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‘Giving choice to families on a difficult journey’
Despite extensive technological advances and improved survival in paediatric intensive care unit (PICU) patients, many families are faced with a redirection in the aims of treatment to a journey of palliation. This transition in care from cure to palliation is difficult (and sometimes unimaginable) for the families involved, and it is also challenging for professionals, technically and emotionally. There are no ‘second chances’ in end-of-life care. The experience and memories of that journey will remain with the relatives forever. There is increasing objective evidence of the importance of parental choice during the end-of-life care of their child, and this is no less so in the choices surrounding place of death.1 Laddie et al 2 describe their experience of withdrawal of mechanical ventilation outside the PICU, with a view to providing guidance for professionals who may be involved in such terminal care. In the report, dividing the process into five phases provides a practical framework, and the importance of experience and training is highlighted at all stages.
End of life is unpredictable, and withdrawal of mechanical ventilation outside the PIC means that the team embarking on this redirection-in-care will be working in an unfamiliar environment. Although the local palliative care team is familiar with the surroundings, it may be less familiar with the process of endotracheal tube extubation. Early liaison with the local team should be undertaken. Families must never be promised an option at the end of life that is not guaranteed to be available. Many other teams are often involved, including the team transporting the child from the PICU. Preplanning and thorough briefing for teams as well as the families …
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