When their time comes, we hope our loved one dies peacefully. Unfortunately, the process is not always soft and gradual. In the final days or weeks, complications can emerge that upset our loved one’s well-being, leaving them agitated, delirious, or even hostile. Treating and comforting patients experiencing this type of terminal restlessness is a major challenge in hospice and palliative care. In order to provide a calm, comfortable transition, caregivers need to understand what terminal restlessness is, how it is identified, and how it is treated.
Terminal restlessness causes sudden and incongruent behavior, brought on by physical distress, psychological discomfort, or both. Previously calm patients can turn abruptly, exhibiting a range of troublesome and alarming symptoms.
Terminal restlessness generally occurs in the last few days of life. Around 42 percent of hospice patients experience agitation during their final 48 hours. But even more develop symptoms before then, which may not subside until death.
Terminal restlessness does not have a single cause. Instead, there are multiple factors at work driving patients into an anxious, fretful, and disturbed state of mind.
Since its underlying causes are so complex, terminal restlessness cannot be treated with a single intervention. Instead, hospice and palliative care teams work through each cause one by one in hopes of restoring the patient’s peace of mind.
Because it occurs so close to the end of life, there is no cure for terminal restlessness. Its largest contributing factors (degenerative disease, metabolic failure) cannot be reversed. Instead, hospice workers focus on soothing symptoms, reducing pain, and restoring comfort.
Though physical and psychological factors overlap, the first focus is on physical causes. If these are not resolved, it is impossible to judge the effectiveness of subsequent treatments. Hospice teams typically start with:
If the patient is still restless, the team may prescribe anti-anxiety medication, such as lorazepam. They only administer as much as they need to calm the patient, not sedate them. Knowing how important it is for families to communicate, they do their best to leave the patient cognizant of their surroundings.
Witnessing a loved one suffer this type of agitation is hard. However, there are steps families can take to relieve some of the burden.
Lastly, contact the hospice team as soon as you notice signs of terminal restlessness. Early treatment is the best way of ensuring the patient’s comfort and dignity.
Terminal restlessness not only harms a person’s quality of life. It strikes at a time when they and their families are trying to express their final thoughts to one another. Moreover, it interferes with hospice care at home. Around one-third of inpatient hospice admissions are due to delirium, which makes it hard for families to remain close. For this reason, they should be aware of what terminal restlessness is and how to respond. The faster steps are taken, the better their loved one’s transition will be.
Parentis Health Hospice Care works to prevent discomfort and distress in people with life-limiting illnesses. If you have a loved one who needs help, contact our team. In most cases, they can be onsite in less than 24 hours.
Jose Escobar is the Hospice Executive for Parentis Health. He works with patients and families across Southern California, providing support and education, in order to alleviate the pain and suffering of chronic and terminal illness.