Active Dying Signs & Symptoms
Jump ahead to these answers:
- What Is the “Death Rattle”?
- What Is Rallying Before Death?
- What Does Comatose Mean?
- What Is Near-Death Awareness?
- Why Is My Elderly Parent Sleeping So Much?
- What Does Transitioning to Death Mean?
- What Is Ketosis and How Does It Affect the Dying Process?
- What Is a Kennedy Ulcer?
- What Are End-of-Life Visions?
- What Is the Pre-Active Phase of Dying?
- What Is Terminal Agitation or Terminal Restlessness?
What Is the “Death Rattle”?
July 7th, 2025“Death rattle” is the term used to describe the gurgling sound that many people make when they are actively dying. Although it can be distressing to family members and others at the bedside, it is simply the sound of air passing through saliva or mucus that has built up in the back of the person’s throat. Since swallowing or coughing is often difficult for those who are dying, these secretions collect in the airway and are difficult to clear.
This sound may be likened to the noise you hear when the last of liquid in a glass is sucked up through a straw.
Death rattle occurs in about half of people who are close to death, usually within the last 24 to 72 hours of life. Research confirms it is not a sign of respiratory distress for the person who is dying. Most often, this sound happens naturally when the patient is unconscious and unresponsive while breathing with an open mouth. However, it may be present at other times.
Death Rattle’s Effect on Families
Witnessing a death rattle can be unnerving for families. In a recent study, researchers looked at the impact of the experience on loved ones and found that a majority of relatives found the symptom to be upsetting. Their concerns included subjective issues (e.g., it sounds “horrific” or “inhuman” ) and objective concerns about the suffering of the dying person, whom several participants said seemed like they were “suffocating.” Many family members also felt the death rattle lasted an inordinate amount of time. As one participant said “… everybody is saying that when you hear this rattle, death is near…Two days then is a long time …”
It should be noted that not all families who were interviewed for this study found the death rattle burdensome, and the sample size was small (only 19 of 95 families agreed to be interviewed.) However, the death of a loved one is already traumatic. Healthcare providers should seek solutions to ease the suffering of family members to the greatest extent possible during this difficult time.
In that regard, education is a key component of helping family members cope. For example, bedside nurses and hospice staff can reassure the family that the patient is not suffering despite the disturbing sound. However, if the family is in severe distress, providers can try medications that may reduce saliva production and relieve the death rattle a bit. Anticholinergic drugs such as atropine and scopolamine are often used for this purpose, although their efficacy varies significantly. There is also concern among some clinicians that their use may induce unpleasant side effects for the dying patient, such as dry mouth, urinary retention and confusion. However, it has not been determined that patients in the final stages of dying actually experience these effects.
Fostering better understanding for families
While healthcare providers grapple with the challenge of helping loved ones cope with the death of their loved one, some end-of-life clinicians have taken to social media to try to educate the public about what it’s like to watch a loved one die. HOSPICE NURSE JULIE, for example, offers a video on her YouTube channel that demonstrates the death rattle and attempts to clarify what the sound means. We invite you to watch the video if you would like to learn more.
Sources
“Death Rattle”. National Cancer Institute. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/death-rattle
“Death rattle is not associated with patient respiratory distress: is pharmacologic treatment indicated?” Journal of Palliative Medicine. https://pubmed.ncbi.nlm.nih.gov/24047451/
“Understanding relatives’ experience of death rattle”. BMC Psychology. https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-020-00431-3
“Atropine”. StatPearls. https://www.ncbi.nlm.nih.gov/books/NBK470551/
“Scopolamine Transdermal Patch”. Medline Plus. https://medlineplus.gov/druginfo/meds/a682509.html
“Assuaging listener distress from patient death rattle”. Annals of Palliative Medicine. https://apm.amegroups.org/article/view/21469/22764
What Is Rallying Before Death?
