Terminal Agitation

Restlessness at End of Life

“The important thing is that you are there, providing reassurance and support.  The value of a life fully lived and of care lovingly provided should not be diminished by the ways the body lets go of life.”

As end of life nears, some people might experience restlessness, which is also referred to as Terminal Agitation. The behaviors and actions associated with restlessness can be surprising or even frightening, when a usually calm person becomes restless or agitated. The extent of this restlessness can vary greatly and include many different behaviors.

Sometimes patients with restlessness experience delirium. This means they may not be thinking clearly and may have less awareness or reduced attention with what is happening around them.

  • Patients may be very weak and insist on changing positions often.
  • They may yell out and show anger toward people around them.
  • Some show fear and may want to go to seek help because they believe someone unseen is trying to hurt them.
  • They may not recognize familiar people or seem to be living in the past.

Other changes to watch for:

  • Aimless movements such as picking at the sheets or clothing, looking disturbed, frowning, grunting, looking surprised or afraid.
  • Changes in speech.
  • Irritability or agitation, mood swings or difficulty focusing.
  • Changes in alertness, difficulty in sleeping or not being aware of surroundings.
  • Increased or changing confusion, poor memory or short attention span.
  • Not recognizing family and friends. Not knowing where he or she is.
  • Appearing to see, hear or feel things that aren’t there. Motioning or calling out to people who aren’t there.
  • Crying out for help. Not being able to tell you what’s wrong. Using profanity, undressing, trying to get out of bed or out of the room.

This experience can be difficult for everyone involved, even for professionals. You may feel helpless to know what the patient is trying to say or don’t know how to help them. The situation feels out of control.

We can’t always know the cause of restlessness. Many changes occur when a person is nearing death. Body organs fail and waste may build up in the person’s system, causing confusion and behavioral changes. Pain can be the cause of restlessness and so can infection, fever or brain injury. Some cancer treatments also cause symptoms. Emotional upset or fear can contribute to restlessness as well.

Restlessness, like pain, is best treated early. If you see changes in the patient’s mood, behavior or ability to sleep at night, report it to your nurse. Sometimes symptoms can be improved with use of medications and changes in the environment. If the cause of restlessness can be identified in a patient, the hospice team will work to treat the cause and to do everything possible to make our patient more comfortable.

There are many treatments available for restlessness. Our nurse will assess the situation and the patient to find the most likely cause. The nurse may try several different approaches to determine which treatment will be most effective. In the meantime, be a calming and reassuring presence for the patient.

Part of being human is wanting to make sense of things, but this can be difficult in the case of restlessness. You may look for messages in confused words, try to find meaning in the words or actions of the patient. What you see and hear is not necessarily a message, just the body letting go.

It is important to understand that sometimes, no matter what we do, the dying process for a loved one is not as peaceful as we had hoped. Our team is here to help you during these difficult times.

First, know that sudden changes like these will make anyone feel anxious and upset. There are several things you can do:

  • Stay calm. If you are anxious, it can affect the patient’s behavior.
  • Contact the hospice nurse. Early assessment and treatment are important.
  • Quietly keep the person safe.
  • Gently remind them who you are and what you are going to do. “Mother, it’s Betty. I’m right here with you, and I am going to straighten the covers for you.”
  • Don’t ask questions, just reassure.
  • Do whatever feels calming and appropriate. Gently wipe their face with a warm cloth, play their favorite music, quietly sing or hum familiar songs, or simply hold their hand.
  • Try to keep the usual routine in place.
  • Provide a quiet, peaceful setting.
  • Keep low lights on at night.
Hospice of Washington County is available 24 hours a day!
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