Palliative sedation

 DO

• Introduce palliative sedation early during Advance Care Planning conversations in preparation for the last stage of life and at the child's dying stage.
• Check with the multidisciplinary team that all conditions for palliative sedation are met. 
• Consult experts and/or paediatric palliative care teams about communication about palliative sedation and the implementation of palliative sedation.
• When palliative sedation has been decided upon, discuss the process of palliative sedation with the child, parents and/or loved ones. Pay attention to purpose of palliative sedation, course of the dying process, implementation of palliative sedation, and agreements between child, parents and caregivers.

 DO

• Use the step-by-step plan for the recommended agents and corresponding dosage schedule in continuous palliative sedation.
• If symptom-oriented medication (e.g., morphine) is given continuously parenterally, continue the symptom-oriented medication and the medication for the purpose of continuous palliative sedation via a separate pump to prevent unwanted increase in symptom-oriented medication when the dosage of sedatives is increased.
• In children with alcohol abuse, drug use and/or higher doses of psychopharmaceuticals (including chronic use of benzodiazepines with the indication of antiepileptic drugs), consult with paediatric palliative care team prior to palliative sedation.
• If in doubt or questions about necessary dosages, consult with a paediatric palliative care team.

• In case of no or little effect of subcutaneous administration of midazolam and/or levomepromazine, consider switching to intravenous administration.
• When administering medication intravenously, consider administering boluses slowly over several minutes because of the risk of apnoea with some agents.

 DO

• Deploy acute palliative sedation when all of the following criteria are present: 
  • An acute life-threatening complication that cannot be treated causally or symptomatically; 
  • The complication leads to unbearable suffering; 
  • The child is expected to die within minutes/hours due to the complication. 
• Anticipate if acute complications are expected during the palliative phase by: 
  • Discussing the possibility in advance with child, parents and/or loved ones; 
  • Creating a plan (available to all involved) for acute sedation if needed.

 DO

• Evaluate the effect of palliative sedation after 30 minutes using comfort score and/or FLACC score and also pain score if pain is among the refractory symptoms. If in doubt whether the effect is sufficient, consider increasing the dose.
• If in doubt about medication/doses used, consult readily with a paediatric palliative care team.

• In case of no or little effect of subcutaneous administration of midazolam and/or levomepromazine, consider switching to intravenous administration.