July 7th, 2025Rallying before death, sometimes called a death rally or terminal lucidity, refers to a phenomenon where a dying person experiences mental clarity or a sudden burst of energy before death. Some individuals may seem physically stronger and take an interest in eating and drinking again, whereas others may seem more aware of their surroundings or express a desire to make plans. It is not uncommon for people who are rallying before death to start searching for their belongings, discuss funeral planning, try to make amends with those with whom they have strained relationships, or even request to start drafting important end-of-life documents. The period of rallying may last for moments or even days.
Families and loved ones of those who are dying are frequently uncertain of the implications associated with this sudden renewed energy. Although it is often a key indicator that death is approaching, many people become hopeful that it means their loved one is feeling better and may recover, therefore delaying death. It is in these moments that it can be helpful to talk with hospice staff or a loved one’s care team to gain greater insight into the significance of terminal lucidity and what it may mean for the remainder of the time before death.
There are many physiological, psychological, and spiritual theories regarding what causes people to rally before death. However, to date, no in-depth research exists confirming them since such research is limited by ethical concerns. Although the exact reasons remain unknown, it is a phenomenon that can provide a final opportunity for dying individuals to gain closure in relationships, reflect on their lives, and say goodbye to loved ones.
Sources
“When Loved Ones Rally Before Death”. Aging Care. https://www.agingcare.com/articles/when-loved-ones-rally-before-death-185452.htm
“The Mystery of End-of-Life Rallies”. New York Times. https://www.nytimes.com/2018/07/24/well/the-mystery-of-end-of-life-rallies.html
What Does Comatose Mean?
July 7th, 2025Comatose refers to a state of deep unconsciousness where your loved one has become unresponsive. When someone becomes unconscious when they are nearing the end of life, it typically means that they are approaching death. Your loved one will not be able to open their eyes, communicate, respond to touch, or awaken from this state of unconsciousness. Depending on how your loved one’s brain has been affected, they may also need a respirator to continue breathing. Common symptoms of a coma can include:
- Closed eyes
- Irregular breathing
- No response to painful stimuli
- No response from limbs
- Depressed brainstem reflexes (i.e., pupils do not respond to light exposure)
There are many potential causes of a coma. The cause of your loved one’s comatose state will likely depend on their medical history and the circumstances surrounding their health. Common causes of a coma may be:
- Head trauma
- Brain hemorrhages
- Swelling of the brain
- Lack of oxygen
- Poison
- Endocrine disorders (diabetes or hypothyroidism)
You may notice that your loved one may have very slight and spontaneous movement in their limbs or their fingers. These are reflex movements and are generally infrequent. It is important to understand that although it is possible to recover from a coma in certain circumstances, some individuals who are in a coma never regain consciousness and transition into a vegetative state or die. Many individuals who become comatose either in hospice or when they are nearing the end of life will transition toward death.
It is important to understand that the outcome of a coma will vary by case. Identifying the cause of the coma and any other contributing factors can provide additional insight into potential chances for recovery. Ultimately, discussing your loved one’s prognosis with their healthcare provider will be necessary to gain a better understanding of their treatment plan and any recommendations.
Sources
“When death is near: Signs and symptoms”. Hospice Foundation of America. https://hospicefoundation.org/when-death-is-near-signs-and-symptoms/
“Coma”. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/coma/symptoms-causes/syc-20371099
“Coma.” eMedicine Health. https://www.emedicinehealth.com/coma/article_em.htm
What Is Near-Death Awareness?
July 7th, 2025Near death awareness (NDA) refers to a phenomenon where individuals approaching the end of life begin to express a heightened awareness of their impending death. This heightened awareness often happens within the final week, days, or hours of life. During this period, individuals may find that new perceptions and interactions begin to emerge as they draw closer to their death. Perceptions and interactions that are common in near-death awareness may include:
- Seeing loved ones who have died
- Feeling more connected to a spiritual presence
- A greater sensation of peace
- Seeing religious figures or God
- Seeing another realm (i.e., paradise, heaven, etc)
- Knowledge of when they will die
Individuals who are experiencing near death awareness may communicate with the presence of someone who has died or may actively describe the surroundings of other realms that are not visible to those who are present in the room with them. It is not uncommon for them to make special requests during these interactions. Some individuals may begin to use more imaginative or visionary language regarding their death. They may describe that they are preparing to go on a trip or that they are going to be traveling soon to reunite with a loved one. Although many people report a greater sense of peace, some people experience heightened anxiety and distress.
