Restlessness and agitation near the end of life

Call 911 if the person has fallen while trying to get out of bed and may be hurt. Call 911 too if you cannot keep them safe and no hospice team is reachable. If hospice is involved, ring the hospice number first. They can usually come out, or advise you, faster than an emergency department can help.

Call your care team the same day if new confusion, restlessness or hallucinations start. Call the same day if the agitation is getting worse despite the medicine you have been given, or if the person may hurt themselves. NCI's guidance says people near death should be protected from accidents and from hurting themselves when confused. It also says there are drugs that work very well to relieve these symptoms. So make the call early. Do not endure the night.

Families often say the person has "gone strange". They may pluck at the bedding. They may try to climb out of bed. They may talk to people who are not in the room, mix up night and day, or turn suddenly afraid of someone they have known for decades.

NCI's guidance says delirium is common near the end of life. Delirium means sudden confusion. Some people become agitated or have hallucinations, which means seeing or hearing things that are not there. NCI's clinical summary notes that the quiet, withdrawn form is the more usual one. So the loud version is not the only version. A person who is very confused but still and silent is also delirious.

The person is not choosing to act this way. It is not a judgement on the care you have given.

NCI says doctors treat delirium by finding the cause. It names two approaches:

• Giving drugs to fix the level of certain chemicals in the blood.
• Stopping a drug that is causing the delirium, or lowering the dose.

Raise that second one if the change followed a new prescription or a higher dose. It is a real trade-off for the team to weigh. It is not an accusation.

One line in NCI's guidance is the one families most need to hear. There are drugs that work very well to relieve these symptoms.

Agitation near the end of life is a symptom you can treat. It sits in the same box as pain or breathlessness. No household is expected to absorb it through sheer patience.

If the restlessness is not settling, ring the team. That is the answer, not trying harder.

NCI sets the practical priority. People near death should be protected from accidents and from hurting themselves when confused.

At home that usually means plain, unglamorous steps. Clear the floor around the bed. Make sure someone is within earshot. Ask the hospice team about the safest bed setup for someone who keeps trying to get up. Ask first before you improvise anything that holds a person down.

NCI does not suggest arguing with the content of the confusion. What it stresses, all through its guidance on the final days, is contact. Touching and talking to the person may bring comfort even when they do not answer. Most people can still hear after they can no longer speak.

A calm, familiar voice fits that guidance. So does low light, and fewer people in the room at once. So does saying the ordinary reassuring things instead of trying to fix the date in their mind.

NCI's clinical summary notes something about the final days and hours. People often have brief, passing moments of clear thinking. These are not necessarily caused by the medicines being given. They are not a sign the person is getting better.

Families sometimes read a clear hour as a turning point. It is more useful, and kinder to yourself, to take it as an unexpected gift. Do not read it as evidence about what comes next.

Nights spent managing agitation are exhausting and frightening. NCI's summary notes that caregiver distress can be greater than the patient's own. It describes early and constant support of the caregiver as very important. Hospice provides nursing, counselling, home health aide support and respite care. This is exactly the situation those services exist for.