What is terminal agitation? Symptoms, support and more

Terminal agitation is the term for a collection of symptoms that can occur at the end of a person’s life. These symptoms can include restlessness, emotional distress, and confusion.

These symptoms can sometimes be accompanied by more serious psychological symptoms, usually called delirium.

Terminal agitation can be caused by a number of factors associated with death, including medications used to relieve symptoms, organ failure, and emotional distress.

Read on to learn how to recognize the symptoms of terminal agitation and how to help someone you love cope with the physical, mental, and emotional experiences that can occur at the end of life.

Terminal agitation may look different in each person it affects. Some people may become much calmer than they usually are, while others may become aggressive or have mood swings.

Common symptoms of terminal agitation may include:

People with terminal agitation may also exhibit unusual behaviors. These behaviors often occur when the person is in an agitated state. Examples include:

  • shoot intravenous (IV) tubes
  • to get undressed
  • tug and tug on the sheets
  • fight with or insult loved ones or guardians
  • bring charges based on events that might not have happened
  • search or request items they don’t actually want
  • reject physical contact and affection from family and other loved ones

People who suffer from terminal agitation may also experience delirium, which can lead to extreme confusion as well as other symptoms, such as:

Terminal agitation occurs at the end of life and does not necessarily have a precise cause.

The dying process causes physical changes in the body and is often mentally and emotionally overwhelming. This can lead to terminal agitation and delirium.

Certain medications prescribed to help treat the pain and symptoms associated with certain medical conditions can also lead to agitation and delirium.

Some of the most common causes of terminal restlessness include:

  • Chemotherapy: Chemotherapy kills cancer cells, but it is harsh on the rest of the body and can cause restlessness in people at the end of life.
  • Pain medications: Opioids, steroids, and other pain relievers are often prescribed to help reduce pain and provide comfort during end-of-life care. But they can also increase the risk of delirium. This risk increases if someone suffers from organ failure.
  • Organ failure: Organ failure can prevent the body from performing basic functions. This can alter the way brain chemistry works and lead to terminal agitation and delirium.
  • Pain: Managing pain effectively at the end of life can be difficult. Severe pain that is poorly controlled can increase the risk terminal restlessness.
  • Medical difficulties: It is common to experience medical difficulties such as anemia, infections, fever or dehydration at the end of life. These can all affect brain function and lead to terminal restlessness.
  • Urinary retention and constipation: At the end of life, the muscles that control urination and bowel movements may weaken and not function properly. This can lead to constipation and urinary retention. Both can cause pain and lead to terminal restlessness.
  • The feelings of dying: Dying takes a heavy emotional toll on everyone. It is common to feel grief, stress, fear, and other strong emotions. This distress can lead to terminal restlessness.

The management of terminal agitation and delirium depends on the person and their symptoms.

Some management options include:

  • changing medications or medication doses
  • speak with someone who has experience in end-of-life care and counseling, such as hospice social workers or bereavement counselors
  • consult with spiritual leaders, such as priests, ministers, rabbis, or imams

Terminal agitation or delirium can sometimes lead to behaviors that are harmful to the person or others. In these cases, additional treatments like antipsychotic medications can relieve the agitation.

Doctors will discuss end-of-life treatment plans with family and caregivers, to make sure everyone understands the options.

End-of-life care includes taking care of a person’s physical, mental and emotional needs.

Services such as home care or palliative care can help family or caregivers provide appropriate care for their loved ones. Each person’s exact needs will be different, but here are some general tips for end-of-life care:

  • Look for ways to make sure your loved one is not in pain:Talk to a doctor and medical team about prescriptions and any signs of pain you notice.
  • Keep tasks simple: It is normal for people to feel tired during this time. Make tasks like going to the bathroom, eating, and other daily needs as simple and easy as possible.
  • Provide blankets, fans, cool washcloths, and other means of temperature control:Look for signs that your loved one is too hot or too cold. He may not be able to express his discomfort easily, so check to see if his hands and feet feel cold or warm to the touch and watch out for repeated tugging at a blanket.
  • Check that you are breathing comfortably: It is common to have trouble breathing at the end of life. Raise the head of the bed, turn on a humidifier, or adopt a position that makes it easier to breathe.
  • Be aware that your loved one may stop eating: Help your loved one eat and talk to a doctor about medications that relieve nausea and vomiting. Remember that as they get closer to death, it is normal and acceptable for someone to simply stop eating.
  • Keep skin hydrated with petroleum jelly and other alcohol-free lotions: Help protect your loved one’s skin by turning them over to bed every two hours. This will prevent them from lying on one side for too long and will help prevent pressure sores.
  • Talk to your loved one about their feelings: Dying can be an overwhelming emotional experience. Being a support listener can be an incredible help. Ask if your loved one would like to speak to a professional, such as a counselor or social worker.
  • Tell your loved one’s healthcare team if you notice any changes in mood or behavior: It’s normal to have a lot of emotions about dying. But if your loved one seems particularly depressed, anxious or distressed, talk to their healthcare team. Mental health professionals and medication can help.
  • Provide opportunities to connect with faith:Spiritual practices are important for many people at the end of life. It may be helpful to have religious texts or music available. A visit from a religious leader can also bring comfort.
  • Provide companionship: The simple fact of not being alone can often make a big difference. Try spending time with your loved one by talking to them, watching your favorite movies, reminiscing, holding their hand, or listening to music.
  • keep talking:People may be able to hear even after they stop responding. That’s why doctors often encourage caregivers, family members, and friends to have a last conversation with dying people, even if those people can’t respond.

It can be difficult to watch over a dying loved one, and the terminal turmoil can be particularly difficult and overwhelming.

That’s why it’s so important for caregivers and family members of people with terminal agitation to seek help. It can help:

  • Look to other family members: Often, even phone calls with friends can help take some of the weight off your shoulders. Friends and family can also cook meals, run errands, and take care of other chores for you.
  • Take a break: Arrange to go for a walk, go to the gym, or do whatever else outside your home and on your own for about an hour. It can help clear your head and relieve your stress.
  • Find out about respite care: If you need a longer break, respite care may be the answer. Respite care can help ensure that your loved one is cared for for hours, days, or even months.
  • Seek bereavement counseling: Bereavement counselors are professionals who can help you manage your emotions. Your insurance company may cover this type of counseling. If not, there are ways to find low-cost services.
  • Seek peer support or online group support:Peer and online support groups can help you connect with others who are facing the same challenges as you.
  • Consider palliative care: Palliative care can provide nursing, care, medical, mental health, social work, and other services to people who are terminally ill. Hospice care is often covered by Medicaid, and most hospice providers also offer services such as bereavement counseling for family members.
  • Check to see if a nearby community center, nonprofit, or religious organization has resources: Many churches, senior centers, community nonprofits, and other organizations have outreach programs that can help provide hot meals, housekeeping, and other services while you care for your loved one.

It can be difficult for family members and caregivers to watch loved ones experience the symptoms of terminal agitation.

If you or a loved one is terminally ill, be sure to take the time to take care of yourself. Bereavement counselling, peer counseling and other support services can help make the end of life less overwhelming and help caregivers take care of themselves and avoid burnout.

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