It is important for caregivers and loved ones to understand the phenomenon of near death awareness since it can enable them to provide more supportive end-of-life care. For example, creating a compassionate environment that encourages the dying person to share their experiences allows loved ones and caregivers to validate their emotions and further promote a sense of peace. Ultimately, approaching near-death awareness more intuitively and respecting the experiences involved can lead to greater support of the physical, emotional, and spiritual aspects of dying.
Sources
“When Death is Near: Signs & Symptoms”. Hospice Foundation of America. https://hospicefoundation.org/when-death-is-near-signs-and-symptoms/
“What is Near Death Awareness and How Do I Respond?” Everyone Dies. https://every1dies.org/2021/what-is-near-death-awareness-and-how-do-i-respond/
Why Is My Elderly Parent Sleeping So Much?
July 7th, 2025Although there are several reasons unrelated to death and dying that may cause an elderly parent to sleep more than usual, increased sleep is also common at the end of life, and can emerge as early as 3 months prior to death. Individuals who are actively dying or approaching the end of life tend to experience general fatigue due to lower energy. This means that even if an elderly parent is sleeping more than usual, they may also remain drowsy during waking hours or may mention that they feel very tired. Some individuals may experience varying levels of consciousness throughout the day for this same reason.
Generally speaking, it is normal for dying individuals to sleep more frequently and for longer durations. They may also become more difficult to wake when they have fallen asleep or may fall asleep in settings or situations that would normally be uncommon, such as sleeping while sitting at the table for dinner. Since sleeping patterns can change significantly, this can also mean that they are awake during hours when they would usually be sleeping. However, it is important to note that increased sleep doesn’t always mean that your elderly parent is dying, since there are other indicators or symptoms that generally need to be present.
In general, aging often decreases the amount of restful sleep that individuals experience, and that may make seniors and elderly individuals feel substantially more tired throughout the day. Changes in sleep patterns can also occur due to chronic health conditions or unpleasant side effects from the medications that are used to manage those conditions. Some common examples of conditions that can negatively impact sleep include Alzheimer’s disease, dementia, sleep apnea, depression, PTSD, and anxiety. Additionally, ineffective pain management can make it very difficult to achieve restful sleep even if someone is quite tired. Contact a healthcare provider if changes to sleep patterns and frequency begin to disrupt daily routines or seem to be a cause for concern.
Sources
“What to Expect When Your Loved One Is Dying”. WebMD. https://www.webmd.com/palliative-care/journeys-end-active-dying
“Early and late signs that precede dying among older persons in nursing homes: the multidisciplinary team’s perspective”. BMC Geriatrics. https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-018-0825-0
“Why Does My Elderly Loved One Sleep All Day?” Aging Care. https://www.agingcare.com/articles/reasons-elderly-sleep-all-day-156606.htm
What Does Transitioning to Death Mean?
July 7th, 2025Transitioning to death refers to the initial phase when your loved one’s health begins to decline and shift into active dying. Although the length of time associated with the dying process can vary for everyone, most individuals will die within a matter of days or hours once they have transitioned into active dying. During this time, your loved one’s body will change as certain functions and organs begin to shut down. These changes can manifest in different ways, but some of the most common symptoms observed in transitioning to death include:
- Increased confusion or restlessness
- Decreased appetite and thirst
- Increased drowsiness
- Difficulty swallowing
- Breathing changes
- Bladder and bowel changes
- Changes in skin color
- Changes in temperature
- Increased agitation
- Communicating with deceased loved ones or having visions
- Swollen ankles or feet
- Increased pain or distress
- Secretion build-up in mouth or throat
- Audible “rattling” sound from throat
While physical changes and symptoms are often primary indicators that someone is transitioning to death, there are other indicators as well. People who are dying often experience emotional, mental, and spiritual changes. Depending on the level of awareness that your loved one can maintain during this phase, they may experience emotions such as anxiety, fear, peace, or acceptance. Some individuals express feeling more deeply connected to a higher power or divinity, while others share visions of different places and people who previously died. It is common for most people to reflect on the personal significance and meaning of their lives and the experiences they have had.
