Make every effort for parents to be with their child, if they wish. Respect the feelings of parents who cannot face the situation and wish to leave. They may have many conflicting emotions. Don’t “protect” them from this opportunity. Help parents to parent. They may be afraid to get involved and need your help with information. They may not have thought about the value of including brothers and sisters. Best practice documents highlight the importance of offering parents choices (see Summary and further reading section).

Treat parents equally in giving information. Both parents need information and support. Prepare parents and siblings for what they will see, explaining about the machines and other equipment and avoiding complicated terminology… without talking down to them. Explain what you mean if you use words that are unfamiliar in everyday conversation. Asking parents what they have understood is an important way of checking their awareness of the situation.

Help parents to participate in the decision to withdraw treatment, but don’t expect them to make the decision on their own. They will need time to think about what has been said. Parents appreciate knowing what the choices are and that a child may be taken home to die. Explain carefully the arrangements for pain relief, comfort feeds, hydration and facial oxygen, if appropriate. 

Key points

  • Allow parents to be with their baby or child if they choose
  • Help include brothers and sisters, if the parents wish
  • Treat parents equally
  • Explain machines, tubes, needles etc.
  • Involve parents in decision to withdraw treatment 
  • Offer them a private room/space
  • Give parents the choice of being present for the removal of life-saving equipment.

Offer the family the use of a private space in the hours leading up to a change from intensive to palliative care. Some units have dedicated rooms, but you may have to make the best of less-than-suitable space.  Privacy is the primary priority.

If parents want to be present during removal of life-saving equipment, enable them to see what you are doing and to participate if they want to. Any involvement will reinforce the reality of what is happening. It is evidenced that parents need to internalise the reality as an important part of their grieving process. (Worden 2009)