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 terminal restlessness. As someone deeply rooted in hospice care, I have witnessed various manifestations of this restlessness. Understanding its types, causes, and management strategies is crucial for providing compassionate end-of-life care. This article aims to illuminate the different kinds of terminal restlessness, identify reversible causes, and discuss effective management techniques. By equipping caregivers, families, and healthcare professionals with this knowledge, we can ensure that terminally ill individuals experience comfort and dignity in their final days.
Terminal Restlessness Types
Restlessness can manifest itself in many different ways. Just as each person is unique in their personality, idiosyncrasies, etc., terminal restlessness can also be unique. 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, inability to stay focused
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 compared 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 not wholly patent Foley)?
Is your patient showing signs they are constipated?
Is your patient’s pain adequately managed?
Any reversible causes should be treated based on the patient’s care goals and discussion with the patient and the family. If the restlessness reverses, it isn’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. (general inpatient hospice) or continuous care.
In my holistic practice as a nurse, I use the least of whatever works best. In practice, this can be as follows:
Non-pharmaceutical: dim the lights to create a soft and soothing environment, play the type of music the patient likes, often at a low volume, and slowly stroke the patient’s chest just below the clavicle (though for females, not touching the breast) or hold the patient’s hands. Consider using a small portable fan on the lowest setting pointing towards the patient’s left or right cheek and having the patient’s head on 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 applied to the patient’s skin — though I recommend using an infuser to 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 that the medications and doses are based on the writer’s anecdotal experiences over the past several years. Before any administration, they must be discussed with the provider(s) working with the patient, the patient, and the family.
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 terminally ill patients experience comfort and dignity in their final days. Collaboration between healthcare providers, patients, and families is essential to tailoring care to individual needs and preferences.
