Journey from Pediatric Intensive Care to Palliative Care

Abstract

Approximately two-thirds of patients who die in the pediatric intensive care unit (PICU) do so following withdrawal of intensive care treatment. Most often when intensive care treatment is withdrawn, the child remains in the PICU for end-of-life care. This study aimed to examine the process of referral over a 6-year period of children from a PICU to children's hospices for end-of-life care. This study carried out a retrospective review of all children referred from a large tertiary-level United Kingdom PICU to children's hospices over a 6-year period. Information was collected both from the PICU and from the hospices involved. A total of 12 children were transferred over the 6-year period. Discussions about limitation of treatment occurred after an average of 9 days of ventilation, with time from initial referral to transfer taking an additional 4 days such that the mean stay on the PICU prior to transfer was 13 days. Two-thirds of families had prior contact with the palliative care team involved. One-third of the patients were transported to the hospice while still dependent on mechanical invasive ventilatory support. All children were extubated by a PICU consultant within 90 minutes of arrival at the hospice. Overall, eight children died soon after transfer, with four children surviving beyond 2 weeks after transfer. This study suggests that there is a feasible alternative location for withdrawal of intensive care and/or compassionate extubation. The study found that one-third of children transferred to hospice for end-of-life care survived the initial withdrawal of intensive therapy; hence, parallel planning should be discussed prior to transfer to hospice. Information gained from this study has contributed toward the creation of a national care pathway to support extubation within a children's palliative care framework.