Terminal agitation, terminal restlessness or terminal delirium can be upsetting to witness, but the person’s care team can look for possible causes and help to make them more comfortable.

Not everyone who is dying experiences agitation, and not every restless or confused person has terminal agitation. Tell a healthcare professional about any new or worsening change.

What does terminal agitation look like?

Every person is different. Signs may come and go or continue for longer periods. The person may:

• seem unable to settle or find a comfortable position

• fidget, pick at clothing or bedding, or make repeated movements

• call out, shout or speak in a way that is difficult to follow

• try to climb out of bed or pull at tubes or equipment

• seem frightened, anxious, angry or distressed

• not recognise familiar people or know where they are

• see or hear things that other people cannot

Some people are restless without appearing distressed. Others may look frightened or uncomfortable and need prompt help from the care team.

What causes terminal agitation?

Agitation near the end of life can have more than one cause. The care team may check whether the person has:

• pain or another uncomfortable symptom

• a full bladder, constipation or difficulty passing urine

• an infection, fever or changes in the body’s chemical balance

• a dry mouth, hunger, thirst, or skin that is sore or itchy

• side effects from medicines or a medicine that is building up in the body

• too much noise, bright light or unfamiliar activity around them

• emotional, spiritual or psychological distress

Sometimes a cause can be treated or eased. At other times, the agitation is part of the changes happening as the person dies.

Is terminal agitation the same as delirium?

Delirium is a sudden change in attention, awareness and thinking. A person with delirium may be confused, sleepy, agitated, or move between these states. They may also see or hear things that are not there.

When delirium causes distress or restlessness during the final days or hours of life, healthcare professionals may use the terms terminal delirium, terminal agitation or terminal restlessness. The terms can overlap, so ask the care team what they mean in this person’s situation.

For more information on things that can happen when someone is dying, read our Support Hub article: Seeing or hearing things when someone is dying.

How can I help them feel calmer?

If the person is safe, stay calm and respond to how they seem to feel rather than trying to correct everything they say. You could:

• speak slowly and gently, using short, reassuring sentences

• remind them who you are and let them know they are not alone

• reduce background noise, bright lights and the number of people talking

• play familiar music or keep familiar photographs or objects nearby

• hold their hand if they usually find touch comforting

• ask whether they need mouth care, a change of position or help with the toilet

Don’t physically restrain them or try to manage unsafe movements by yourself. Ask the care team for help.

What can the care team do?

A doctor or nurse can assess the person, look for causes that may be treatable and review their medicines. They may suggest mouth care, changing the person’s position, helping them pass urine or open their bowels, or making the room calmer.

If the person remains distressed, medication may be offered to relieve agitation or anxiety. The choice and dose should be based on the person’s needs and reviewed according to how they respond.

Will medication make them unconscious or speed up dying?

The purpose of medication is to relieve distress, not to speed up death. Some medicines used for agitation can make a person sleepier. The illness and the natural process of dying can also cause increasing drowsiness.

Ask the doctor or nurse what is being given, what effect they expect and what they will monitor. If you are worried that the person has become much sleepier after medicine, tell the care team.

For more information on medication, read our Support Hub article: What are ‘just in case’ medications?

When should I ask for help?

Contact the nurse, doctor or palliative care team if the person becomes newly restless or confused, seems frightened or in pain, repeatedly tries to get out of bed, or may hurt themselves by pulling at equipment.

If the person is at home, use the contact number provided by their GP, community nursing, hospice or palliative care team. Ask in advance who to call during the day and out of hours.

It can be upsetting for you too

Watching someone you care about become agitated or fail to recognise you can be distressing. Their confusion does not mean that their feelings about you have changed, and the agitation is not your fault.

Take turns with someone else if you can, and tell the care team if you are frightened, exhausted or finding it difficult to cope. You are not expected to manage terminal agitation alone.