Our team at Smoky Mountain Hospice is here to help.  Your loved one on Hospice may experience what is known as “Terminal Agitation” or “Terminal Restlessness” as end of life approaches.  Not all patients will experience this- but we want you to understand what it is and how we can work together to deal with it if/when it occurs.
It is best to be prepared and ready to intervene earlier rather than later whenever Terminal Agitation is encountered. It typically occurs in the days or hours before death.  You may feel frustrated, helpless and worried; at a loss as to what to do.  You might feel offended by your loved one’s new behaviors and their harsh words. You ask yourself ‘What does this mean? How can I make my loved one settle down and rest?” Remember that  access to a Hospice Nurse is a phone call away.  The Smoky Mountain Hospice Nurse is highly experienced and trained to deal with your loved one’s unique needs.

An elderly woman with her head in her hands, overwhelmed by emotion.WHAT IS TERMINAL AGITATION?

This is when your loved one begins exhibiting uncharacteristic changes that are sudden, intense in nature and unexpected.   They may appear agitated, restless, confused; doing and saying things that make it obvious that this is now a different and difficult situation for both you and your loved one.  Terminal Agitation/Restlessness can manifest in the following specific ways:

PHYSICAL SIGNS

  • Staying in constant motion
  • Fidgeting, jerking, twitching
  • Tossing back and forth in bed or squirming
  • Trying to climb out of bed, try and get up and walk, pacing
  • Picking at clothes, sheets, blankets, reaching in the air
  • Grimacing, furrowed brow, frowning
  • Moaning, grunting, crying or calling out
  • Can’t sleep, restless sleep

Elderly woman with clenched fist, exhibiting signs of agitation.BEHAVIORAL SIGNS

  • Hallucinating, talking to people not there, even the deceased
  • Not recognizing you or where they are
  • Mood swings, personality changes
  • Paranoid, angry or suspicious
  • New confusion, distress, short attention span
  • Irritable, demanding
  • Uncharacteristic cursing, hostile words
  • Resists care, combative, lashing out physically
  • Mumbled or nonsensical speech
  • Undressing

SOME POSSIBLE CAUSES OF TERMINAL RESTLESSNESS

  • Organ and body system failures related to dying process; low blood oxygen level, chemical and electrolyte imbalance (high calcium levels), anemia
  • Constipation, urinary retention or dehydration
  • Poorly managed pain
  • Missed medication doses
  • Medication related; opioids, chemotherapy, steroids, anti-seizure meds
  • Fever which may signal an infection (urinary tract infection)
  • Nicotine or alcohol withdrawal at end of life
  • Emotional and spiritual distress; fear of death, anger, anxiety, guilt, unfinished business, unresolved issues, family discord. (These issues may be referred to as Terminal Anguish- and are best addressed before closing days of life)

WHAT YOU CAN DO ABOUT IT

  • Contact your Hospice Nurse; early intervention is best
  • Do not became agitated yourself, your behavior affects your loved one
  • Make any adjustments to the environment needed to assure safety
  • Provide calm atmosphere; adjust lighting, room temperature, add or turn off music, remove noisy distractions
  • Address physical discomfort; check bed for obstacles and bunched up sheets, reposition your loved one, move the pillows, adjust the urinary catheter
  • Limit the people in the room to 1-2 cooperative and calm people
  • Be ‘present’ with a calming demeanor and voice; touch, hold their hand
  • Speak only in reassuring ways; don’t ask questions, argue or correct
  • Gently remind your loved one of who you are and what your are going to do

Hospice nurse providing care and comfort to an elderly patient at Smoky Mountain Home Health and Hospice.WHAT YOUR NURSE WILL DO

They will return your call and/or come to your bedside to assess the situation with an eye towards making your loved one more comfortable and able to rest. Strategies may include addressing anxiety and pain control, overall medication management adjustments; and suggesting changes in the patient’s physical environment.  They also have access to Chaplain and Social Worker support for spiritual or family related issues that may be contributing to the Terminal Agitation.  Don’t overlook your own need for the comfort and reassurance a Chaplain or Social Worker can provide.

WHAT TO REPORT WHEN YOUR HOSPICE NURSE RESPONDS

  • The signs of agitation that your loved one is exhibiting
  • When the signs and behaviors began
  • What you have done thus far to try and help
  • Any safety or fall concerns you may have
  • What medications have been taken, any new meds, missed meds, etc.
  • What, if anything, your loved one is saying
  • Signs of pain noted such as grimacing, frowning, furrowing brow
  • When your loved one last urinated or had a bowel movement; any foul odor and/or color change noted with the urine
  • If there is a fever; provide the temperature
  • If the patient is using oxygen, then at what liter flow; oxygen saturation reading if you have access to a pulse oximeter.
  • If you suspect that emotional, spiritual or family distress might be a contributing factor

Two people holding hands, one lying in a hospital bed and the other sitting beside them, offering comfort.HOW SUCCESSFUL WILL CONTROL OF TERMINAL RESTLESSNESS BE?

