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

May be associated with:

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

Can be very variable, but signs can include:

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

• 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.