End of Life Concerns Pain & Symptom Control Terminal Restlessness and Delirium at the End of Life Common Characteristics By Angela Morrow, RN Angela Morrow, RN LinkedIn Angela Morrow, RN, BSN, CHPN, is a certified hospice and palliative care nurse. Learn about our editorial process Updated on February 18, 2023 Medically reviewed by Kashif J. Piracha, MD Medically reviewed by Kashif J. Piracha, MD LinkedIn Kashif J. Piracha, MD, is a board-certified physician with over 14 years of experience treating patients in acute care hospitals and rehabilitation facilities. Learn about our Medical Expert Board Fact checked by Marley Hall Fact checked by Marley Hall LinkedIn Marley Hall is a writer and fact checker who is certified in clinical and translational research. Her work has been published in medical journals in the field of surgery, and she has received numerous awards for publication in education. Learn about our editorial process Print Table of Contents View All Table of Contents Delirium Terminal Restlessness Causes What to Do It's not uncommon for a terminally ill loved one to become unusually restless or even agitated, but it is often distressing for family and friends to witness. The depth of such restlessness or agitation varies from patient to patient; in some cases, it can progress to a state known as "terminal restlessness," or "terminal delirium." Recognizing the symptoms can help you learn how to help a loved one who is experiencing them. Brad Wilson / Getty Images What Is Delirium? Delirium is a complex psychiatric syndrome, also sometimes referred to as organic brain syndrome, confusion, encephalopathy or impaired mental status. You may notice a sudden change in your loved one's alertness and behavior. This change can sometimes fluctuate over the course of a day, and it usually gets worse at night. Some other characteristics of delirium include: Impaired level of consciousness with reduced awareness of the surrounding environment Impaired short-term memory and attention span Disorientation in time and place Delusions and/or hallucinations (believing and/or seeing things that are not real) Speaking very loudly or softly, rapidly or slowly Mood swings Sleep disturbances, such as insomnia or reversed sleep cycle Increased or decreased body movements that may be very fast or slow What Is Terminal Restlessness? Terminal restlessness is a particularly distressing form of delirium that sometimes occurs in dying patients. It is characterized by anguish (spiritual, emotional, or physical), restlessness, anxiety, agitation, and cognitive failure. Delirium is common towards the end of life and is a phenomenon that can have different causes. Sometimes it can be reversible if the culprit is easy to treat and the patient is stable enough (e.g., treating an underlying urinary tract infection that contributed to delirium). However, sometimes delirium is part of the final stages of dying—so-called terminal delirium or terminal restlessness—and it becomes an irreversible process that is often treated symptomatically, with the goal of providing comfort (i.e., sedation) instead of reversing the syndrome. Terminal restlessness is distressing because it has a direct negative impact on the dying process. Everyone wants death to be a comfortable and peaceful experience, but when someone is dying with terminal restlessness, their death can be anything but. When someone suffers from a terminal illness, they can become irritable, sullen, frustrated, and angry. These kinds of mood shifts can be intense, and, when nearing the end, profound mood changes can occur. This can be particularly difficult for caregivers and loved ones to deal with, causing fear and a feeling of helplessness. Terminal restlessness has the potential to be confused with a state called nearing death awareness, which is described as a dying person's instinctual knowledge that death is near. It's important for loved ones and healthcare professionals to understand the phenomenon of nearing death awareness so they can be equipped to support a dying person's unique needs. Recognizing Terminal Restlessness at the End of Life Causes Delirium and terminal restlessness have many causes. Some causes are easily reversed, while others are not. Medications are one of the most common causes of delirium, including opioids, anti-seizure drugs, steroids, and anxiolytics. Overuse of medications can cause toxicity and under-use can cause pain and discomfort, all which can further worsen delirium. Some other common causes include: Untreated physical pain or discomfort Dehydration Decreased oxygen in the blood/brain Anemia (decreased red blood cells) Infections and fevers Brain tumors/brain swelling Urinary retention (caused by disease, a kinked catheter, or bladder spasms) Constipation or fecal impaction Fear, anxiety, emotional turmoil Cancer treatments Metabolic disturbances (common at the end of life as vital organs begin to shut down) Symptoms and Management of End-of-Life Anxiety What Should You Do? Multiple factors underlie delirium, and therefore actually reversing the process might be hard to achieve. For example, dehydration often contributes to delirium at the end of life; however, aggressive hydration with intravenous fluids—intended to treat delirium—can lead to water in the lungs and a whole new set of problems. If delirium is understood in the context of a patient's last hours to days on earth, then the emphasis needs to be not on treatment of the underlying cause, but rather on decreasing the agitation, hallucinations, and behavioral issues. This is largely accomplished with sedation or otherwise helping the patient stay comfortable in this stage of their dying process. If you have a hospice team, their extensive experience with this can be tremendously helpful. Properly identifying the cause of delirium and treating it effectively may take several days, but with the support of the hospice team, close friends, and other family members, it is likely that your loved one will settle down and feel less distressed. A Word From Verywell Delirium isn't the same in everyone. It can mimic other illnesses and syndromes, making it difficult to recognize and treat. If you notice your loved one is acting out of sorts, has new memory loss, or is experiencing changes in his sleeping pattern, contact their healthcare provider. Preparing for a Loved One's Death 6 Sources Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy. Agar M, Bush SH. Delirium at the end of life. Med Clin North Am. 2020;104(3):491-501. doi:10.1016/j.mcna.2020.01.006 Boettger S, Boettger S, Breitbart W. The phenomenology of delirium: presence, severity, and relationship between symptoms. Journal of Geriatrics. 2014;2014. doi:10.1155/2014/427042 Bush SH, Leonard MM, Agar M, et al. End-of-life delirium: issues regarding recognition, optimal management, and the role of sedation in the dying phase. Journal of Pain and Symptom Management. 2014;48(2):215-230. doi:j.jpainsymman.2014.05.009 Bramati P, Bruera E. Delirium in Palliative Care. Cancers (Basel). 2021 Nov 23;13(23):5893. doi:10.3390/cancers13235893 Rossi Varallo F, Maicon de Oliveira A, Cristina Barboza Zanetti A, et al. Drug-induced delirium among older people. In: Teresa Herdeiro M, Roque F, Figueiras A, Magalhães Silva T, eds. New Insights into the Future of Pharmacoepidemiology and Drug Safety. IntechOpen; 2021. doi:10.5772/intechopen.95470 Marcantonio ER. Delirium in Hospitalized Older Adults. N Engl J Med. 2017 Oct 12;377(15):1456-1466. doi:10.1056/NEJMcp1605501 By Angela Morrow, RN Angela Morrow, RN, BSN, CHPN, is a certified hospice and palliative care nurse. See Our Editorial Process Meet Our Medical Expert Board Share Feedback Was this page helpful? Thanks for your feedback! What is your feedback? Other Helpful Report an Error Submit