What is terminal agitation and what does hospice do?

What does terminal agitation look like?

The person who slept peacefully yesterday pulls at the blanket, tries to climb out of bed, reaches for things in the air or calls out. They may not know where they are or who is with them. They may talk to a parent who died years ago, or seem to see someone standing in the corner. The National Institute on Aging describes this as mental confusion and unusual behavior near death, and it is one of the hardest changes for a family to watch, because it looks like distress even when it is not.

Not everyone has it. Many people simply sleep more and more until they die. When it comes, it is usually in the last days, and it can come and go.

What is behind it, and what the team does

The nurse's first job is to tell normal end-of-life restlessness from restlessness with a cause.

The nurse may find more than one cause, or none. Restlessness that is new, severe or hard to settle is a reason to call.

What helps at home

The National Institute on Aging and hospice nurses give the same advice.

• Keep the room calm: soft light, low voices, music at a low volume, fewer people at a time.
• Provide physical contact. Hold a hand, or give a gentle hand or foot massage.
• Talk to, not about, the person. Say who you are when you come into the room.
• If they see or talk to someone who is not there, do not correct them or say they are imagining things. Give them the space to experience their own reality.
• Do not restrain the person or argue them back into bed. Lower the bed, pad the floor if needed, and stay close.
• Tell the nurse what you see, when it started and what came before it. That is how a cause is found.

What medicines does hospice use?

When restlessness does not settle after the cause is treated, the hospice doctor may order a calming medicine for anxiety, agitation or restlessness. The comfort kit in the home holds the medicines used in the last days, and the nurse tells you which one to give and when. The aim is a person who is settled, not sedated. Read hospice medications: what each one is for and the comfort kit.

If agitation is severe and cannot be managed with the usual visits, the hospice can provide a higher level of care for a short time, when medically necessary during a symptom crisis. Severe agitation is one of the examples Medicare's rules describe. See the four levels of hospice care.

Common questions

Read more

This page is part of signs that death is near. The other pages in the series: the death rattle, how long someone can live after they stop eating and drinking and transitioning and active dying. For restlessness in dementia, see hospice for dementia.