Recognizing Terminal Restlessness at the End of Life

Terminal restlessness, also called terminal agitation or terminal delirium, occurs in the days leading to death. People may be anxious, agitated, or show signs of cognitive decline. This syndrome has many causes and treatment may not be needed, depending on the individual.

It can be distressing to watch your loved one go through this. You may wonder if there is something you should do about it. If you and your family already know and accept that your loved one is at the end of their life, responding calmly may make the transition a little easier.

This article explains in more detail the changes that terminal restlessness may bring. It offers some insights to help you promote your loved one's comfort during these final days.

Symptoms

Each life and death is unique. The signs and symptoms of terminal restlessness may appear as aggressive behavior. You also may see unusually calm behavior. Emotionally, it's the aggressive often hostile behavior that is more difficult to watch. It also may be harder for you to manage.

Some behaviors are quite common when a loved one has terminal restlessness. The pattern of these symptoms may include:

• Angry or emotional outbursts
• Agitation
• Confusion
• Lack of attention

These behaviors likely stem from discomfort and changes in the body as death approaches, rather than genuine anger or hostility.

Many of the behaviors are similar to those seen in dementia, the decline of mental function often seen in older people. A dying loved one may seem uncomfortable. They may constantly pull at their clothes, bedsheets, and any intravenous (IV) lines.

Others may seem indecisive. They look for items or ask for something, and then turn away from it. They may seem mean-spirited or accuse people of offenses that may or may not make sense.

Sometimes, the restlessness appears briefly and then goes away on its own. A number of other well-recognized end-of-life symptoms also may happen at the same time when a person has terminal restlessness. These may include pulling away from intimacy with others or talking about dead family members.

Causes

There are quite a few likely causes of terminal restlessness. Many of the physical changes that come with the dying process can lead to this type of delirium. Some of these causes may be easy to reverse, while others are not.

The most common causes include:

• Medications: Opioids for pain and drugs given to reduce anxiety often are used for comfort at the end of life. They are known to increase the risk of delirium. If the organs in a dying person's body have started to fail, the effects of drugs that lead to delirium can be increased.
• Cancer treatments: Chemotherapy drugs and steroids are tough on the body. A person who is dying is even more likely to experience the negative effects, including restlessness.
• Poorly managed pain: Often, dying patients can't describe their pain. And even with pain treatment, there is a careful balance that needs to be found. Overuse can lead to toxicity, while under-use allows more pain and discomfort. This makes terminal restlessness worse.
• Organ failure: As organs such as the liver and kidney begin to fail, changes in body metabolism and chemistry may affect how the brain works. Heart and lung failure, which are common in the days before death, lead to lower oxygen levels. All of these effects will add to the terminal restlessness.
• Medical problems: Dehydration, anemia (decreased red blood cells), infections, and fevers are all common when a loved one is dying. They weaken the body and impair brain function, contributing to terminal restlessness.
• Bowel and urinary problems: Urinary retention (the inability to void urine) and constipation are very common near the end of life. This is because the nerve and muscle movements that control these functions are impaired. Pain and severe discomfort may result.
• An emotional response to dying: Often, terminally ill people are aware that they are dying. As death nears, fear, anxiety, and emotional turmoil may arise. This may include restlessness.

Diagnosis

Psychologists will typically describe the stages of dying as denial, anger, bargaining, depression, and acceptance (DABDA). During this time, a person may experience outbursts and irrational behaviors.

The stages of dying are different from terminal restlessness in that these stages begin at the time of the diagnosis. With terminal restlessness, they occur in tandem with end-of-life decline. However, the DABDA stages and the restlessness can occur at the same time.

Terminal restlessness is sometimes confused with nearing death awareness. This is when a person may appear to hallucinate as if having visions or talking with loved ones who are already dead. Each situation is unique, but both can occur at the same time. It may be hard to tell the difference.

Treatment

Terminal restlessness is usually only treated if the behaviors place the person or others at harm. Options include mild tranquilizers called benzodiazepines and anti-psychotic drugs called phenothiazines.

However, it's important to speak up if needed to ensure care for a loved one. A 2023 study of 2,786 terminally ill people found the goals for nearly half of them were not fully met when managing pain and restlessness during their first four hours in the Dutch Care Programme for the Dying Person. During the last four hours before death, 21.9% of the care goals for restlessness were not achieved.

Coping

How a dying person with terminal restlessness behaves is not always consistent with their lifelong personality. Their actions do not always reflect how they feel about you. It's important to remember this, whether they are angry and their actions are hostile, or they are calm and reflecting on memories.

Many emotions can come simply because you know death is near. Your loved one's terminal restlessness may add to your distress because of what they say and do. This may cause you to feel guilty about how you are handling your loved one's dying process.

Caregiving is hard work and often leaves limited time for self-care. But it's important that you do take breaks, so consider a respite care program in your community. You also may want to join a support group for caregivers, where you can ask questions and share your experiences.

Hospice and Professional Caretakers

Some families opt to work with a hospice team because experienced end-of-life professionals can let you know what to expect. They are familiar with what types of interventions are needed. Close friends and other family members also can help you make it through this difficult time, too, but teams of medical professionals, alongside social workers and spiritual caregivers, are important.

Both palliative care and hospice care may be options, but keep in mind that they don't always mean the same thing. Palliative care is focused on reducing pain and protecting quality of life throughout the journey of someone who's terminally ill. Hospice typically is more focused on end-of-life needs.

Summary

The symptoms of terminal restlessness are common when a person is close to death. They may include agitation and aggressive behavior, or even an unusual sense of calm and reflection.

There are many causes of terminal restlessness, such as pain, medications, and emotions about dying. For many people at the end of life, there is more than one cause happening at the same time.

Treatment usually means keeping the person as comfortable as possible. In some cases, mild tranquilizers and anti-psychotic drugs may be used to treat the symptoms of terminal restlessness. Dealing with pain or discomfort as gently as possible, often with help from healthcare providers, can help make the last few days easier for everyone involved.

Most people want death to be a comfortable and peaceful experience. If your loved one is dealing with terminal restlessness, their final days may appear just the opposite.

Some families may be caught off guard by a loved one's terminal restlessness. This can make you wonder if your experience is unusual. It also can make you feel that you are not doing the right things for your loved one. It may help you and your family to know that terminal restlessness is fairly common at the end of life.