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.
11 comments
Thank you for all you do.
I have been a Hospice Volunteer for six+ years and I had a patient that wanted to die because his wife had just passed but hung in there. I got there one day and he worked in a steel mill way back in the day and this day he talked about guys climbing and falling and all the tragedies and dying in a steel mill. For my second hospice patient WHEW !!! I wish I had known more but I realized something was happening at that time, just didn’t know what. I always wanted to share this Thanks
As a hospice nurse I have seen “Terminal Agitation” many times. I believe that control of Anxiety/Agitation is just as important as controlling pain. Keeping the symptoms of approaching end-of-life controlled allows your loved one to transition and cross over to what comes next easier and more peacefully.
Usually benzodiazepines like Ativan or Xanax are effective when given routinely. Effective frequency and dosage can sometimes takes a little while to determine.
In severe cases ABHR (Ativan, Benadryl, Haldol and Reglan) has been effective. This topical medication needs to be compounded by a pharmacy and is rubbed into the skin.
I’m writing this strictly for informational purposes so readers who are not not aware can become better advocates for their loved ones. All decisions regarding medications and possible side effects still need to be discussed with the hospice doctor and team.
Hi Faye, you asked why your husband said “I did not know you were married” while he was in the ICU. You also said he was saying “crazy” things. I think when we are very ill, when we are not aware of our surroundings, talking but not making sense, our mind is dreaming. Everything is like a dream and most dreams don’t make sense. I think when your husband opened his eyes, looked at you, and said he didn’t know you were married he was having a dream. He didn’t know who you were. It was all part of his dream. I don’t think it had anything to do with you. You had 42 years of a good marriage and good memories. Don’t let a minute of illness induced chatter put a shadow on those memories.Blessings! Barbara
I was not at the Hospice room when my husband passed and have no idea what his final breath entailed. Need to speak to nurse who was with him, but have not.
Please respond with this one thing that is really bothering me when he was in ICU, we had been married 42 yrs, second time wonderful beautiful, loving Christian marriage. He was semi-comatose, but speaking crazy stuff. He rose up off his pillow once looked at me with the coldest, hard eyes I have ever seen and said “I DID NOT know you were married!!” I explained to me calmly that I had been married to him for 42 yrs, was single 6 yrs before we met, and yes before our marriage we both had been married and each had children whom we raised together. He fell back on his pillow and closed his eyes. That has been a constant ongoing emotional heartfelt hurt for me. Can you explain why he said that, looked like he had been talking to someone in the air, then turned to me and said that. Thanks Faye
Hi Cora, I know it is such a feeling of helplessness while we watch our loved one work to get out of the body. We just don’t know what is going on inside. Think of the little chick working to get out of it’s shell. We also work to get out of our body, that work can show itself in agitation, random movements, murmuring, and crying. I know it was hard to watch but nothing bad was happening. Blessings to you. Barbara
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