Terminal Restlessness Explained

Terminal RestlessnessSome, not all individuals in hospice care experience terminal restlessness or agitation as they come closer to end of life.

What Is Terminal Restlessness?

 Terminal restlessness can be defined as:

  1.  increased anxiety
  2. agitation
  3. confusion

Witnessing a loved one experience terminal restlessness can be alarming to friends and family.  Calm, kind individuals can suddenly become agitated with “out of character behaviors” such as:

  • accusations of someone stealing from them
  • insisting on wanting to get up and go somewhere
  • calling the police
  • simply restless in bed picking at the bed covers, kicking off sheets
  • perhaps taking off items of clothes.
  • the individual themselves may be experiencing disorientation worsened from baseline, agitated delirium, and/or hallucinations (seeing things that are not there).

Is There a Cause For Terminal Restlessness?

 There can be several contributing factors that cause terminal agitation such as:

  • uncontrolled pain- the need to have high dose of analgesics to control pain
  • fevers
  • decreased oxygen saturations affecting the brain
  • metabolic or electrolyte disturbances
  • respiratory distress

Can My Loved One Be Comforted?

 These symptoms are part of the dying process as the body’s organs begin to shut down.  There are several interventions both caregiver and the hospice nurse can initiate to help comfort an individual experiencing these symptoms such as:

  • The addition to certain safety equipment such as side rails and/or fall pads in effort to keep them safe.
  • Increased supervision with a calming and reassuring presence of family and friends is essential.
  • Perhaps playing music that the individual likes, reading from a favorite book, prayer, or talking of fond memories.
  • The power of touch can also be assuring to the individual- gentle massage and a calm voice can do wonders.
  • Perhaps limiting the amount of visitors and decreasing stimulation can be helpful to the individual.

What Can Be Done To Relieve This?

 The hospice nurse will continue to assess what possible causes may be occurring and treat accordingly.

For example, if someone is having uncontrolled pain, the focus would be on addressing this issue to give the patient relief.  Perhaps the addition of supplemental oxygen will help with comfort and alleviate some confusion. Allowing those who are unable to provide a calming presence to be excused from the room of the individual.   Giving Tylenol to reduce a fever if present. Certain causes such as electrolyte or metabolic disturbances may occur as the terminal diagnosis advances.

The hospice nurse may in addition to these interventions, start an anti-anxiety medication (Ativan/ lorazepam is often recommended or tried, in some cases an addition of Haldol / haloperidol may be introduced) as directed by the hospice medical director to help alleviate the symptoms the individual is experiencing.

The hospice care team is there not only for the individual that is experiencing terminal agitation or restlessness, but to also support caregivers/family members who are often disturbed and upset witnessing their loved one in this state. Social work and chaplain services are continued to be  offered as the individual transitions through the varying stages of the dying process.

Through an interdisciplinary approach, terminal agitation can be managed with the ultimate goal of providing comfort and dignity for the individual experiencing  these symptoms and support for the loved ones involved.

Angels Grace Hospice, located in Bolingbrook, IL,  provides a customized care plan to meet the specific needs of patients.  We provide comfort care in your home, hospital, nursing home or assisted-living facility depending on your individual circumstances.  Contact us with any questions and for further assistance with your end of life care options.