Unstoppable Terminal Delirium In The Dying

QUESTION: What is terminal delirium? I have never witnessed a resident with such a severe case until a few weeks ago. His restlessness was unstoppable until he passed.

The American Family Physician website states: "Delirium is a disturbance of consciousness and cognition with a sudden onset that may be accompanied by increased psychomotor activity. This symptom occurs in 25 to 85 percent of terminally ill patients. Mental status changes can be very distressing to the family, who observe agitation, apparent fear or what they believe to be uncontrolled pain in the patient. Delirium often heralds the end of life and may require active sedation in up to 25 percent of patients.

In non medical words I would call terminal delirium confusion with or without restlessness. In the weeks before death a person who has entered the dying process is sleeping most of the time. You can wake them up and sometimes carry on a conversation but at other times there is just a blank stare. They often begin talking about things that don't make sense to us, seeing people that aren’t there (sometimes people that are already dead), or thinking they are someplace other than where they are. They may be picking the air or their bedclothes. They may have a generalized restlessness about them.

We, the watchers, get concerned about this behavior because it is “not normal”. It is not what people do. This IS what people who are dying do. This is “normal behavior” for dying people.

Why does this happen? We don’t really know. Perhaps it is that because the person is sleeping most of the time their dream world has become their whole world, their reality and they are talking about it. Some have good dreams and some have unpleasant dreams.

Why do we dream? Is our subconscious talking to us? As we approach death fear is in our mind on many levels and I think some of that fear manifests in dreams, confusion, and restlessness.

Decreased circulation and diminished oxygen intake can also cause restlessness and confusion. What we need to remember is that the body is shutting down. Nothing works right. The body is losing its ability to function and maintain itself. The mind is wandering and is not focused. It is withdrawing from this reality. Again, the dream world is their current reality.

What do we do about terminal delirium? Nothing, if it is a gentle agitation and restlessness, a harmless confusion. Medicate, if the agitation is severe enough that the person may fall out of bed or hurt themselves or others.

We need to keep our goal in mind when caring for people at the end of life. It is to allow a gentle, natural death to occur. We know the person can’t be fixed and that death is inevitable. We are not hastening death. We are providing support and comfort to the patient and those present so that this final act of living is a gentle transition.

Something more...

Caregivers, family, loved ones need to have a clear understanding of medicating for end-of-life vs medicating for someone who will get better. Terminal restlessness often calls for medicating. I talk about caring for the dying vs caring for the fixable in my DVD kit, NEW RULES for End of Life Care. You may find many answers there.

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Akilah Ocaña

Thank you for your compassionate work.
I’ve recently cared for a close family member with terminal uterine cancer. The diagnosis came as a shock. Her rapid demise was even more shocking. Less than 30 days from diagnosis and my dear friend was gone.
Hospice was invaluable. Your booklet Gone From My Sight is the perfect addition to all the information provided. I read it and reread it. Sobering indeed.
Thank you so much very much. Your experience and knowledge of the dying process made it less scary for me. For that I’m truly grateful.

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