Management of the terminally ill child

Medical Assessment

• Make sure you are armed with as much information about the child and his family as possible
• Make sure you involve all the right people: this might include parents, siblings, other carers. Whether you involve the child him/herself will depend on the child’s age, understanding and state of health and the parents’ wishes. It is often helpful to have another involved professional present, for example the children’s community nurse or district nurse in the community setting or the named nurse or Ward Sister in the in-patient setting, so that someone else is fully aware of the discussion and can answer any questions the family might have after you have left
• Try and arrange things so you are not in a hurry and you are unlikely to be disturbed
• Be methodical: take a thorough history, and perform a full examination. Explore other issues as appropriate. Allow the child and parents time to voice their concerns as fully as possible

Explanations

• Explain symptoms and management as far as you can and as far as you feel is appropriate
• You may not have all the answers: if not, say so

Plans

• Formulate a plan of action in consultation with the parents and/or child.
  Listen to any concerns that arise from this and be prepared to compromise on a management plan if the parents/child want something different
• Run over the plan at the end of the consultation in a language the parents and/or the child can understand. Write the plan down and leave it with the family

Review

• Make a time/date when the management plan will be reviewed, and by whom
• Make sure carers are aware whom they can access in the meantime and how they can contact this person/service, particularly out of normal working hours

Communication

• Leave a written plan with the family. In addition liaise with relevant professionals and carers. Leave clear written instructions in medical records or contact the community team to discuss directly. Many different health care professionals may be involved particularly in the community, and it is important that everyone is aware of any changes in management
• Access to service. Leave clear information with the plan as to who can be contacted where and when. This is obviously particularly important at the end of life, where this information will probably form part of an Advance Care Plan, or end of life Care Pathway

Summary:

• Explanation
• Informed Choice
• Compromise
• Communication
• Regular review
• Access to service