Documenting advance care planning discussions and advance care plans

  • Advance care planning discussions generally progress over time. It is unusual for decisions to be made and a plan agreed upon after the first conversation (Wolfe et al. 2000; Wolfe et al. 2014).

    It is critically important that the key elements of any advance care planning discussion are documented, even if a plan has not yet been decided. Simply knowing that the concept has been raised with the family can be very helpful for health professionals caring for a child in a crisis.

    Examples of helpful information include the following:

    ‘I raised the question of how we should approach a sudden deterioration in (child’s) health with his mother today. She agreed that it was important but asked that we wait until her husband can be present. plan to talk about it at the next outpatient appointment in six weeks.’

    ‘(Child’s) parents and I discussed what we should do in the event of a serious respiratory tract infection. At this stage, they feel that although they are tending toward prioritising her comfort, they cannot make specific decisions ahead of time. They have asked for guidance from the health professionals involved in caring for (child) when she next becomes ill.’

    Documentation of advance care planning discussions may take the form of a letter or a note in the child’s record. The Thinking ahead framework includes forms designed specifically for this purpose.

    If decisions have been made about specific interventions, it is important to record them in a concise, readily identifiable and easily accessible document. Tertiary centres generally have these available. All health services in Victoria should have an advance care planning alert system to assist the treating team to quickly find the advance care planning documentation when required.

    These documents are communication tools rather than legal documents, and do not need to be signed by parents. While they currently don’t have the force of a legally executed instrument in Victoria, a doctor is less vulnerable from a legal perspective if they can document they have considered the values and preferences of the child and their family when making medical treatment decisions. If the Victorian Government’s Medical Treatment Planning and Decisions Bill 2016 is passed, it will take effect after March 2018 and will clarify this matter significantly.

    The Thinking ahead framework includes a ‘Goals of patient care summary’ to help document decisions that have been made.

    Documentation must be updated as discussions progress or as the child’s condition changes.