Your Hospice Nurse may try several strategies to alleviate your loved ones restless distress.  The chosen initial strategies may need to be adjusted.  If a new medication is ordered- obtain it and get it started right away.  It is very important to keep your Hospice Nurse informed of your loved one’s response to the strategies that are implemented and/or adjusted.  Most of the time Terminal Restlessness can be eliminated or at least managed to a significant degree.  Keep the lines of communication open between you and your Hospice Nurse.

YOUR OWN RESPONSE TO THIS END OF LIFE RESTLESSNESS

Unexpected behaviors and words can have an effect on you as the caregiver.  It is important to realize that dying people are in the process of ‘letting go.’  They are affected by the body shutting down and manifestations of this vary from person to person. They are not in control when in an agitated/restless state – things you may hear your loved one say should be viewed in that context.  Disjointed phrases, confused sentences, angry outbursts, use of language the person would not otherwise ever use is often an integral part of this terminal restlessness.  Don’t take it personal – take it as part of the process.  Again, your Smoky Mountain Hospice Nurse will work to bring calm and rest to your loved one…and to you too.  Feel free to share your feelings, fears and sadness with members of our team.  We are here to journey with you during this difficult time.

An elderly woman with her head in her hands, overwhelmed by emotion.WHAT IS TERMINAL AGITATION?

This is when your loved one begins exhibiting uncharacteristic changes that are sudden, intense in nature and unexpected. They may appear agitated, restless, confused; doing and saying things that make it obvious that this is now a different and difficult situation for both you and your loved one. Terminal Agitation/Restlessness can manifest in the following specific ways:

PHYSICAL SIGNS

  • Staying in constant motion
  • Fidgeting, jerking, twitching
  • Tossing back and forth in bed or squirming
  • Trying to climb out of bed, try and get up and walk, pacing
  • Picking at clothes, sheets, blankets, reaching in the air
  • Grimacing, furrowed brow, frowning
  • Moaning, grunting, crying or calling out
  • Can’t sleep, restless sleep

Elderly woman with clenched fist, exhibiting signs of agitation.BEHAVIORAL SIGNS

  • Hallucinating, talking to people not there, even the deceased
  • Not recognizing you or where they are
  • Mood swings, personality changes
  • Paranoid, angry or suspicious
  • New confusion, distress, short attention span
  • Irritable, demanding
  • Uncharacteristic cursing, hostile words
  • Resists care, combative, lashing out physically
  • Mumbled or nonsensical speech
  • Undressing

SOME POSSIBLE CAUSES OF TERMINAL RESTLESSNESS

  • Organ and body system failures related to dying process; low blood oxygen level, chemical and electrolyte imbalance (high calcium levels), anemia
  • Constipation, urinary retention or dehydration
  • Poorly managed pain
  • Missed medication doses
  • Medication related; opioids, chemotherapy, steroids, anti-seizure meds
  • Fever which may signal an infection (urinary tract infection)
  • Nicotine or alcohol withdrawal at end of life
  • Emotional and spiritual distress; fear of death, anger, anxiety, guilt, unfinished business, unresolved issues, family discord. (These issues may be referred to as Terminal Anguish- and are best addressed before closing days of life)

WHAT YOU CAN DO ABOUT IT

  • Contact your Hospice Nurse; early intervention is best
  • Do not became agitated yourself, your behavior affects your loved one
  • Make any adjustments to the environment needed to assure safety
  • Provide calm atmosphere; adjust lighting, room temperature, add or turn off music, remove noisy distractions
  • Address physical discomfort; check bed for obstacles and bunched up sheets, reposition your loved one, move the pillows, adjust the urinary catheter
  • Limit the people in the room to 1-2 cooperative and calm people
  • Be ‘present’ with a calming demeanor and voice; touch, hold their hand
  • Speak only in reassuring ways; don’t ask questions, argue or correct
  • Gently remind your loved one of who you are and what your are going to do

Hospice nurse providing care and comfort to an elderly patient at Smoky Mountain Home Health and Hospice.WHAT YOUR NURSE WILL DO

They will return your call and/or come to your bedside to assess the situation with an eye towards making your loved one more comfortable and able to rest. Strategies may include addressing anxiety and pain control, overall medication management adjustments; and suggesting changes in the patient’s physical environment. They also have access to Chaplain and Social Worker support for spiritual or family related issues that may be contributing to the Terminal Agitation. Don’t overlook your own need for the comfort and reassurance a Chaplain or Social Worker can provide.

WHAT TO REPORT WHEN YOUR HOSPICE NURSE RESPONDS

  • The signs of agitation that your loved one is exhibiting
  • When the signs and behaviors began
  • What you have done thus far to try and help
  • Any safety or fall concerns you may have
  • What medications have been taken, any new meds, missed meds, etc.
  • What, if anything, your loved one is saying
  • Signs of pain noted such as grimacing, frowning, furrowing brow
  • When your loved one last urinated or had a bowel movement; any foul odor and/or color change noted with the urine
  • If there is a fever; provide the temperature
  • If the patient is using oxygen, then at what liter flow; oxygen saturation reading if you have access to a pulse oximeter.
  • If you suspect that emotional, spiritual or family distress might be a contributing factor

Two people holding hands, one lying in a hospital bed and the other sitting beside them, offering comfort.HOW SUCCESSFUL WILL CONTROL OF TERMINAL RESTLESSNESS BE?

