Terminal Restlessness and Delirium at the End of Life

Common Characteristics

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It's not uncommon for a terminally ill loved one to become unusually restless or even agitated, but it is often distressing for family and friends to witness.

The depth of such restlessness or agitation varies from patient to patient; in some cases, it can progress to a state known as "terminal restlessness," or "terminal delirium." Recognizing the symptoms can help you learn how help a loved one who is experiencing them.

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What Is Delirium?

Delirium is a complex psychiatric syndrome, also sometimes referred to as organic brain syndrome, confusion, encephalopathy or impaired mental status.

You may notice a sudden change in your loved one's alertness and behavior. This change can sometimes fluctuate over the course of a day, and it usually gets worse at night.

Some other characteristics of delirium include:

  • Impaired level of consciousness with reduced awareness of the surrounding environment
  • Impaired short-term memory and attention span
  • Disorientation in time and place
  • Delusions and/or hallucinations (believing and/or seeing things that are not real)
  • Speaking very loudly or softly, rapidly or slowly
  • Mood swings
  • Sleep disturbances, such as insomnia or reversed sleep cycle
  • Increased or decreased body movements that may be very fast or slow

What Is Terminal Restlessness?

Terminal restlessness is a particularly distressing form of delirium that sometimes occurs in dying patients. It is characterized by anguish (spiritual, emotional, or physical), restlessness, anxiety, agitation, and cognitive failure.

Delirium is a common phenomenon at the end of life. Sometimes it can be reversible if the culprit is easy to treat and patient is stable enough (e.g., treating an underlying urinary tract infection that triggered delirium).

However, sometimes delirium is part of the final stages of dying—so-called terminal delirium or terminal restlessness—and it becomes an irreversible process that is often treated symptomatically, with the goal of providing comfort (i.e., sedation) instead of reversing the syndrome.

Terminal restlessness is distressing because it has a direct negative impact on the dying process. Everyone wants death to be a comfortable and peaceful experience, but when someone is dying with terminal restlessness, their death can be anything but.

When someone suffers from a terminal illness, they can become irritable, sullen, frustrated, and angry.

These kinds of mood shifts can be intense, and, when the nearing the end, profound mood changes can occur. This can be particularly difficult for caregivers and loved ones to deal with, causing fear and a feeling of helplessness.

Terminal restlessness has the potential to be confused with a state called nearing death awareness, which is described as a dying person's instinctual knowledge that death is near.

It's important for loved ones and health care professionals to understand the phenomenon of nearing death awareness so they can be equipped to support a dying person's unique needs.

Causes

Delirium and terminal restlessness have many causes. Some causes are easily reversed, while others are not.

Medications are one of the most common causes of delirium, including opioids, anti-seizure drugs, steroids, and anxiolytics. Overuse of medications can cause toxicity and under-use can cause pain and discomfort, all which can further worsen delirium.

Some other common causes include:

What Should You Do?

Multiple factors underlie delirium, and therefore actually reversing the process might be hard to achieve.

For example, dehydration often contributes to delirium at the end of life; however, aggressive hydration with intravenous fluids—intended to treat delirium—can lead to water in the lungs and a whole new set of problems.

If delirium is understood in the context of a patient's last hours to days on earth, then the emphasis needs to be not on treatment of the underlying cause, but rather on decreasing the agitation, hallucinations, and behavioral issues.

This is largely accomplished with sedation or otherwise helping the patient stay comfortable in this stage of their dying process. If you have a hospice team, their extensive experience with this can be tremendously helpful.

Properly identifying the cause of delirium and treating it effectively may take several days, but with the support of the hospice team, close friends, and other family members, it is likely that your loved one will settle down and feel less distressed.

A Word From Verywell

Delirium isn't the same in everyone. It can mimic other illnesses and syndromes, making it difficult to recognize and treat. If you notice your loved one is acting out of sorts, has new memory loss, or is experiencing changes in his sleeping pattern, contact their health care provider.

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  2. Agar M, Bush SH. Delirium at the End of LifeMed Clin North Am. 2020;104(3):491-501. doi:10.1016/j.mcna.2020.01.006

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