Agitation in palliative care
Please be aware - this information is for healthcare professionals.
You can use our My Learning form to reflect on how this page has helped with your continuing professional development.
Some people become agitated towards the end of their life. There are a number of different causes, and it can often be recognised by restlessness, fidgeting and changes to a patient’s behaviour. Agitation can be distressing for the patient, their carers, family or friends, but there are things you can do to support them.
On this page:
Terminal agitation
Agitation is a term that describes anxious, restless and unsettled behaviour. It can be linked to emotional, physical or spiritual distress. Terminal agitation means agitation that occurs in the last few days of life.
You might also hear terminal agitation being described as terminal restlessness, terminal anguish, confusion at the end of life, or terminal delirium. These terms all have different meanings but they do overlap.
Agitation is often a symptom of delirium but some patients can become agitated without delirium. Read more about delirium.
Signs of agitation
Agitation can come on suddenly or gradually, and often it comes and goes. Signs and symptoms of terminal agitation can include:
- distressed behaviour
- not being able to get settled
- confusion
- calling out, moaning, shouting or screaming
- hallucinations
- trying to get out of bed or wandering
- being sleepy during the day but active at night
- becoming harder to rouse from sleep
- being unable to concentrate or relax, or getting easily distracted
- rambling conversation or switching topics often
- sometimes angry and aggressive behaviour
- facial cues, like frowning, grimacing, and looking less peaceful
- fidgeting, including repeatedly picking at clothes or bed sheets.
These changes can be very distressing for the patient and their carers, family or friends.
There’s more information on how to help a patient and those around them below.
Causes of agitation
Agitation can be a sign that the person is in the last days of life but it can also occur in earlier stages of their illness.
Terminal agitation happens to people who are in the advanced stages of their illness.
Find out about the other signs that someone is in the last days of life.
Agitation can be caused by medications the patient is on, their condition, or psychological factors. Causes include:
• medication, such as opioids or corticosteroids
• alcohol intoxication or alcohol withdrawal
• nicotine withdrawal
• uncontrolled pain or discomfort
• urinary retention (when a patient can’t empty all the urine from their bladder)
• constipation
• nausea
• a brain tumour, including metastases or swelling in the brain (cerebral oedema)
• infection or sepsis
• organ failure
• altered blood levels including urea and creatinine, calcium, sodium, glucose
• oxygen deficiency (hypoxia)
• emotional or spiritual distress
• pre-existing mental disorders.
Assessing a patient with agitation
When trying to diagnose the cause of a patient’s agitation, it’s important to gather information about the patient, including if anything new has happened which might have caused their agitation, like starting a new medication.
You can speak to the patient, their family (if the patient gives consent), and professionals involved in the patient’s care.
There are a number of things you can consider:
- How long have they been agitated?
- Did it come on gradually or suddenly?
- Is the patient’s behaviour different to normal, and in what ways?
- Has anything changed in their treatment or medication?
- Has anything changed in their environment?
- Could the patient have a full bladder or faecal impaction (when stool has built up in the rectum)?
- Do you they have uncontrolled pain or other symptoms, like nausea?
- Are there signs of alcohol or other substance withdrawal?
Supporting someone with agitation
Agitation is not an inevitable part of the dying process. If a patient is agitated at the end of life, it’s important to try to manage it.
Patients who are agitated may struggle to communicate how they are feeling. They may be extremely fatigued or confused. It’s important to check their symptoms, check if there are any reversible causes of their agitation, and try to communicate with them where possible. Use moments when they’re calmer and less agitated to speak to them.
Don’t dismiss what someone is experiencing when they have terminal agitation. You can support them by saying something like: “I can see that you are feeling unsettled”. Ask open questions, and encourage them to express what they’re thinking and feeling. Speak clearly and calmly.
Sometimes, simple methods can help to reduce agitation and distress. Find out what the patient finds comforting and reassuring. This might include repositioning them, playing music, talking in a gentle and reassuring way, and touching them gently, for example holding their hand.
Try to provide a calm and safe environment that suits the patient’s needs. You could make sure a clock is visible to help orientate the patient in time. Having familiar objects nearby, such as photos and ornaments can also be reassuring.
