A fairly common yet potentially troubling phenomenon at end-of-life is delirium or agitation. Often referred to as terminal restlessness, this condition can be upsetting to the patient’s family or caregiver. Terminal restlessness is a combination of symptoms including physical and/or emotional restlessness, variable confusion, withdrawal, a reduction in awareness of patient’s environment and those who may be around. In addition, patients may experience sleep disturbances and cognitive decline (Hosker, 2016).
The onset of terminal restlessness can be very abrupt. It may last for a prolonged period or resolve quickly. Pharmacologic intervention is often necessary to promote comfort. Patients can exhibit behaviors including anger, agitation, sadness, hostility, fear and sleep disruption is not uncommon. Patients can be observed repetitive, picking motions. They may attempt to remove clothing as the restlessness worsens. (Hosker, 2016).
While terminal restlessness occurs often at night, it can happen at any time. Many of the behaviors are similar to those observed in patients with dementia although the patient may not have a dementia diagnosis. Differentiation of terminal restlessness from true dementia lies in the fact that people experiencing terminal restlessness are in the final stages of decline. Great importance is placed on remembering “to respect and dignify the dying process of the patient” (Pandharipande & Ely, 2017, p 1014).
The first line of treatment is to promote comfort by reducing or removing anything that may be causing or contributing to restlessness. Overstimulation is often a prime factor and the easiest to correct. Reducing noise, dimming lights, limiting the number of people in the room and promoting a restful environment may be enough to calm the patient. If agitation is severe enough, pharmacological intervention may be necessary.
Common medications used in the treatment of terminal restlessness include benzodiazepines like lorazepam and antipsychotics such as haloperidol. As an adjuvant, opioids are also used. Thorough education by the nurse of anyone giving medication for terminal restlessness is crucial to successful treatment of terminal restlessness and comfort of the patient.
Finally, added support for the caregiver is vital. As previously stated, terminal restlessness can be disturbing to an already stressed caregiver. Emotional and spiritual support benefit those providing care. Education regarding what is happening and that their loved one is likely entering final stages of the disease process will allow those providing care a more objective and informed understanding of what is going on.
Hosker, C. “Delirium and Agitation at the End of Life.” Student BMJ, Sept. 2016, student.bmj.com/student/student-bmj.html
Pandharipande, P., Ely, W., (2017). Humanizing the Treatment of Hyperactive Delirium in the Last Days of Life. JAMA, 318(11), 1014-1015. doi: 10.1001/jama.2017.11466