Situations

Terminal restlessness: signs and what helps

It's quite common for people to be restless or confused in their last few days. Sometimes there is a reason, such as needing to pass urine or being uncomfortable, and sometimes there is no clear cause. Simple things often help, and the care team can check for causes and give medicines that ease distress. (NHS inform, NHS)

Signposting, not medical adviceSources checked 28 September 2026

What are the signs?

The person may want to move about even though they cannot get out of bed, or they may shout or lash out. This can be out of character and distressing for family and carers. (NHS)

They may seem confused and not recognise familiar faces. They may see or hear people or things that are not there. (NHS inform)

What causes it?

Sometimes there is a clear reason, such as needing to pass urine or move the bowels, or being hot or uncomfortable. But there might not be a clear cause. (NHS inform)

Medicines or changes in the chemical balance of the brain can cause confusion or hallucinations. It can also happen because the person is drifting in and out of sleep and is less aware of what is real. (NHS, NHS inform)

People with conditions affecting the brain, such as dementia or some types of cancer, are more likely to be restless or confused when they are dying. (NHS inform)

What can help

  • Have no more than one or two familiar people sitting with them, and avoid too many visitors. (NHS inform)
  • Remind them who you are, as often as you need to. (NHS inform)
  • Keep their surroundings calm and familiar, with photos or favourite things nearby. (NHS inform)
  • Remind them of the day and time, dim the lights at night, and keep regular routines through the day. (NHS inform)
  • Help them to wear their glasses and hearing aids. (NHS inform)
  • If they say things that are not true, reassure them and let them know they're safe. (NHS inform)

When to ask for help

Talk to their doctor or nurse, or contact them, if the person is distressed and not settling. They can check for a treatable reason. (NHS inform)

The medical team can rule out or treat causes such as pain, breathing problems or infection. If no cause is found, there are medicines that can ease distress. (NHS)

If you need help now

If someone's life is in danger, call 999. If you need medical help urgently and are not sure what to do, call 111 (NHS 111 in England and Wales, NHS 24 in Scotland). In Northern Ireland, nidirect explains where to get urgent help.

If someone has just died
If the death was expected, at home
Contact their GP. If community nurses have been visiting, call them too: they can verify the death. Outside surgery hours, contact the on-call doctor.
If the death was unexpected
Call 999 straight away and explain what has happened. The police will also be told, because the coroner needs to know.

Sources: NHS: when to call 999 · NHS: when to use 111 · Sussex Community NHS Foundation Trust · nidirect: when someone dies at home

Sources

Further reading from the library

616.029guide

What to expect from end of life care

Find out what to expect from end of life care, wherever you're being cared for, including the 5 priorities for care and who to speak to if you’re concerned.

NHSofficialEnglandVerified 27 Sept 2026
616.029organisation

Marie Curie: End of life

Index page: all of Marie Curie's guidance on the end of life. Understanding what to expect at the end of life and knowing how to get support can help you, and people caring for you, feel more prepared for this time.

Marie CuriecharityUKVerified 27 Sept 2026
616.029organisation

Red Tent Doulas — End of Life Doula Services

A UK practitioner-led organisation offering end of life doula services and information. Provides a useful description of the doula role in the context of home death, vigiling, and practical family support — useful as a reference for explaining the role to clients.

Red Tent Doulas
616.831guide

Age UK — Caring for Someone with Dementia

Comprehensive information for family carers supporting a loved one with dementia, including as the condition reaches end of life. Covers practical care, legal planning, respite services, and emotional support for carers.

Age UK