Terminal agitation (also known as terminal restlessness or terminal delirium)

note: syringe pump and syringe driver are both relevant terms

Symptoms

May be associated with:

  • Extreme restlessness
  • Fluctuating episodes of cognitive decline
  • Worsening of pre-existing delirium
  • High levels of existential distress.

 

Signs

Can be very variable, but signs can include:

  • restlessness
  • aimlessness
  • fluctuating cognition
  • calling or shouting out
  • fidgeting
  • confusion
  • anguish
  • “plucking”.

 

Management

  • Respond calmly and offer to explain what is happening to family and friends of the person
  • Examine the patient to exclude treatable causes of distress, for example too hot or cold, urinary retention, dry mouth, faecal impaction, itch or rash, poorly controlled pain, drug toxicity
  • Reduce polypharmacy
  • If opioid toxicity suspected reduce dose by 50% and observe
  • Midazolam SC 2mg to 5mg, hourly, as required.

 

Persistent anxiety/distress

First step:

Midazolam SC 10mg to 20mg over 24 hours in a syringe pump + midazolam SC 5mg hourly, as required.

Second step:

Titrate Midazolam with advice starting at 10 mg over 24 hours in a syringe pump.  Doses can be gradually titrated up to 60mg over 24 hours under specialist advice. 

 

  • QTlevomepromazine may need to be used in addition to midazolam under specialist advice.
  • Use lower doses if not used previously and in frail elderly, for example, 2.5mg to 5mg SC as required 2 hourly.
  • Higher doses may be needed for persistent distress or delirium for example, 10mg to 25mg SC as required 2 hourly.
  • May need to be given more frequently initially, for example, hourly to control symptoms.
  • Stop any QThaloperidol.
  • Strongly consider referral to specialist palliative care for ongoing support and advice.