Terminal restlessness

Definition

Agitation, motor restlessness, picking at bedclothes, moaning, or distress in the final days/hours of life
Substantial overlap with hyperactive terminal delirium - in practice the two are managed with the same framework, and the terms are often used interchangeably
A leading cause of family distress in the dying phase

Common in the final 24-48 hours of life, paralleling the high incidence of terminal delirium in this window

Same broad causes as terminal delirium: urinary retention, faecal impaction, uncontrolled pain, opioid toxicity, hypoxia, biochemical derangement (hypercalcaemia, uraemia), primary/secondary brain disease
Existential/spiritual distress and unresolved psychosocial issues can present as physical restlessness ("terminal anguish") - not every case has an organic driver alone
Withdrawal states (opioid, benzodiazepine, nicotine, alcohol) if regular intake abruptly stops as oral route is lost - easily overlooked

Clinical assessment as for delirium - but always screen the specific reversible list before attributing restlessness to "dying" alone:
- Bladder scan (retention), PR exam (impaction), pain assessment, medication/withdrawal review, hypoxia
Consider a psychological/spiritual/existential contribution, especially if restlessness does not fit a clear organic pattern
Distinguish from normal peaceful decline - restlessness is not an inevitable part of dying and warrants assessment, not automatic sedation

Catheterise if retention, disimpact if indicated, treat pain, review/rotate opioids, correct reversible metabolic causes if consistent with goals of care
Consider and address spiritual/existential/psychosocial distress directly - chaplaincy/pastoral care, family reconciliation, addressing unfinished business

Calm environment, familiar voices/presence, gentle reorientation, reduce unnecessary stimuli/interventions

Benzodiazepines (e.g. midazolam subcutaneously) are often used first where sedation itself is an acceptable/desired goal for refractory agitation
Antipsychotics (haloperidol) if hallucinations/delusions prominent - evidence for benefit is weak, and trial evidence shows harm in mild-moderate terminal delirium, so titrate to symptom relief rather than expecting resolution
Refractory distress despite optimised measures -> palliative sedation per local policy, with explicit discussion of intent (comfort) and consent processes

Falls and injury
Overlaps substantially with terminal delirium - manage using the same reversible-cause checklist
Family distress, moral distress in staff

Often heralds the final hours to days of life
Can resolve with treatment of a specific reversible cause (e.g. catheterisation for retention) - always look before assuming it is purely part of dying
Where no reversible cause is found, focus shifts entirely to comfort-oriented symptomatic management

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