End Stage Restlessness and Agitation


The patient may make restless and repetitive motions such as pulling at the bed linen or clothing. The hospice interdisciplinary team assesses and treats physical symptoms that may be the cause of restlessness, such as pain, constipation, urinary retention, and possibly hypoxia. Psychosocial and spiritual suffering could also result in agitation. Denial, unfinished business, fear of death, and unresolved spiritual issues could have as much impact on causing agitation as the physical discomforts. Hospice professionals help identify the physical, psychosocial, and spiritual causes of restlessness and provide the needed support.

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Restlessness in the patient who is actively dying can be very tiring for family members, and they may require increased respite time and volunteer support. Safety measures are instituted, such as 24 hour supervision, and the patient is assessed for signs of discomfort.

This restlessness may also progress to end stage agitation. The patient may be extremely restless and agitated. He/she may moan, groan, vocalize, and experience muscle twitching. According to Peter Kaye in the book, Notes on Symptom Control in Hospice and Palliative Care, “It is difficult to understand why terminal agitation sometimes occurs. It may be due to hypoxia” (1991, p 298). Kaye also notes that some psychosocial professionals have seen a correlation between the patient’s experience of end stage agitation, the denial stage, and issues of unfinished business.

When end stage agitation occurs, patients become extremely agitated hours prior to death. Only a few patients (about 1 to 2 percent) experience these extreme symptoms. (Kaye, 1991, p 297) End stage agitation is not only severely uncomfortable for the patient, but it is also very frightening for the family. Hospice seeks to provide a comfortable, peaceful death. If the patient is close to death and is experiencing agitation, comfort measures should be instituted immediately. Benzodiazepines have been effective in relieving end stage agitation. The hospice nurse collaborates with the physician and pharmacist on medications that would best relieve end stage agitation for each particular patient, as combinations of drugs are often required. Without intervention, these patients may have most unpleasant and distressing deaths and the family may be left with a negative image of the death of their loved one.


Kaye, P. (1997). Symptom Control in Hospice and Palliative Care. Essex, Connecticut: Hospice Education Institute.

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