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: signs & symptoms
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.
Agitation. Patients are unable to rest, relax or remain still. They may toss, turn, thrash, jerk, fidget, roll their heads, or pull at their clothing and bedsheets.
Aggression. Patients make angry outbursts, sometimes insulting, hitting, or pushing their caregivers. This can be especially hurtful to family members, but remember it is caused by pain and mental distortion, not genuine anger.
Paranoia. Patients may become suspicious of the people around them. For example, they may accuse caregivers of stealing their belongings. However, if the item is found and brought to them, often they forget about it immediately.
Lethargy. Patients become fatigued and sluggish. They are no longer alert or able to think clearly.
Wandering. Even though most patients are not mobile by this phase, they may still try and climb out of bed or leave the room.
Hallucinations. In some cases, patients may see or hear things that are not there. At times, they may be convinced someone who has died is in the room with them. If they are not disturbed by these visions, it is generally best to ignore or play along with them.
Confusion. If the patient’s mind was clear, it may become clouded. Their memory and attention span quickly deteriorate.
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.
Natural Decline. Underlying most cases of terminal restlessness is the patient’s deteriorating health. As their organs fail, their mind becomes impaired and they begin losing touch with the world, which makes them prone to erratic and irrational behavior.
Infection. Due to failing strength, hospice patients are vulnerable to disease, such as pneumonia. Urinary tract infections are also common. As a result of the fever, chills, congestion, and burning sensations, mental functions are even further undermined.
Pain. Pain exacerbates mental issues whenever it is poorly managed. In hospice, there may be multiple sources of pain that need to be addressed (e.g., terminal disease, infection, muscle decay), which can be difficult if the patient has lost the ability to communicate.
Medication. Sometimes, drugs given to ease pain and treat infection can trigger episodes of delirium. This is especially true of cancer medication, such as chemotherapy or steroids, whose side effects are more pronounced in people approaching the end of life.
Spiritual & Emotional Turmoil. Dying forces people to confront their fears, regrets, and uncertainties. They might be anxious about what lies beyond, worried about unfinished business (e.g., relationship issues, financial concerns), or simply not ready to go.
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.
Treating terminal restlessness
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:
Broad Spectrum Anti-Biotics. In a typical hospital setting, doctors would perform tests to determine the specific nature of an infection. However, testing is not only uncomfortable, but time-consuming. Therefore, in order to relieve symptoms quickly, hospice teams treat infections by targeting as many bacterial agents as they can with a single dose.
Rehydration. Dehydration leads to electrolyte imbalances. When this happens, sodium and potassium levels rise, leaving patients lethargic, confused, agitated, and in pain. If the patient cannot take water, artificial nutrition or ice chips may be used.
Pain Medication. Increasing pain medication is the best way to treat issues stemming from organ and metabolic failure.
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.
What can families do?
Witnessing a loved one suffer this type of agitation is hard. However, there are steps families can take to relieve some of the burden.
Create a Calm Environment. Overstimulation can aggravate terminal restlessness, so keep the room quiet as possible, except perhaps for some soft music. Next, adjust the lighting. Deep shadows can disorient and frighten people. Limit visitors as well. Large groups can quickly become overwhelming. Finally, rugs and mirrors have been known to trigger hallucinations, so you may have to remove them.
Speak in a Soothing Tone. Reassure your loved one by repeating phrases such as “You are safe,” “Everything is okay,” and “Do not worry. I will stay with you.” If they experience troubling hallucinations, you can say “I see you are worried” or “That sounds frightening.”
Hold Their Hand. Touch is very reassuring. One of the best ways to calm your loved one is to hold their hand or pat them on the arm or shoulder.
Keep them Safe. There is a danger your loved one may fall out of bed or injure themselves getting up, so stay close and watch them carefully.
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.
Coping with terminal restlessness
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.
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.