End of life care for infants, children and young people with life limiting conditions: summary of NICE guidance

Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. Preferred place of care and place of death Organ and tissue donation (see recommendation 1.1.19 in the full NICE guideline 2 ) Management of life threatening events, including plans for resuscitation or life support Specific wishes, such as on funeral arrangements and care of the body A distribution list for the advance care plan [Based on the experience and opinion of the GC] Share the advance care plan with the child or young person and their parents or carers (as appropriate), and think about which professionals and services involved in the individual child or young person's care should also share it, for example: Healthcare professionals from primary, secondary, or tertiary services, including with specialists in the child's underlying life limiting condition, hospice professionals, and members of the specialist palliative care team (see recommendation 1.5.4 in the full NICE guideline 2 ) Social care practitioners Education professionals Chaplains Allied health professionals (such as physiotherapists, occupational therapists, and psychological therapists). [Based on very low quality evidence from qualitative studies and the experience and opinion of the GC] For children and young people with life limiting conditions who are approaching the end of life and are being cared for at home, services should provide (when needed): Advice from a consultant in paediatric palliative care (such as by telephone) at any time (day and night) Paediatric nursing care at any time Home visits by a healthcare professional from the specialist paediatric palliative care team (see recommendation 1.5.4 in the full NICE guideline 2 ), for example, for symptom management Practical support and equipment for interventions including oxygen, enteral nutrition, and subcutaneous and intravenous therapies Anticipatory prescribing for children and young people who are likely to develop symptoms.