Table of ContentsView AllTable of ContentsSymptomsCausesDiagnosisTreatmentCopingFrequently Asked Questions
Table of ContentsView All
View All
Table of Contents
Symptoms
Causes
Diagnosis
Treatment
Coping
Frequently Asked Questions
Terminal restlessness, also called terminal agitation or terminal delirium, occurs in the daysleading to death. People may beanxious, agitated, or show signs of cognitive decline. This syndrome has many causes and treatment may not be needed, depending on the individual.
It can be distressing to watch your loved one go through this. You may wonder if there is something you should do about it. If you and your family already know and accept that your loved one is at the end of their life, responding calmly may make the transition a little easier.
This article explains in more detail the changes that terminal restlessness may bring. It offers some insights to help you promote your loved one’s comfort during these final days.
Verywell / Andrea Hickey
Each life and death is unique. The signs and symptoms of terminal restlessness may appear as aggressive behavior. You also may see unusually calm behavior. Emotionally, it’s the aggressive often hostile behavior that is more difficult to watch. It also may be harder for you to manage.
Some behaviors are quite common when a loved one has terminal restlessness. The pattern of these symptoms may include:
These behaviors likely stem from discomfort and changes in the body as death approaches, rather than genuine anger or hostility.
Terminal restlessness describes a more sudden shift in behaviors at the end of life. It is different from the anger, depression, or other emotions that are common during thestages of dying.
Many of the behaviors are similar to those seen indementia, the decline of mental function often seen in older people.A dying loved one may seem uncomfortable. They may constantly pull at their clothes, bedsheets, and any intravenous (IV) lines.
Others may seem indecisive. They look for items or ask for something, and then turn away from it. They may seem mean-spirited or accuse people of offenses that may or may not make sense.
Sometimes, the restlessness appears briefly and then goes away on its own. A number of other well-recognizedend-of-life symptomsalso may happen at the same time when a person has terminal restlessness. These may include pulling away from intimacy with others or talking about dead family members.
There are quite a few likely causes of terminal restlessness. Many of the physical changes that come with the dying process can lead to this type of delirium. Some of these causes may be easy to reverse, while others are not.
The most common causes include:
Terminal restlessness is common at the end of life. Your loved one may seem confused, agitated, or angry. They may fidget with their clothes or become withdrawn.Many causes, including organ failure or the drugs used to treat their illness, may be at work.
Terminal restlessness is common at the end of life. Your loved one may seem confused, agitated, or angry. They may fidget with their clothes or become withdrawn.
Many causes, including organ failure or the drugs used to treat their illness, may be at work.
Psychologists will typically describe the stages of dying as denial, anger, bargaining, depression, and acceptance (DABDA). During this time, a person may experience outbursts and irrational behaviors.
The stages of dying are different from terminal restlessness in that these stages begin at the time of the diagnosis. With terminal restlessness, they occur in tandem with end-of-life decline. However, the DABDA stages and the restlessness can occur at the same time.
Terminal restlessness is sometimes confused with nearing death awareness. This is when a person may appear to hallucinate as if having visions or talking with loved ones who are already dead.Each situation is unique, but both can occur at the same time. It may be hard to tell the difference.
Terminal restlessness is usually only treated if the behaviors place the person or others at harm. Options include mild tranquilizers calledbenzodiazepinesand anti-psychotic drugs calledphenothiazines.
However, it’s important to speak up if needed to ensure care for a loved one. A 2023 study of 2,786 terminally ill people found the goals for nearly half of them were not fully met when managing pain and restlessness during their first four hours in the Dutch Care Programme for the Dying Person. During the last four hours before death, 21.9% of the care goals for restlessness were not achieved.
When to Call a Healthcare ProviderMany people are comfortable as they approach the end of life. Often, any intervention will only occur when an agitated person has the potential for self-harm or presents a threat to others. You also may wish to contact a healthcare provider if terminal restlessness is a new shift in disease progression, or if you suspect a reversible underlying reason such as medications, infection, or hydration and fluid intake.
When to Call a Healthcare Provider
Many people are comfortable as they approach the end of life. Often, any intervention will only occur when an agitated person has the potential for self-harm or presents a threat to others. You also may wish to contact a healthcare provider if terminal restlessness is a new shift in disease progression, or if you suspect a reversible underlying reason such as medications, infection, or hydration and fluid intake.
