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.
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.
I read Gone from your Sight trying to find answers to my Mom’s 2 hours of crying a day prior to her passing. As her Caretaker, I was helpless.
Yes, “Gone From My Sight” helped me with the two week long period from diagnosis to death of my Dad, I still pick it up as friends and family pass. A little book with powerful messages. Thank you.
Forty or more years ago, a gentleman with terminal lung cancer was a patient in the hospital where is worked. His wife was his sole attendant and when he began with the delirium it was exhausting for her and frustrating for the staff. The drugs we had at the time were ineffective. Hospice and Palliative Care were nowhere on the horizon. He and his family suffered more than they would have today.
Thank you for your valuable and insightful posts. I am just a volunteer [15 years and counting], I do respite,11th hour doula,and NO one days alone. I started my training with a seminar you gave at SW Washington Medical Center,15 or so years ago. I found that so interesting yet I had even more questions, So,read more of your books, and other hospice books, and took every class I could find about end of life. And, still I hunger for more information. Because of you and your sharing of your experiences, I feel very confidant sitting with the dying, and talking honestly and lovingly with them. I also use your guided imagery to help them relax and let go. I hope,I think, that I have be able to be a caring,honest partner in their journey to the other side. I know that the ones who have honored me with passing in my presence have filled my heart and given me purpose,and always they give me more insight into the dying experience. Sure do miss being able to do this work. Anyway,thank you for for all you do,have done,and stay safe.
I witnessed my baby sister’s extreme terminal delirium and severe motor agitation which was extremely distressing to me. She had Down’s syndrome and Alzheimer’s disease. It was clear she was indeed in danger of hurting herself due to the flailing of her arms and torso rocking back and forth and moaning. It was very difficult advocating for medication at the faculty where she was in spite of being seen a “palliative care” clinician.
Eventually the staff “heard” what I was asking and she did get scheduled medication and by the time she died had many peaceful hours. Thank you Barbara for your important work. It helps to know what to expect. I wish I did before hand.
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