Terminal Agitation

Terminal agitation can happen when a person with cancer is near the end of life. They may become restless, confused, or upset. This can be hard to watch and stressful for loved ones. But the cancer or hospice care team can provide support to the person and their loved ones.

What is terminal agitation?

Terminal agitation is also called terminal restlessness or terminal delirium. It’s a change in behavior that can happen near the end of a person’s life. This is common and usually happens in the last 1 to 2 weeks, especially in the final days. But it can be different for each person.

A person having terminal agitation may seem confused, restless, or upset. They may try to get out of bed, pull at tubes, or speak and act in ways that don’t make sense.

These changes are part of the body slowing down. They are common when a person with cancer is nearing death.

What causes terminal agitation?

There is often more than one cause of terminal agitation. Common causes include problems in the body, such as dehydration, pain, trouble breathing, infections, fever, or side effects from medicines. Changes in the bowels or liver or kidney problems can also be a cause. Sometimes, there is no clear cause.

Certain factors can make terminal agitation more likely. These include general weakness, trouble hearing or seeing, and cancer that affects the brain. They also include certain medicines, such as steroids, opioids, chemotherapy, or those that affect memory and thinking.

Symptoms of terminal agitation

Terminal agitation is not the same for everyone. Common signs include:

• Restlessness, such as fidgeting or trying to get out of bed
• Confusion
• Talking in ways that do not make sense
• Anxiety, fear, or mood changes
• Suspicion or feeling unsafe (paranoia)
• Yelling or other aggressive behavior
• Pulling at clothing, sheets, or medical tubes
• Changes in sleep, such as being awake at night and sleepy during the day
• Seeing things that are not there (hallucinations)

These symptoms can be upsetting for both the person who is dying and their loved ones.

How is it treated?

When a person is experiencing terminal agitation, care focuses on keeping them as calm and comfortable as possible. This may include:

• Giving medicines to ease anxiety, pain, or confusion.
• Changing the dose of current medicines.
• Treating symptoms such as pain or trouble breathing.
• Creating a quiet, soothing environment.

In rare cases, doctors may use palliative sedation. This can also be called terminal sedation or continuous deep sedation. It uses medicine to help the person sleep deeply when symptoms cannot be controlled in other ways.

The cancer or hospice care team will help guide and support the person every step of the way to meet their needs and provide comfort.

What can caregivers and loved ones do?

If someone is experiencing terminal agitation, there are ways to help them feel safe and comfortable:

• Speak calmly and gently.
• Remind them where they are and who is with them.
• Keep the room calm and quiet, and use soft lighting.
• Use gentle music if it helps them feel more relaxed.
• Hold their hand or offer gentle touch.
• Limiting visitors and activity in the room.

Even if the person seems confused, your presence can still help them feel safe.

Caring for yourself

Watching someone you love experience this can be very hard. It’s important to take care of yourself, too. To do this, you might:

Talk to a counselor or join a support group. Grief or emotional counseling can help you process your feelings. Connecting with others in similar situations can help you feel less alone.

Get spiritual support. Spiritual support is different for each person and can help provide a source of strength and comfort.

Take breaks. Step outside, go for a walk, or do something that clears your mind.

Use stress-relief techniques. Listen to music, try mindfulness, or do other calming activities to help manage stress.

Get help from others. Ask friends, family, or respite care services to sit with your loved one so you can rest or take care of tasks.