Terminal Agitation

What is terminal agitation?

Terminal agitation, also known as terminal restlessness or terminal delirium, refers to behaviors that can occur in the days leading up to death. When a person nears the end of their life, they may become increasingly restless. They might kick their legs, pick at their bedsheets or pull on their IV line. In some cases, it might seem like their personality changes. They might become uncharacteristically angry or hostile. These are all things that may happen when your loved one’s body begins to shut down.

Witnessing terminal agitation in your loved one can be heartbreaking. The days leading up to their death can feel especially draining — both physically and emotionally. When your loved one becomes restless, disoriented or confused, it can make it difficult to say goodbye in the way you’d hoped. Keep in mind that this agitation doesn’t reflect your loved one’s feelings toward you. It’s a sign of what’s happening inside their body.

A healthcare provider or hospice nurse can ease terminal agitation and keep your loved one as comfortable as possible. They can also tell you what to watch for as your loved one nears the end of their life.

What does terminal agitation look like?

A person with terminal agitation may show sudden, severe symptoms. But in many cases, these behaviors come and go over the last few days of a person’s life.

Physical terminal agitation signs and symptoms may include:

• Frowning or grimacing.
• Grunting or moaning.
• Mumbled speech.
• Pulling on clothes, bedsheets or IV lines.
• Tossing, turning, twitching or fidgeting.

Behavioral terminal agitation signs and symptoms may include:

• Anxiety and depression.
• Combative behavior.
• Confusion.
• Hallucinations.
• Irritability.
• Paranoia.
• Personality changes.
• Uncharacteristic behaviors like cursing or outbursts of anger.

How long does terminal agitation last before death?

Terminal agitation generally occurs within the last two weeks of a person’s life. But it’s different for everyone. Restlessness often occurs with other end-of-life symptoms like mottled skin, lack of appetite or low blood pressure. As death approaches, signs of agitation usually fade. Many people become unresponsive during their final days and hours.

Your hospice nurse or palliative care provider is the best person to ask about timelines. They can tell what signs to watch for, so you have a general idea of what to expect.

What causes terminal agitation?

Physiological changes during the dying process can cause terminal agitation. For example, when your loved one’s kidneys, liver and other organs begin to shut down, waste builds up, resulting in chemical imbalances. This can impact their brain function and make them delirious or agitated.

When your loved one’s heart and lungs begin to shut down, oxygen levels in their body decrease. The loss of oxygen to their brain can make them confused or disoriented. They might hallucinate or talk to people who aren’t there. This can be hard to watch, but these occurrences are all natural parts of the dying process.

Other factors — unrelated to dying itself — can also contribute to terminal restlessness, including:

• Bowel changes. Your loved one may experience changes in the sensations and muscle movements that control peeing and pooping. They may not realize they need to go to the bathroom. This can lead to constipation or urinary retention (when your bladder doesn’t empty). Or it can cause incontinence (inability to control peeing or pooping). These bowel changes can make terminal agitation worse.
• Brain swelling or tumors. These conditions can cause agitation, headaches, drowsiness, confusion, delirium and personality changes.
• Cancer treatments. Agitation is a common side effect of chemotherapy. It’s more common in people who are reaching the end of life.
• Certain medical conditions. This includes a wide range of conditions, from infections and fevers to anemia and dehydration. These conditions all affect brain function and may make terminal agitation symptoms worse.
• Emotional changes. Your loved one may feel many different emotions as they approach the end of life. This can include anxiety, depression, fear or guilt. These emotional changes can result in restlessness.
• Pain medications. Healthcare providers often use opioids during end-of-life care. These medications may increase delirium and cause restlessness.
• Uncontrolled pain. Poor pain management (like incorrect dosage) can lead to discomfort, making your loved one more agitated and restless.

If you think your loved one might benefit from more pain relief, tell their healthcare provider right away. They can evaluate whether they need more medication.