It is important to understand that factors such as an individual’s overall health, the potential cause of their death, and their preferences and beliefs can all influence the experience of transitioning to death. Since transitioning can range from hours to days, it is crucial to have consistent care and support throughout the process to ensure your loved one is as comfortable as possible. While transitioning to death is a deeply personal and meaningful period to share with your loved one, it is often very challenging to observe. As such, working together closely with a care team or other healthcare professionals as well as family members and loved ones can ensure that you maintain a solid support system while emphasizing a peaceful transition for your loved one.
Sources
“Hospice Care: Symptoms of Approaching Death.” University of Rochester Medical Center. https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=34&contentid=23507-1
“Signs of Approaching Death.” Hospice Foundation of America. https://hospicefoundation.org/Hospice-Care/Signs-of-Approaching-Death
“What is Transitioning in Hospice?” Guaranteed Hospice. https://www.guaranteedhospice.com/blog/what-is-transitioning-in-hospice
What Is Ketosis and How Does It Affect the Dying Process?
July 7th, 2025Ketosis is a metabolic state that occurs when a person hasn’t consumed enough carbohydrates for the body to transform into energy. Since the body is unable to burn carbohydrates, it begins to burn fat instead. When someone is actively dying and stops eating, their body will usually transition into a state of ketosis, which is characterized by several indicators, including:
- Loss of appetite
- Fatigue
- Dry mouth
- Decreased urination
- Bad breath
- Diarrhea or constipation
- Weight loss
- Insomnia
It’s important to note that lack of appetite and weight loss may also be part of the body’s natural process of shutting down as the person approaches death. Ketosis may also cause increased thirst, although some individuals may experience loss of thirst in relation to loss of appetite.
When a loved one with a terminal illness begins to express a lack of interest in eating or drinking, this is often the first sign that their body is slowly beginning its transition toward death. This can be difficult for family and loved ones to accept initially, and so they may begin to find creative ways to incentivize eating. This is sometimes achieved by offering a favorite snack or beverage that wouldn’t normally be a part of a balanced diet. While this attempt to encourage eating can work sometimes, it is generally a temporary solution and eventually ceases to prevent the recurrent loss of appetite.
One concern that often arises in these scenarios is the fear that a loved one will starve to death or die from dehydration since they aren’t interested in food or water anymore. They may also begin to worry that their loved one is uncomfortable since the tendency is to associate a lack of food with hunger pangs. However, in a state of ketosis at the end of life, much of the body’s processes are shutting down. Suppression of appetite typically occurs in conjunction with suppression of hunger pangs, and the brain starts releasing endorphins to block pain. Ketosis may even produce a sense of euphoria or sleepiness as death becomes more imminent, which ultimately helps them to feel more comfortable and at peace prior to death.
Sources
“Ketosis”. Cleveland Clinic. https://my.clevelandclinic.org/health/articles/24003-ketosis
“Sign of Impending Death in Hospice: Loss of Appetite”. Suncrest Hospice. https://www.suncrestcare.com/sign-of-impending-death-in-hospice-loss-of-appetite/
“Diminished Appetite at End of Life”. Today’s Geriatric Medicine. https://www.todaysgeriatricmedicine.com/archive/JA22p14.shtml
“Loss of Appetite When Dying Explained”. Cura-HPC. https://www.curahpc.com/blog/posts/view/148/loss-of-appetite-when-dying-explained
“I’m a nurse – here’s what really happens just before you die and why you shouldn’t be scared”. The Sun. https://www.the-sun.com/health/7763951/nurse-death-ketosis-euphoric/
What Is a Kennedy Ulcer?
