Noninvasive Ventilation in Palliative Care and Ethical Dilemma

Abstract

Significant difference exists between validated indications for noninvasive ventilation (NIV) use in children and current real life practice. Lately, dedicated centers have reported exponential growth of NIV use in children and adolescents. Upper airway obstruction, neuromuscular diseases, chronic lung/thoracic conditions, and central respiratory drive failure remain the most prevalent indications. However, the need to alleviate respiratory failure related distress has been increasingly recognized in several other conditions. Palliative care in children with life limiting disorders is a complex continuum of activities. In order to provide the most appropriate care for the patients and their families, the management often oscillates between actively curative and purely supportive actions. Despite unprecedented therapeutic advancements, several neurologic, metabolic, hemato-oncologic, respiratory, and other rare diseases remain with no curative options. Besides, attentiveness to relive suffering, awareness, and availability have moved the boundaries of NIV use toward conditions formerly not considered suitable for such care. Still, NIV has limitations and can, if sustained in inappropriate circumstances, fail to provide relief. A structured professional frameshift should be available for support and ethical guidance in order to provide confidence to patients, families and all the involved caregivers.

International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS

“…It is important to underline that the planning and implementation of each intervention must balance any risk and benefit by taking into account the child's and family's quality of life, as well as the availability of resources and local possibilities. Ethical reflection on the choice of treatment must be imperative for all healthcare professionals(53).1.1 The Childs' needs STANDARDS  PPC should address the physical, psychosocial, spiritual and developmental needs of a child  Distress caused by the disease should be minimized in order to improve the quality of life for the child and family  Symptom control should be adapted to the child's age, setting and culture  All interventions, either pharmacological or non-pharmacological, should be continuously monitored  Evaluation, treatment, monitoring of symptoms and all other needs should be performed by qualified healthcare providers within an interdisciplinary team  All PPC plans should be shared with the child, if possible, and their family Child's needs can be categorized into clinical, developmental, psychological, social and spiritual, although there is much overlap among them. The standards of care defined for the above-entioned areas of intervention are listed below.…”

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

“…More research is needed to reach a consensus about the shared decision-making process, including the identification of the best outcomes that can objectively support the validity of the process, such as child and family satisfaction [ 36 , 37 ].…”

Bridging knowledge gaps: a bibliometric analysis of non-invasive ventilation in palliative care studies

“…Crucial factors that demand attention include healthcare provider perspectives and caregiver support and education [ 13 ] as well as application modalities in particular clinical settings such as intensive care units (ICUs) [ 14 ] or young patients [ 15 ]. Finally, ethical considerations surrounding the use of NIV in palliative care [ 16 ], especially in decision-making, withdrawal, or continuation of NIV support during palliative sedation at the end of life, must be carefully examined [ 17 ].…”