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Terminal Restlessness: This is What's Going On



Terminal restlessness is a common syndrome that may occur near the end of life. People experiencing terminal restlessness show signs of physical, emotional, and/or spiritual restlessness, as well as increased anxiety, agitation, and cognitive decline. This occurs days before death. These signs are more intense than simple mood changes. You would expect anyone with an illness to be depressed or irritable, but these signs can be very troubling for family members and hard to manage.

Although there are many exceptions, the pre-active dying phase, which includes the terminal restlessness, usually lasts up to two weeks and the active dying phase lasts about three days. Some of the signs of the pre-active dying phase include increased restlessness, having to change positions frequently due to being uncomfortable in one position, increased tiredness and periods of sleep, decreased appetite with decreased intake, and edema of the feet, ankles, and legs.

If the patient is experiencing terminal restlessness due to pain or another treatable cause, the doctor will first treat this. If there is no treatable symptom, such as pain, constipation, urinary retention, or other type symptom; the best action to take is to try to calm the individual while always making sure to keep them safe.

Family and caregivers can help their loved one by spending more time with them and providing tangible expressions of love and affection. Stay by their side to keep them from getting up and falling or accidentally hurting themselves. This may include adding side rails to the bed (but, then watch for them to try to climb over the railings). It is important to offer reassurance in a calming voice and provide a calming presence by doing something they enjoy, such as reading favorite stories or prayers. Try playing soothing music or touching them gently, for example, holding the person's hand or a gentle massage. Keep the lights and sounds low. It may also help to have a clock visible to help orientate the patient to time. Having familiar objects nearby, such as photos and ornaments can also be reassuring. In order to maintain a calm environment, it may be helpful to decrease the number of visitors.

Sometimes when a person's agitation can't be relieved by simple measures, medication is required to sedate them. This means using medicines to lower their consciousness so they are calm, or even so they remain asleep. If this is done, it may mean that your loved one is no longer able to eat, drink, or communicate.

A common fear about sedation is that it makes death come more quickly. The truth is, sedation does not hasten death, but it can bring relief from distressing symptoms which will allow for a more peaceful death.


Written By: Care Manager - Dixie Qualls, RN, BSN

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