Terminal Restlessness and Delirium at the End of Life

Delirium is a fairly common symptom in many dying patients, and you may be the first one to notice that your loved one is experiencing some of its effects, especially a state called terminal restlessness. How might you recognize it?

Delirium is a complex psychiatric syndrome, also sometimes referred to as "organic brain syndrome," "confusion," "encephalopathy" or "impaired mental status." You may recognize it by noticing 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 a reduced awareness of the surrounding environment
• impaired short-term memory and attention span
• disorientation to time and place
• delusions and/or hallucinations (believing and/or seeing things that are not real)
• uncharacteristic speech: may be very loud or soft, rapid or slow
• fluctuating mood swings
• sleep disturbances: insomnia or reversed sleep cycle
• abnormal activity: body movements may increase or decrease, and may be very fast or slow

If treatment is delayed or proves very difficult, delirium may progress to 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.

Terminal restlessness is so distressing because it has a direct negative impact on the dying process. We all want death to be a comfortable and peaceful experience but, if a patient is dying with terminal restlessness, her death can be anything but.

When a person becomes ill, mood changes are often a common symptom. Irritability, sullenness, frustration and even anger are moods that may be exhibited. When a person suffers from a terminal illness, 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.

Terminal restlessness is so distressing because it has a direct negative impact on the dying process. We all want death to be a comfortable and peaceful experience but, if a patient is dying with terminal restlessness, her death can be anything but.

Terminal restlessness has the potential to be confused with "nearing death awareness," which is described as a dying person's instinctual knowledge that death is near. It's important for loved ones of dying patients, as well as health care professionals, to understand the phenomenon of nearing death awareness so they can be equipped to support a dying patient's unique needs.

There are many different causes of delirium and terminal restlessness. Some causes are easily reversed, while others are not.

Some of the most common causes of delirium include:

• medications: opioids, anti-seizure drugs, steroids, and anxiolytics are just a few of the medications that can cause delirium. Overuse of medications can cause toxicity and under-use can cause pain and discomfort, which can further worsen delirium.
• untreated physical pain or discomfort
• dehydration
• decreased oxygen in the blood/brain
• anemia (decreased red blood cells)
• infections and fevers
• brain tumors/brain swelling
• urinary retention (the inability to void urine could be caused by disease, a kinked urinary catheter, or bladder spasms)
• constipation or fecal impaction
• fear, anxiety, emotional turmoil
• cancer treatments
• metabolic disturbances (common at the end of life as vital organs begin to shut down)

If the cause is easily identified, delirium is usually treated easily. However, at the end of life, it may prove difficult to identify one cause, therefore making the treatment of delirium and terminal restlessness challenging.

It's important to keep in mind that 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, you will make it through this difficult time.

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