Your Hospice Nurse may try several strategies to alleviate your loved ones restless distress. The chosen initial strategies may need to be adjusted. If a new medication is ordered- obtain it and get it started right away. It is very important to keep your Hospice Nurse informed of your loved one’s response to the strategies that are implemented and/or adjusted. Most of the time Terminal Restlessness can be eliminated or at least managed to a significant degree. Keep the lines of communication open between you and your Hospice Nurse.

YOUR OWN RESPONSE TO THIS END OF LIFE RESTLESSNESS

Unexpected behaviors and words can have an effect on you as the caregiver.  It is important to realize that dying people are in the process of ‘letting go.’  They are affected by the body shutting down and manifestations of this vary from person to person. They are not in control when in an agitated/restless state – things you may hear your loved one say should be viewed in that context.  Disjointed phrases, confused sentences, angry outbursts, use of language the person would not otherwise ever use is often an integral part of this terminal restlessness.  Don’t take it personal – take it as part of the process.  Again, your Smoky Mountain Hospice Nurse will work to bring calm and rest to your loved one…and to you too.  Feel free to share your feelings, fears and sadness with members of our team.  We are here to journey with you during this difficult time.

Frequently Asked Questions

Patients nearing the end of life may become agitated due to physical discomfort, medication side effects, or emotional distress. Conditions like pain, difficulty breathing, and confusion can cause restlessness. Additionally, unresolved emotional or spiritual issues may contribute to agitation.

Signs that the end of life is near include increased restlessness, changes in breathing, reduced interest in eating or drinking, and withdrawal from social interactions. Physical changes, such as cooling of the limbs and changes in skin color, may also be observed.

End of life delirium, or terminal agitation, can occur in the days or hours before death. The timing varies among individuals and depends on several factors, including the underlying illness and overall health condition.

As the body prepares for death, it typically undergoes three general stages of shutting down:

  1. Pre-active phase of dying: This phase can last about two weeks. Symptoms may include physical decline, decreased appetite and fluid intake, and increased sleep. The person may withdraw from social interactions and show less interest in their surroundings.

  2. Active phase of dying: This phase can last about three days and is characterized by further reduction in eating and drinking, significant changes in breathing patterns, and possible disorientation or agitation. Physical signs such as changes in skin color and temperature may be observed.

  3. Final hours: In the last hours before death, individuals often experience a significant decrease in consciousness. Breathing may become irregular and shallow, and there might be periods of apnea. Physical mobility is greatly reduced, and reflexes are diminished.

The duration between the onset of terminal agitation and death can vary widely among individuals. Terminal agitation typically occurs in the days or hours leading up to death, but it’s difficult to predict the exact timeline as it depends on the underlying conditions, the person’s overall health status, and how symptoms are managed. In some cases, death may follow shortly after the onset of significant agitation, while in others, it may occur several days later.

End of life agitation can manifest as physical restlessness, confusion, hallucinations, mood swings, and changes in personality. Patients may exhibit signs of discomfort, like grimacing or fidgeting, and may have difficulty finding peace or comfort

In the last 48 hours before death, significant changes may occur, including:

  • Deepening unconsciousness: The person may become increasingly difficult to awaken or communicate with.
  • Changes in breathing: Breathing patterns may change, becoming irregular, shallow, or exhibiting periods where breathing temporarily stops (apnea).
  • Cooling of the body: Extremities like hands and feet may become cool to the touch as circulation diminishes.
  • Changes in coloration: There may be a noticeable pallor or bluish tint to the skin, particularly on the lips and fingertips.
  • Decreased urine output: As fluid intake decreases and kidney function declines.
  • Restlessness or calm: Some individuals may become restless or agitated, while others may appear very calm and peaceful.

Signs that someone is transitioning to death include:

  • Reduced response: The person may no longer respond to verbal commands or physical stimuli.
  • Altered consciousness: They may slip in and out of consciousness or be entirely unresponsive.
  • Breathing changes: Irregular breathing patterns, such as Cheyne-Stokes respiration (a cycle of rapid breaths followed by periods of no breathing), are common.
  • Physical changes: Decreased blood pressure, changes in skin color and temperature, and reduced bodily functions.
  • Withdrawal: A marked decrease in interest in the external environment and in interactions with others.

The heart is often the last organ to shut down in the dying process. After other vital functions cease, the heart’s final beats mark the end of life.

Withdrawal is a common symptom at the end of life. Individuals may become less responsive to their surroundings and spend more time sleeping, showing less interest in eating or interacting with others. This change reflects a natural part of the dying process as the body conserves energy and focuses inward.