Terminal Restlessness and Delirium at the End of Life
How a dying person with terminal restlessness behaves is not always consistent with their lifelong personality. Their actions do not always reflect how they feel about you. It’s important to remember this, whether they are angry and their actions are hostile, or they are calm and reflecting on memories.
Many emotions can come simply because you know death is near. Your loved one’s terminal restlessness may add to your distress because of what they say and do. This may cause you to feel guilty about how you are handling your loved one’sdying process.
Caregiving is hard work and often leaves limited time for self-care. But it’s important that you do take breaks, so consider arespite careprogram in your community. You also may want to join a support group for caregivers, where you can ask questions and share your experiences.
Types of Caregiver Burnout and How to Prevent It
Hospice and Professional Caretakers
Some families opt to work with ahospiceteam because experienced end-of-life professionals can let you know what to expect. They are familiar with what types of interventions are needed.Close friends and other family members also can help you make it through this difficult time, too, but teams of medical professionals, alongside social workers and spiritual caregivers, are important.
Bothpalliative careand hospice care may be options, but keep in mind that they don’t always mean the same thing. Palliative care is focused on reducing pain and protecting quality of life throughout the journey of someone who’s terminally ill. Hospice typically is more focused on end-of-life needs.
Advantages and Disadvantages of Hospice Care
Summary
The symptoms of terminal restlessness are common when a person is close to death. They may include agitation and aggressive behavior, or even an unusual sense of calm and reflection.
There are many causes of terminal restlessness, such as pain, medications, and emotions about dying. For many people at the end of life, there is more than one cause happening at the same time.
Treatment usually means keeping the person as comfortable as possible. In some cases, mild tranquilizers and anti-psychotic drugs may be used to treat the symptoms of terminal restlessness. Dealing with pain or discomfort as gently as possible, often with help from healthcare providers, can help make the last few days easier for everyone involved.
Most people want death to be a comfortable and peaceful experience. If your loved one is dealing with terminal restlessness, their final days may appear just the opposite.
Frequently Asked QuestionsTerminal restlessness often begins in the week or two before a person dies.The dying process speeds up during this time. The symptoms of restlessness typically diminish as death approaches, with many people becoming unresponsive in their final days and hours.Learn MoreEnd-of-Life Stages TimelineMany people benefit from medication when experiencing symptoms of terminal restlessness. Some studies suggest acupuncture may offer benefits.You also can try to keep the surrounding environment calm, with low light, soothing sounds, and a comforting presence and touch.Learn MoreThe Benefits and Side Effects of AcupunctureIt’s very common to find symptoms of terminal restlessness upsetting and confusing. You may experience sadness, guilt, anger, and shame, among other emotions.When healthcare teams provide information about the cause of symptoms, it can help families to cope.Learn MoreEnd of Life Concerns
Terminal restlessness often begins in the week or two before a person dies.The dying process speeds up during this time. The symptoms of restlessness typically diminish as death approaches, with many people becoming unresponsive in their final days and hours.Learn MoreEnd-of-Life Stages Timeline
Terminal restlessness often begins in the week or two before a person dies.The dying process speeds up during this time. The symptoms of restlessness typically diminish as death approaches, with many people becoming unresponsive in their final days and hours.
Learn MoreEnd-of-Life Stages Timeline
Many people benefit from medication when experiencing symptoms of terminal restlessness. Some studies suggest acupuncture may offer benefits.You also can try to keep the surrounding environment calm, with low light, soothing sounds, and a comforting presence and touch.Learn MoreThe Benefits and Side Effects of Acupuncture
Many people benefit from medication when experiencing symptoms of terminal restlessness. Some studies suggest acupuncture may offer benefits.You also can try to keep the surrounding environment calm, with low light, soothing sounds, and a comforting presence and touch.
Learn MoreThe Benefits and Side Effects of Acupuncture
It’s very common to find symptoms of terminal restlessness upsetting and confusing. You may experience sadness, guilt, anger, and shame, among other emotions.When healthcare teams provide information about the cause of symptoms, it can help families to cope.Learn MoreEnd of Life Concerns
It’s very common to find symptoms of terminal restlessness upsetting and confusing. You may experience sadness, guilt, anger, and shame, among other emotions.When healthcare teams provide information about the cause of symptoms, it can help families to cope.
