Navigating the final days of a loved one's life can be a challenging and emotional journey. One of the signs that can be observed during this time is known as . As someone deeply rooted in the realm of , I have witnessed various manifestations of this . Understanding its types, causes, and management strategies is crucial for providing compassionate end-of-life care. This article aims to shed light on the different types of , identify reversible causes, and discuss effective management techniques. By equipping caregivers, families, and healthcare professionals with this knowledge, we can ensure that the terminally ill individual experiences comfort and dignity in their final days.

Terminal Restlessness Types

can manifest itself in many different ways. Just as each person is unique in their personality, idiosyncrasies, etc. terminal restlessness can be unique as well. I've seen terminal restlessness come in two main forms where each can include the “other” category noted below:

Hyper:

  • The patient cannot find a place to be comfortable
  • Extreme fidgeting
  • Everything hurts
  • Spasms of pain; maybe in the lower back going upward or other locations.
  • The patient frequently tries to get out of bed when unsafe

Hypo:

  • Lethargic
  • Cannot keep eyes open
  • Increased forgetfulness and confusion, cannot stay focused
  • Here and there fidgeting
  • Slow arm movements — slow swimming

Other:

  • Picks at things not present
  • Cries out often with the words, “help me, help me, help me”
  • New-onset poor balance including poor gait
  • Increased falls

To determine if restlessness is an appropriate sign the person will pass at any time, we need to assess if the restlessness is reversible.

Reversible causes of restlessness — For the first six listed, I think about the D.O.G.i trying to pee or poop in the grass nearby.

  • Drugs — were there any medication changes?
  • Oxygenation — what is the patient's oxygenation saturation?
  • Glucose — what's the patient's blood sugar level especially in comparison to their baseline?
  • Infection — could the patient have an infection?
  • Is your patient having any signs of urinary retention (this can be a kinked or otherwise not completely patent foley)?
  • Is your patient showing signs they are constipated?
  • Is your patient's pain properly managed?

Any reversible causes should be treated based on the patient's goals of care and discussion with the patient and the family. If the restlessness reverses, it wasn't terminal restlessness.

Management of Terminal Restlessness

Restlessness is uncomfortable and should be treated especially if it cannot be reversed. Hospice nurses should keep in mind that unmanaged terminal restlessness can qualify for either G.I.P. ( hospice) or .

In my holistic practice as a nurse, I take the approach of using the least of whatever works best. In practice, this can be as follows:

Non-pharmaceutical: dim the lights create a soft and soothing environment, play the type of music the patient likes often at a low volume, slowly stroking the patient's chest just below the clavicle (though for females, not touching the breast) or holding the patient's hands. Consider using a small portable fan on the lowest setting pointing towards the patient's left or right cheek as well as having the patient's head of the bed at a 45-degree angle (this will also help with breathing and terminal secretions). Other non-pharmaceuticals include essential oils such as lavender and wild orange; use a carrier oil if applying to the patient's skin — though I recommend using an infuser so you can control the intensity of the scent.

Pharmaceutical (with a doctor's order in place): For most cases: 0.5 ml (1.0 mg) Haloperidol (2 mg/1 ml concentration) every six hours rotated at the three-hour mark with 0.5 mg Lorazepam melted in 0.25 ml of extremely warm (tolerable to drink) water such that every three hours the patient is either getting Haloperidol or Lorazepam. Then depending on the patient's respiration rate and how well these two medications are working, anywhere from 0.25 ml (5 mg) liquid morphine (20 mg/1 ml concentration) to 1.0 ml (20 mg) every hour as needed.

For extreme cases of terminal restlessness, work with the doctor to get approval for a cocktail that has worked wonders over the past several years that consists of 0.5 ml Haloperidol, 0.5 mg Lorazepam (melted as above), 1.0 ml liquid morphine given to the patient every 10 to 15 minutes until the patient is sedated, then switch to a rotation of 0.5 ml Haloperidol and 0.5 mg Lorazepam (as mentioned in the “most cases” approach) yet stick with 1.0 ml of the morphine unless the situation dictates trialing less.

It is important to note the medications and doses are based on anecdotal experiences of the writer over the past several years, and absolutely must be discussed with the provider(s) working with a patient, the patient, and family before any administration.

Conclusion

Understanding terminal restlessness is vital for providing compassionate end-of-life care. By recognizing its types, identifying reversible causes, and employing appropriate management strategies, we can ensure that the terminally ill patient experiences comfort and dignity in their final days. Collaboration between healthcare providers, patients, and families is essential to tailor care according to individual needs and preferences.

Resources

The Importance of Caregiver Journaling

Reporting Changes of Condition to Hospice

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

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Gone from My Sight: The Dying Experience

The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death

By Your Side , A Guide for Caring for the Dying at Home

Various articles with tips for nurses

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