with and Without Severe Neurological Impairment (RP408)

Exploring Parental Decision Making Regarding Long-Term Ventilation for Children with and Without Severe Neurological Impairment (RP408)

Long-term ventilation for children with chronic lung disease of infancy.

Modern medical advances have resulted in an increased survival after extremely preterm birth. However, some infants will develop severe bronchopulmonary dysplasia (BPD) and fail to wean from invasive or noninvasive positive pressure support. It remains unclear which infants will benefit from tracheostomy placement for chronic ventilation. Once the decision to pursue chronic ventilation has been made, questions remain with respect to the timing of tracheotomy surgery, optimal strategies for mechanical ventilation, and multidisciplinary care in both the inpatient and outpatient settings. The appropriate time for weaning mechanical ventilation and tracheostomy decannulation has similarly not been determined. Although there remains a paucity of randomized controlled trials involving infants with severe BPD, a growing body of evidence suggests that chronic ventilation via tracheostomy is beneficial to support the growth and development of severely affected preterm children. However, delivering such care is not without risk. Chronic ventilation via tracheostomy requires complex care coordination and significant resource utilization. When chronic respiratory insufficiency limits a preterm infant's ability to grow and develop, chronic invasive ventilation may facilitate neurodevelopmental progress and may lead to an improved long-term outcome.

Long-term ventilation in children

Abstract Long-term ventilation (LTV) is now an accepted treatment for children with a wide variety of conditions. Respiratory support can be delivered via a mask or a tracheostomy and can range from CPAP to treat obstructive sleep apnoea, to 24 hour a day sophisticated invasive ventilation. Patient numbers are increasing out of proportion to population growth, suggesting that more children are being supported due to changes in societal expectation, improved survival in PICU, and the availability of more advanced ventilators. LTV can enable a child with a complex medical condition to thrive at home surrounded by their family and ultimately be liberated from ventilation as they grow. Alternatively, it can represent a lifelong burden of increasing dependency, accumulating co-morbidities and vanishing independence. In this review the indications for LTV, the processes required to achieve successful discharge, and the outcome for children receiving this treatment are discussed. Future directions for LTV services are also considered.

Section 3: Ethics of initiation of long-term ventilation in children at home

Despite increasing complexity and costs, some recently developed medical technologies have been embraced for their promise of helping children to live longer, even though it may not always be clear...

Abstract P-389: A REVIEW OF THE ETHICAL CONSIDERATIONS RELATING TO LONG TERM VENTILATION IN CHILDREN WITH SPINAL MUSCULAR ATROPHY TYPE -1. HAS NUSINERSEN CHANGED THE LANDSCAPE?

Aims & Objectives: Increasing numbers of children and young adults are recipients of long-term ventilation at home. The decision to opt for long-term ventilation in children with Spinal Muscular Atrophy Type-1 (SMA-1) is one that has historically polarised opinion amongst clinicians. Whilst in other neuromuscular conditions outcomes and positive impact on quality of life are evident, outcome studies and quality of life surveys that focus on SMA-1 are scarce, with variable results and consist of small numbers. Methods In December 2016 the antisense oligonucleotide Nusinersen became the first approved drug to be used to treat SMA-1. In clinical trials, the drug halted the disease progression and was found to significantly improve motor function in around 60% of infants with the condition. The drug, which comes at a significant cost, has allowed for some cautious optimism amongst the medical community and has, in the author’s opinion, significantly changed the ethical landscape relating to long term ventilation decisions surrounding SMA-1. Results Balancing the four ethical principles of beneficence, non-maleficence, autonomy and distributive justice in this setting has always been a bioethical conundrum. Clinical management of these children varies internationally and is influenced by local societal norms, legal frameworks and whether healthcare is publicly or privately funded. Conclusions The article examines what ethical challenges paediatricians and families face in long-term ventilation decisions in children with the condition as well as how Nusinersen is bound to influence the ethical decision making in favour of LTV provision for these children.

Decisions around Long-term Ventilation for Children. Perspectives of Directors of Pediatric Home Ventilation Programs.

The decision of whether to initiate or forgo long-term ventilation (LTV) for children with life-limiting conditions can be complex and impactful. Providers are responsible for helping families to understand the consequences of their options and guiding them through shared decision-making, but little has been published on how to do this. To assess how directors of pediatric home ventilation programs facilitate shared decision-making with families facing decisions of whether to initiate or forgo LTV for their children with life-limiting conditions. In addition, to assess directors' perspectives on these families' decisional needs. Purposeful recruiting of directors/codirectors of pediatric home ventilation programs at children's hospitals was used. We performed semistructured interviews using an open-ended interview guide developed de novo to assess their approach to informed, shared decision-making around LTV and their perspectives on these decisions. Qualitative data analysis was conducted using a thematic approach based on framework analysis in which thematic saturation was achieved. A sample of 15 experienced physician directors across North America was interviewed. All (15/15) inform families of the potential benefits and burdens/risks of LTV for the child and of the option to forgo LTV. All stress to families the physical, emotional, and social impact of caring for a child using LTV on the family; 12 directors also highlight the financial impact. All recommend that decision-making around LTV should be interdisciplinary, initiated early, and not rushed; nine described their approach as guided by the family's goals for the child and their family. All recommend that providers be transparent, candid, active listeners, and supportive. All directors believe that the family's decision should be respected, but vary in the extent to which they recommend an option to families. They described barriers to decision-making that stem from families, providers, and other sources. As providers who follow children using LTV, directors of pediatric home ventilation programs have perspectives regarding the decisional needs of these families and how to meet them that can help inform and shape the practices of other providers who assist families facing this decision.

