How Children On Long Term Ventilation Die

Introduction: The number of children receiving invasive long term ventilation (LTV) has increased over recent years. A primary aim of LTV is to enhance quality of life. A major challenge is recognizing if/when LTV is no longer in the child9s best interest. Minimal has been reported regarding the process and quality of death in children receiving LTV. Aim: To review the course leading up to death, and the mode and quality of death in children on invasive LTV Methods: Patient notes were reviewed for demographic, disease and ventilation information, whether/when there had been discussion and planning for end of life care, and the mode of death. Results: 20 children were included. Median age at initiation of LTV was 22 months (5 months-16 years), and at death was 6.5 years (8 months-19 years). All had multiple co-morbidities. The primary underlying condition was neuromuscular in 10, central nervous system disorder in 4, respiratory disorder in 4, and 2 had other diagnoses. There was documented discussion about planning for end of life before LTV was started in 19 cases. All the children had a gradually deteriorating course. 9 died in hospital, 6 at home and 5 in a hospice. 12 children had elective withdrawl of ventilation and 3 children died after an acute deterioration with a decision not to escalate treatement. All these deaths were peaceful. Death occured despite escalation of treatment and ventilation in 5 children, including 3 who received full cardiopulmonary resuscitation. Conculsion: In our centre the majority of children had elective withdrawal of ventilation. Advanced planning for end of life care faciliates a peaceful death. More research is required about the mode and quality of death in children receiving LTV