Learn MoreEnd of Life Concerns
12 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Hosker CM, Bennett MI.Delirium and agitation at the end of life.BMJ. 2016;353:i3085. doi:10.1136/bmj.i3085National Cancer Institute.Last days of life (PDQ)-Patient version.Regier NG, Gitlin LN.Towards defining restlessness in individuals with dementia.Aging Ment Health. 2017;21(5):543‐552. doi:10.1080/13607863.2015.1128880Lokker ME, Heide A van der, Oldenmenger WH, Rijt CCD van der, Zuylen L van.Hydration and symptoms in the last days of life.BMJ Supportive & Palliative Care. 2021;11(3):335-343. doi:10.1136/bmjspcare-2018-001729National Cancer Institute.Last days of life (PDQ)-Health professional version.Tyrrell P, Harberger S, Schoo C, Siddiqui W.Kubler-ross stages of dying and subsequent models of grief. 2022.Hui D.Benzodiazepines for agitation in patients with delirium: selecting the right patient, right time, and right indication.Current Opinion in Supportive & Palliative Care. 2018;12(4):489-494. doi:10.1097/SPC.0000000000000395Heijltjes MT, van Zuylen L, van Thiel GJ, van Delden JJ, van der Heide A.Symptom evolution in the dying.BMJ Support Palliat Care. 2023 Mar;13(1):121-124. doi:10.1136/spcare-2022-003718.Harvard Health Publishing.Choosing Hospice.Foundation of America.Signs of Approaching Death.Konstantinou A, Alexakis LC.Managing terminal restlessness, anxiety, and distress during the dying process with Yintang (EX-HN 3) point acupuncture or acupressure: a case series of 19 palliative care patients from a hospital in Germany.Pan Afr Med J. 2022 Jun 7;42:99. doi:10.11604/pamj.2022.42.99.32513.Finucane AM, Lugton J, Kennedy C, Spiller JA.The experiences of caregivers of patients with delirium, and their role in its management in palliative care settings: an integrative literature review.Psychooncology. 2017 Mar;26(3):291-300. doi:10.1002/pon.4140.
12 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Hosker CM, Bennett MI.Delirium and agitation at the end of life.BMJ. 2016;353:i3085. doi:10.1136/bmj.i3085National Cancer Institute.Last days of life (PDQ)-Patient version.Regier NG, Gitlin LN.Towards defining restlessness in individuals with dementia.Aging Ment Health. 2017;21(5):543‐552. doi:10.1080/13607863.2015.1128880Lokker ME, Heide A van der, Oldenmenger WH, Rijt CCD van der, Zuylen L van.Hydration and symptoms in the last days of life.BMJ Supportive & Palliative Care. 2021;11(3):335-343. doi:10.1136/bmjspcare-2018-001729National Cancer Institute.Last days of life (PDQ)-Health professional version.Tyrrell P, Harberger S, Schoo C, Siddiqui W.Kubler-ross stages of dying and subsequent models of grief. 2022.Hui D.Benzodiazepines for agitation in patients with delirium: selecting the right patient, right time, and right indication.Current Opinion in Supportive & Palliative Care. 2018;12(4):489-494. doi:10.1097/SPC.0000000000000395Heijltjes MT, van Zuylen L, van Thiel GJ, van Delden JJ, van der Heide A.Symptom evolution in the dying.BMJ Support Palliat Care. 2023 Mar;13(1):121-124. doi:10.1136/spcare-2022-003718.Harvard Health Publishing.Choosing Hospice.Foundation of America.Signs of Approaching Death.Konstantinou A, Alexakis LC.Managing terminal restlessness, anxiety, and distress during the dying process with Yintang (EX-HN 3) point acupuncture or acupressure: a case series of 19 palliative care patients from a hospital in Germany.Pan Afr Med J. 2022 Jun 7;42:99. doi:10.11604/pamj.2022.42.99.32513.Finucane AM, Lugton J, Kennedy C, Spiller JA.The experiences of caregivers of patients with delirium, and their role in its management in palliative care settings: an integrative literature review.Psychooncology. 2017 Mar;26(3):291-300. doi:10.1002/pon.4140.
