An advance care plan is a record of a child/family’s wishes around the clinical care of the child. It usually refers to care towards the end of life, but should include decisions about deterioration in health prior to the last days. Important points to note in the preparation of such a plan are:

• Planning for ‘all’ eventualities can be helpful for some families and the teams around them as it clarifies their wishes and opens discussion about how they might be met. It also allows some of the concerns to be dealt with and for the discussion then to be
  ‘put to bed’
• Involve the family/significant carers, the child if possible (many children have strong opinions and wishes), lead clinicians, (from primary, secondary and tertiary care) and other significant health care professionals
• The plan could include intentions for level of intervention following deterioration. This will depend on the child’s needs, but may include a discussion about iv. versus oral versus no antibiotics, or a discussion about oxygen versus bag and mask versus intubation and ventilation
• It allows detailed planning for symptom control and placement of medication in the house if appropriate
• If a ‘do not resuscitate’ or ‘allow natural death’ policy is part of this plan it must follow local protocol
• It may be helpful to include ‘Who to Contact & How’ sections for families at home
• It may be helpful to discuss care at the time of death, and afterwards
• The plan should be disseminated to and discussed with all parties likely to need to follow it. For example the GP, school/college, respite, home carers

The plan, once agreed should have a clearly recorded date of intended review. If family/child want to make changes or revoke it at any time make sure this information is passed on to all plan holders.

Information about plans can be obtained from http://www.togetherforshortlives.org.uk/assets/0000/1486/6c_Advance_Care_Plan_2012.pdf

Limitations of the plan:

• The document/letter/part of the notes in which this plan is recorded is not a legal document and although the intention is that the plan should be followed, clinicians are not legally bound to do this. They are bound to act in the child’s best interests. This may be particularly relevant to the ambulance service, who, by default will start resuscitation on all patients
• School may also have policies that require them to call 999 if a child, however much it was expected, deteriorates under their care. This should be explored with the school and explained to the parents & child.