Terminal restlessness, which can also be called terminal delirium or terminal agitation, is a common issue that many hospice patients may face at the end of their life. Anyone who experiences terminal restlessness can demonstrate high levels of agitation that manifest physically, mentally and emotionally, and this can present major obstacles to a hospice patient trying to be made calm and comfortable during the final moments of their lives. Terminal restlessness also presents unique challenges to caregivers, especially family members, making this type of end-of-life agitation a serious issue to deal with if it does occur. It can be painful and difficult to spend time with a loved one experiencing signs of terminal restlessness. Yet you’re not alone in such a situation. Here you will find helpful information the about terminal restlessness, including what it is, how it may manifest, and what you can do to cope with it and still provide the care your loved ones need during this, the final moments of their lives.
What is Terminal Restlessness?
Physiological changes experienced by a hospice patient near the end of life can cause discomfort, which can manifest into agitation. This can include wandering attention, aimlessness, and outbursts of emotion. There’s no set type of terminal restlessness, however, and this can sometimes make it difficult or even impossible to predict how a patient experiencing symptoms such as terminal agitation may act. This is often different than what you would expect a hospice patient to exhibit. In the end stages of life, it’s expected for raw emotions such as anger or depression to surface. Terminal restlessness, meanwhile, is more about incongruent behaviors appearing suddenly. This can either be overly calm and lethargic behavior or aggressive behavior, with the latter often being the most challenging to manage and experience for loved ones. Other ways terminal restlessness manifests include signs of mental function decline or dementia as well.
What Causes Terminal Agitation?
As referenced above, terminal agitation or restlessness can be caused by physiological changes to the body during the dying process. However, there are some external causes that might lead to terminal restlessness as well. These include: • Certain types of medications: Pain medications, especially opioids, are often used during hospice care. These often increase delirium, which can lead to terminal agitation. • Cancer treatment: Chemotherapy medications can ravage the body, and restlessness and agitation are often side effects of these cancer therapies. This is even more prevalent in those reaching the end of their life. • Poor pain management: Just as an over-reliance on opioids might lead to delirium-induced restlessness, poor pain management leads to patients being overwhelmed by pain and discomfort, which in turn makes their restlessness and agitation more pronounced. • Metabolic failure: The kidneys, the liver, and other organs begin to fail near the end of life, and the physiological issues these events cause can interfere with brain function and result in delirium, restlessness, and agitation. Additionally, when the heart or lungs begin to fail, the brain begins to receive less oxygen, which in turn can make terminal restlessness more pronounced. • Emotional and Mental Upheaval: The knowledge that you’re suffering from a terminal illness and you’re reaching the end of your life can be shattering for many hospice patients. It’s only natural that the emotional and mental turmoil this causes can lead to external manifestations in the form of terminal agitation or restlessness.
Terminal Restlessness Treatment and Management
Terminal restlessness can sometimes be treated, especially if the causes can be addressed. Ensuring a hospice patient’s pain management is balanced carefully between avoiding excessive use of opioids and letting pain and discomfort run rampant can go a long way in keeping someone reaching the end of their life more calm and comfortable. However, with so many different sources of terminal agitation unable to be treated because of the nature of the condition, the approach moves away from treatment and instead becomes a question of managing it instead. In circumstances like these, it can be extremely trying on a family member acting as a caregiver during their loved one’s hospice treatment. With terminal restlessness often manifesting as hostile words or actions coming from a beloved family figure, this can be both physically and emotionally challenging in ways you might not be prepared for. In such situations, it’s important to keep in mind that you’re only human, and being upset or shaken by these uncharacteristic emotional or physical outbursts is natural. Sometimes the only way you can comfort your dying loved one while they’re exhibiting terminal restlessness is to talk to them softly, clearly, and calmly, no matter what they may do or say. The key is to not take any of it personally, and to not get agitated in return. It is not your loved one’s fault.
Contact a Professional
Few of us are prepared to serve as a caregiver for a dying loved one, especially if they are experiencing terminal restlessness or agitation. It can be an isolating experience that may leave you feeling frustrated and helpless, not to mention feeling guilty about not being able to provide the care you feel your loved one needs during their end of life transition. However, this is not the time to lose hope; in instances like these, it’s absolutely expected that you might need help coping with this task. If you’re providing hospice at home for your loved one, you will almost certainly need outside support, so don’t ever feel like you shouldn’t reach out for the help you need.
During this difficult time, there are a number of resources you can avail yourself of. However, when it comes to providing care to a dying loved one, the best source of help and advice you can get anywhere is from your hospice nurse. As a medical professional with experience in hospice care and everything that it entails, including managing terminal restlessness, your hospice nurse can be an invaluable source of advice for keeping your loved one calm and comfortable, even in the face of terminal agitation.
End-of-Life signs by disease.
Learn about the specific end-of-life signs of common diseases and illnesses: