"Passage to Paradise" ethics and end-of-life decisions in children

We describe our personal practice in the care of the dying child. There is no on right model of care, and the multidisciplinary team must be sensitive to individual needs. It is important to get the balance of palliation and active treatment right (important at all stages of the illness). Key is careful planning by the whole multidisciplinary team and unhurried and frequent communication with the parents by a few key people. It is important to keep re-checking levels of understanding of the family; at times of stress, little information may be retained. Care should extend to the wider family and friends, and it is important also to consider the needs of hospital staff, both the immediate core team and beyond. Respect for religious and cultural issues is essential, but should not be allowed to interfere with optimum treatment of the child. The validity of different patterns of grieving should be acknowledged. Regular review is essential. There need to be open discussions about capping care, so that only appropriate interventions are given. This may be more difficult if the dying child is awaiting transplantation. The place of death (home, hospice, hospital) will be a matter of individual choice. After the death of the child, we offer follow up care for both the family and the staff.