A growing number of children with life-limiting conditions (LLCs) are being cared for in paediatric critical care (PCC) settings. Children with LLCs admitted to PCC are at a high risk of developing complications and many die after prolonged admissions. Relatively few of these patients and their parents or carers have had documented discussions about their wishes for care in the event of a serious clinical deterioration before admission to PCC. There is a need for improved understanding of (1) how parents arrive at decisions regarding what is best for their child at times of critical illness and (2) the role of parallel planning and advance care plans in that process. This review examines the complexities of decision-making in children with LLCs who are admitted to PCC settings.
Like any new specialty, paediatric palliative medicine is facing challenges as it establishes itself. While many of the required core skills have their roots in adult palliative medicine, its practitioners come from a range of paediatric backgrounds that include oncology, community paediatrics, neurodisability and acute pain. Such heterogeneity has been invaluable in bringing together the diverse set of skills and competencies needed by children and families facing life-limiting illness. At the same time, it brings its own challenges in establishing consistent standards of clinical expertise, education and research--essential if children are to have access to the same degree of medical expertise in palliative care already available to most adults. This article traces the origins of palliative care in children, examines its current strengths and challenges, and considers how those might shape its future.
Published, controlled evidence on the pharmacological interventions for pain in CYP with LLCs is limited. The evidence that is currently available evaluated pain largely as a secondary outcome and the drugs used were all adjuvants and not always commonly used in general paediatric palliative care for pain. Based on current data this systematic review is unable to determine the effects of pharmacological interventions for pain for CYP with LLCs. Future trials with larger populations should examine the effects of the drugs commonly used as analgesics; with the rising prevalence of many LLCs this becomes more necessary.
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