How is terminal agitation treated?

When someone has terminal agitation, the goal is management rather than treatment. Your provider will focus on keeping your loved one as comfortable as possible. This looks different for everyone.

Medical management options include:

• Switching medications or adjusting dosages.
• Treating any underlying conditions that might cause agitation.
• Giving your loved one sedatives or anti-psychotic medications.

In some cases, your loved one may simply need reassurance and comfort. Here are some things you can try to reduce terminal agitation in your loved one:

• Hold their hand.
• Massage their legs and feet with oil or lotion.
• Play calming music.
• Read a book aloud.
• Adjust their position.
• Talk to them in a calm, gentle manner.

Remember, you don’t have to figure everything out on your own. Your hospice nurse or palliative care provider will be there to help. They’ll keep a close eye on your loved one’s symptoms and behaviors. They can often anticipate what your loved one may need in the coming hours and days.

How do I take care of my loved one?

There are many ways you can support your loved one — physically, mentally and emotionally.

• Acknowledge their discomfort. Tell them, “I can see you’re feeling unsettled.” If they’re able to speak, ask them open-ended questions. Ask them to express what they’re feeling.
• Be present. Terminal agitation can be emotionally overwhelming. Hold space for your loved one. They may want to sit in silence. They might have things on their mind they want to talk about. Simply be available while their thoughts ebb and flow.
• Create a safe, comforting environment. Place meaningful objects, like photos or mementos, near your loved one’s bedside. Play calming music. Diffuse essential oils. (Lavender is especially calming.) Watch a familiar “comfort” movie or TV show together.
• Find ways to regulate their temperature. Someone with terminal agitation may feel too hot and then too cold. If they’re too hot, offer them a cool washcloth. If they’re too cold, wrap them in warm blankets. Check their comfort level by feeling their hands and feet.
• Get extra pillows. Frequent repositioning prevents bedsores and may help your loved one feel more comfortable. Use pillows to elevate their head or legs.
• Help them connect spiritually. Many people find comfort in spiritual practices at the end of their life. Play music or read books that align with your loved one’s beliefs. Place any favorite religious books within their reach. Ask if they’d like a visit from a spiritual mentor.
• Keep talking. A dying person may still hear you, even when they’ve stopped responding. Keep talking to them and encourage others to do the same. Tell them you’re there with them. You might even tell them it’s OK for them to go when they’re ready.
• Speak calmly, softly and clearly. No matter how terminal agitation manifests (confusion, anger, hostility), respond calmly and clearly. Your voice can be an anchor, and it can be reassuring for your loved one to hear it.

How do I take care of myself?

When someone has terminal agitation, it can look like they’re in pain. They might moan or scream. They might kick their legs or pull on their clothes. They may not seem like themselves at all. These things can be scary or unsettling to witness. It’s natural to experience a range of emotions that you haven’t yet begun to process.

You need to take care of yourself during this time. It might help to:

• Consider grief counseling. Talking to a counselor can help you process complex emotions.
• Go on regular breaks. Go outside. Take a walk around a park. Do something to clear your mind.
• Join support groups. Find a local or online support group to connect with others who are going through similar things. It can help to know that you’re not alone.
• Lean on other friends or family. Ask if they would be willing to sit with your loved one while you run errands or take care of other tasks.
• Schedule respite care. Many healthcare organizations offer relief for caregivers. Consider respite care when you need some time away to refocus.

Many people fear leaving their loved one’s side for too long. You might even be afraid that they’ll die while you’re gone. These feelings are normal and understandable. But you need to take care of yourself, too. Lean on your palliative care team for support. If you need to take a break, let them know. They know the signs to look for and can call you if anything changes. You don’t have to do this alone.

When should I call my healthcare provider?

Let your palliative care team know if your loved one shows any new signs of agitation or restlessness. If there’s an underlying condition causing it, they can treat it directly. Or they can relieve their symptoms with sedative medications.