Pediatric home mechanical ventilation: A Canadian Thoracic Society clinical practice guideline executive summary

ABSTRACTOver the last 30 to 40 years, improvements in technology, as well as changing clinical practice regarding the appropriateness of long-term ventilation in patients with “non-curable” disorders, have resulted in increasing numbers of children surviving what were previously considered fatal conditions. This has come but at the expense of requiring ongoing, long-term prolonged mechanical ventilation (both invasive and noninvasive). Although there are many publications pertaining to specific aspects of home mechanical ventilation (HMV) in children, there are few comprehensive guidelines that bring together all of the current literature. In 2011 the Canadian Thoracic Society HMV Guideline Committee published a review of the available English literature on topics related to HMV in adults, and completed a detailed guideline that will help standardize and improve the assessment and management of individuals requiring noninvasive or invasive HMV. This current document is intended to be a companion to the 2011 guidelines, concentrating on the issues that are either unique to children on HMV (individuals under 18 years of age), or where common pediatric practice diverges significantly from that employed in adults on long-term home ventilation. As with the adult guidelines,1 this document provides a disease-specific review of illnesses associated with the necessity for long-term ventilation in children, including children with chronic lung disease, spinal muscle atrophy, muscular dystrophies, kyphoscoliosis, obesity hypoventilation syndrome, and central hypoventilation syndromes. It also covers important common themes such as airway clearance, the ethics of initiation of long-term ventilation in individuals unable to give consent, the process of transition to home and to adult centers, and the impact, both financial, as well as social, that this may have on the child's families and caregivers. The guidelines have been extensively reviewed by international experts, allied health professionals and target audiences. They will be updated on a regular basis to incorporate any new information.

Decision making in long-term ventilation for children

Decision making in long-term ventilation for children

Domiciliary tracheostomy long-term ventilation for children with neuromuscular disease: A framework for ethical decision-making

Decisions about long-term ventilation in children can be clinically contentious and ethically challenging. In this article, the relevant legal, professional and moral principles inherent in such cases are explored. We commend the central importance of deliberation in the assessment of best interests, and propose a practical framework to assist the parent–clinical team to reach decisions in as transparent and equitable a manner as possible.

Long-term ventilation in children: Ten years later

IntroductionHome mechanical ventilation (HMV) represents a treatment option for patients with chronic respiratory failure and has changed prognosis and survival of many disorders in children. The aim of this study was to characterize a group of children on long-term mechanical ventilation (LTMV) for a period longer than 10 years. MethodsA retrospective analysis was carried out including patients on LTMV for more than 10 years (LTMV-10) in a tertiary pediatric hospital. Statistical analysis: PASW Statistics 18®. ResultsThirty-one children (61% female) belong to the LTMV-10 group. Median age at the beginning of ventilatory support was 3 years (birth to 13 years). Main indications for assisted ventilation were neuromuscular disease (n=12, 39%), metabolic disease (n=7, 23%) and central hypoventilation (n=6, 19%). Volume ventilation was used in 2 children, and positive pressure ventilation in the others, mainly bilevel positive airway pressure (n=25, 81%). Invasive ventilation via tracheostomy was used since the beginning in four cases, and subsequently in two other children. The mean time of ventilatory support was 146 months and the maximum was 219 months. Respiratory morbidity was the most frequent cause of hospitalization and the annual rate of such episodes was 0.17 per child. Global mortality rate was 19%. ConclusionsHMV programs provide necessary and safe assistance for children with severe chronic respiratory failure. As shown in our series, it is possible to be kept on this respiratory support modality for long periods with good compliance and a small number of hospitalizations.

WITHDRAWN: Long-term ventilation in children: Ten years later

This article has been withdrawn for editorial reasons because the journal will be published only in English. In order to avoid duplicated records, this article can be found at http://dx.doi.org/10.1016/j.rppnen.2014.03.017. The Publisher apologizes for any inconvenience this may cause. The full Elsevier Policy on Article Withdrawal can be found at http://www.elsevier.com/locate/withdrawalpolicy.

Paediatric long term ventilation; the right or wrong move? A critical analysis based on case studies in picu, exploring the controversial issues surrounding the initiation of long term ventilation in children with chronic disease

AimThe number of children in the UK that are supported by long term ventilation (LTV) has increased over the last decade, creating questions about its viability. This analysis does not...

Ethical aspects of home long term ventilation in children with neuromuscular disease

Increasing numbers of children and young adults are now receiving home ventilation. Whereas in some neuromuscular conditions the outcome and quality of life gains are clear cut; in others eg Spinal Muscular Atrophy Type I there are a few outcome studies with conflicting results and it is more difficult to balance the ethical concepts of beneficence, non-maleficence, autonomy and distributive justice. As a result there are widespread variations in the clinical management of these children. This article examines decision-making in these areas seen from the perspective of the individual, the family and society.