Use of formal advance care planning documents: a national survey of UK Paediatric Intensive Care Units.

Abstract

Advance Care Planning (ACP) is nationally a core element of adult and paediatric palliative care strategies. It is defined as a process of discussion between an individual, their care providers and those close to them, about future care. Formal procedures and processes can help with some of the most difficult elements of communication related to ACP. The majority of children who die do so in a Paediatric Intensive Care Unit (PICU). This survey aimed to identify and compare paediatric ACP documents that are in use within UK hospitals with a PICU. Email survey of lead clinicians from UK PICUs (n=28). 24 (86%) questionnaires were returned. 14 (58%) responded that formal ACP documents were currently in use within their hospital trust. Of the remainder, 2 (8%) detailed plans to launch local ACP documents in the near future, 1 (4%) had a 'Children and Young Persons Deterioration Management (CAYPDM) Document' and 3 (12%) listed rapid discharge and extubation pathways. 6 (25%) provided details of the document in use. They varied widely in terms of their presentation, content and intended use with some having been developed locally and others having been adopted across regions. There is variation around the UK in the existence of formal ACP documents for paediatric patients with palliative care needs, as well as variation in the type of document that is used. Consideration of a national policy should be informed by further review and evaluation of these documents, as well as current practice in ACP.