A Guideline on Sedation in Children in the Terminal Palliative Phase

Background: Our academic pediatric palliative team supports families during the palliative phase of their child, both in hospital and at home. In the terminal palliative phase sedatives are started in approximately 60% of the children and often also analgesics because of unbearable suffering and pain. In the Dutch guideline on pediatric palliative care (2013) a guideline on sedation in children in the terminal palliative phase is missing. Both pediatricians and pharmacists in the hospital and general practitioners in the home situation need clear guidelines.

Objective: o develop guidelines on sedation in children in the terminal palliative phase.

Methods: A search in existing pediatric and pharma-therapeutic literature, adult guidelines and use of expert opinions and multiple workgroup meetings with a pediatric nurse and case manager of the pediatric palliative team, two pharmacologists, a pediatric intensivist and a general pediatrician working for the pediatric palliative team.

Results: The first step to sedate in order to provide more comfort to a patient is to start with subcutaneous or intravenous midazolam (Dormicum) continuously after a loading dose, combined with analgesics when pain needs treatment. The midazolam dosage can be increased up to a maximum dose. Subcutaneous or intravenous levomepromazine (Nozinan) can be added, when midazolam is not sufficient to provide comfort. If the combination of midazolam and levomepromazine doesn’t provide sufficient comfort we recommend replacing these agents for intravenous Propofol (Diprivan), Clonidine or Esketamine.

When sedatives are started, discontinuation of fluids and feeding administration should be considered.

Conclusion: To improve the process of terminal palliative care in children and support caregivers in this phase, we developed a guideline on sedation in children in the terminal palliative phase based on pharma-therapeutic knowledge, pediatric literature, expert opinions and adult palliative guidelines.