When people are getting very close to the end of their life, they may experience aggitation and/or restlessness. This symptom may appear as tossing, turning, fidgeting, or attempting to get out of bed. There are many things that can contribute to this restlessness.
First, assess for urinary retention or uncontrolled pain. A urinary catheter may be necessary, especialy if high doses of opioids are being used, which may contribute to urinary retention.
If these are not obvious sources of the restlessness, I recommend families help address any potential emotional sources of distress. This can be done by using the "five things to say" list:
1. Thank you - acknowledge their accomplishments in life
2. I'm sorry - apologize for anything you've done you may feel regret over
3. I forgive you - let them know you forgive them for anything they may have done that they may feel guilt over
4. I love you
5. Good bye.
The book "Final Gifts" provides wonderful examples of interpretting the emotional sources of distress in confused patients at the end of their lives.
There is some discussion of the use of minimal hydration to help improve restlessness (Fainsinger & Bruera, 1997). The understanding is that the accumulation of metabolites in the body may be the cause for the aggitation and thus some hydration may facilitate the kidney's clearing those toxins. Hydration should be minimal, however, to prevent complications from fluid overload.
Finally, if these interventions are unsuccessful, restlessness may be treated with sedatives:
1. Versed - an anxiolytic sedative with amnesic properties
2. Compazine - commonly used for nausea and vomiting, this drug was originally developed as an anti-psychotic
3. Haldol - particularly useful in confusion/delirium associated with AIDS
4. Phenobarbitone - may be used as an adjunct to the above three if they are insufficient alone
Similar recommendations for the treatment of terminal restlessness may be found in the article "End of life care in patients with malignant disease" by Stone, Rees and Hardy, published in the European Journal of Cancer (issue 37) in 2001.
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I found your blog searching for more help for treating the terminally restless patient and their family. Is there anything already written to help the family in dealing with this. Our facility has a nice notebook for families to read when they are able. A pamphlet on this would be very helpful. Sometimes I feel like patient families think I am making this up when trying to explain terminal restlessness. They may have seen several other deaths and do not expect this? Your explanation seems to cover most bases. I have also noticed many pt see people who have already gone on in the last few days. Have you seen this? One pt crawled off of the foot of the bed. He kept appologising to us for troubling us. He was a kind gentle soul. He saw several people he named. He said the were waving for him to come and go with them and he was in a hurry to get out there. He did not seem disoriented. He apologised several times saying it must have been a dream. His wife said they were all dead. He also spoke much of his first language during the last days. I have seen this also in other pts.
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