Sometimes agitation can be caused by emotional distress. Read about how to support patients with emotional distress.
Read more about caring for patients who are in their last hours or days of life.
Supporting those around the patient
Agitation can be distressing for those around the patient, including family, friends, and other health professionals. Here are some things you can do to support them:
- Explain what agitation is and talk to them about what could be causing the patient’s agitation. Try to avoid using jargon. You could share our information for patients, family and friends about end of life symptoms and what to expect in the last weeks and days.
- Explain what is being done to manage the patient’s agitation.
- Make sure they know they can ask you questions and speak to you about any worries or concerns.
- Encourage them to use the techniques above to help reduce the patient’s agitation and distress.
Read more about how to provide emotional care.
Getting support for yourself
Caring for someone with agitation can be very distressing. It’s important to be aware of how you are feeling and seek support if you need it.
Talking to your manager or other colleagues about how you’re feeling can be helpful. If you feel you need extra support, you could consider seeing a counsellor or psychologist.
Sedation and agitation
Sometimes when a person’s agitation can’t be relieved by other measures, medication is needed to sedate them. Sedation means using medicines to lower a person’s consciousness so that they are calm, or even asleep.
The patient will commonly be started on a small dose of sedative (such as a benzodiazepine like midazolam or lorazepam). They may also be given an anti-psychotic (such as haloperidol). Medicines are usually given as injections or through a syringe pump (also known as a syringe driver).
Read more about syringe drivers.
There are many ethical issues to consider when making a decision about sedation. The person may no longer be able to eat, drink or communicate if they are sedated. The patient’s medical team, the patient themselves, and their close family or friends should be involved in the discussion.
A common worry about sedation is that it makes death come more quickly. Sedation does not make death come more quickly, but it can bring relief from distressing symptoms and allow a more peaceful death. It is important to discuss this with the patient, and their carer, family or friends, and address their concerns and worries.
When to ask for help
Speak to the patient's medical team or let your manager know if the patient is agitated or restless. They may use medication to relieve agitation. They might also be able to identify a reversible cause and give the appropriate treatment.
Agitation can be very distressing for the patient - if you can’t resolve their agitation, it should be treated as an emergency. If it’s out of hours and you are concerned about the patient’s agitation, contact the out of hours GP or rapid response service for your area.
Useful resources
Scottish Palliative Care Guidelines: Severe uncontrolled distress
Key points
- Terminal agitation is anxious, restless or distressed behaviour that can occur at the end of life.
- Agitation is not an inevitable part of dying and may need to be treated as an emergency.
- There are many potential causes of agitation and many of them can be reversed.
- Try non-drug methods to relieve agitation first.
- Let the patient’s medical team know quickly as they may be able to find and treat a reversible cause.
- If the patient requires sedation, try to address any concerns that they or their family and friends might have.
Marie Curie Nurse Maria describes the common changes that you might notice in someone's last weeks, days and hours of life. Peter, Shital and Tracey also talk about their personal experiences of looking after their loved ones during this time. If you're caring for someone who is dying, you might find that there are some things you can relate to. But you might find that you don't notice these changes or that you notice them at different times – everyone's experience is different.
Update: In this video, we talk about skin changes (4:26). Our information has since been updated as follows: People with lighter skin tones might look slightly blue, or their skin can become mottled (have different coloured blotches or patches). On people with darker skin tones, blue can be hard to see. It may be easier to see on their lips, nose, cheeks, ears, tongue, or the inside of their mouth. Mottling is also harder to see on darker skin tones – it might look darker than normal, purple or brownish in colour.
Did you find this page useful?
Help us be there for anyone with an illness they're likely to die from by telling us what you think.
If you are completing this survey using a desktop computer, hold down the Ctrl button to select multiple options.
Let us know what you think
Email your feedback to knowledgezone@mariecurie.org.uk
Disclaimer
This information is not intended to replace any training, national or local guidelines, or advice from other health or social care professionals.
The Palliative Care Knowledge Zone is not intended for use by people living with a terminal illness or their family and friends, who should access our information for the public.