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Hosker CM, Bennett MI.Delirium and agitation at the end of life.BMJ. 2016;353:i3085. doi:10.1136/bmj.i3085National Cancer Institute.Last days of life (PDQ)-Patient version.Regier NG, Gitlin LN.Towards defining restlessness in individuals with dementia.Aging Ment Health. 2017;21(5):543‐552. doi:10.1080/13607863.2015.1128880Lokker ME, Heide A van der, Oldenmenger WH, Rijt CCD van der, Zuylen L van.Hydration and symptoms in the last days of life.BMJ Supportive & Palliative Care. 2021;11(3):335-343. doi:10.1136/bmjspcare-2018-001729National Cancer Institute.Last days of life (PDQ)-Health professional version.Tyrrell P, Harberger S, Schoo C, Siddiqui W.Kubler-ross stages of dying and subsequent models of grief. 2022.Hui D.Benzodiazepines for agitation in patients with delirium: selecting the right patient, right time, and right indication.Current Opinion in Supportive & Palliative Care. 2018;12(4):489-494. doi:10.1097/SPC.0000000000000395Heijltjes MT, van Zuylen L, van Thiel GJ, van Delden JJ, van der Heide A.Symptom evolution in the dying.BMJ Support Palliat Care. 2023 Mar;13(1):121-124. doi:10.1136/spcare-2022-003718.Harvard Health Publishing.Choosing Hospice.Foundation of America.Signs of Approaching Death.Konstantinou A, Alexakis LC.Managing terminal restlessness, anxiety, and distress during the dying process with Yintang (EX-HN 3) point acupuncture or acupressure: a case series of 19 palliative care patients from a hospital in Germany.Pan Afr Med J. 2022 Jun 7;42:99. doi:10.11604/pamj.2022.42.99.32513.Finucane AM, Lugton J, Kennedy C, Spiller JA.The experiences of caregivers of patients with delirium, and their role in its management in palliative care settings: an integrative literature review.Psychooncology. 2017 Mar;26(3):291-300. doi:10.1002/pon.4140.
Hosker CM, Bennett MI.Delirium and agitation at the end of life.BMJ. 2016;353:i3085. doi:10.1136/bmj.i3085
National Cancer Institute.Last days of life (PDQ)-Patient version.
Regier NG, Gitlin LN.Towards defining restlessness in individuals with dementia.Aging Ment Health. 2017;21(5):543‐552. doi:10.1080/13607863.2015.1128880
Lokker ME, Heide A van der, Oldenmenger WH, Rijt CCD van der, Zuylen L van.Hydration and symptoms in the last days of life.BMJ Supportive & Palliative Care. 2021;11(3):335-343. doi:10.1136/bmjspcare-2018-001729
National Cancer Institute.Last days of life (PDQ)-Health professional version.
Tyrrell P, Harberger S, Schoo C, Siddiqui W.Kubler-ross stages of dying and subsequent models of grief. 2022.
Hui D.Benzodiazepines for agitation in patients with delirium: selecting the right patient, right time, and right indication.Current Opinion in Supportive & Palliative Care. 2018;12(4):489-494. doi:10.1097/SPC.0000000000000395
Heijltjes MT, van Zuylen L, van Thiel GJ, van Delden JJ, van der Heide A.Symptom evolution in the dying.BMJ Support Palliat Care. 2023 Mar;13(1):121-124. doi:10.1136/spcare-2022-003718.
Harvard Health Publishing.Choosing Hospice.
Foundation of America.Signs of Approaching Death.
Konstantinou A, Alexakis LC.Managing terminal restlessness, anxiety, and distress during the dying process with Yintang (EX-HN 3) point acupuncture or acupressure: a case series of 19 palliative care patients from a hospital in Germany.Pan Afr Med J. 2022 Jun 7;42:99. doi:10.11604/pamj.2022.42.99.32513.
Finucane AM, Lugton J, Kennedy C, Spiller JA.The experiences of caregivers of patients with delirium, and their role in its management in palliative care settings: an integrative literature review.Psychooncology. 2017 Mar;26(3):291-300. doi:10.1002/pon.4140.
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