July 7th, 2025A Kennedy Ulcer, or Kennedy terminal ulcer, is a sore that rapidly develops and progresses as terminally ill patients near the end of life. Kennedy ulcers can appear during a patient’s last days, mainly at the sacrum, or tailbone. Their onset is very swift. They first appear as a small spot in the morning, then fully progress into large black blister-type sores by mid-afternoon that same day. Kennedy ulcers are sometimes called “3:30 Syndrome” by nurses and physicians, reflecting the time of day they seem to develop.
This type of ulcer was initially established as its own category of wound in 1989 by nurse practitioner Karen Lou Kennedy. While their exact cause remains unknown, medical experts believe that Kennedy ulcers develop due to tissue death. The skin is the body’s largest organ, so not unlike other organs, skin cells can shut down and fail near the end of life.
Kennedy ulcers are not bedsores, which are ulcers that develop due to continuous pressure on an area of the body for a prolonged period of time. Also called decubitus ulcers or pressure sores, bedsores occur due to compromised circulation and follow a typical pattern of tissue injury once they occur. Kennedy ulcers look very similar, but when examined under a microscope, the skin cells are intact. According to the National Pressure Injury Advisory Panel, further studies are needed to better understand why they occur.
Symptoms of a Kennedy Ulcer
To date, there is little research available on what causes Kennedy ulcers or how to differentiate them from a bedsore. However, they differ so greatly in their clinical presentation from any other type of ulcer that nurses who care for the dying have outlined some ways to recognize them. These include the following criteria:
- Rapid Onset: a blister-like wound that typically develops within hours of onset
- Location: most commonly develops on the sacrum (low end of spine) or tailbone (coccyx). However, they may also appear on other areas of the body, including the calf, heels, arms, or elbows.
- Irregular Shape: most often described as pear-shaped or shaped like a butterfly
- Color: bruise-like shades of black, yellow, or red that darken quickly after onset
- Surrounding appearance: The skin surrounding the discolored area may be soft to the touch or loose.
Treatment and Prevention
Unlike bedsores, which can usually be prevented with excellent skin care and careful attention to positioning, Kennedy ulcers are thought to be unavoidable. They typically occur very shortly before a patient dies, so there’s little that can be done to help them heal. These ulcers can be painful, so treatment is aimed at patient comfort. Preventing pressure on the sore with special bandages, cushions, or positioning may help, and pain medicine is indicated if the patient is in distress.
Importantly, caregivers should understand that nothing they did or did not do caused the ulcer to develop. Rather, like other signs of active dying, a Kennedy ulcer is a signal that the person’s body is shutting down.
Sources
“What Is Kennedy Terminal Ulcer?” WebMD. https://www.webmd.com/skin-problems-and-treatments/what-is-kennedy-terminal-ulcer
“NPIAP Tackles Issue of Skin Changes in Actively Dying Patients”. National Pressure Injury Advisory Panel. https://npiap.com/news/590421/NPIAP-Tackles-Issue-of-Skin-Changes-in-Actively-Dying-Patients.htm
“Bedsore”. National Cancer Institute. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/bedsore
What Are End-of-Life Visions?
July 7th, 2025End-of-life visions or deathbed visions are paranormal experiences in which a dying person sees something that isn’t apparent to others in the room. According to many experts in hospice and palliative care, they are extremely common and may occur right before death or weeks earlier. The visions are often of family members who have died (in one study, reported by Marilyn A. Mendoza, Ph.D., in Psychology Today, 57% of deathbed visions fell into this category). The person seen in the vision is very often the patient’s mother or father. Visions of spiritual or religious symbols, such as angels and deities, are also quite common, even in people who have no particular religious beliefs, Mendoza said. Almost universally, the visions are reported as comforting by the people who have experienced them.
Deathbed visions may also be accompanied by extremely lucid dreaming. According to a study conducted by Dr. Christopher Kerr, M.D., Ph.D., at the Center for Hospice & Palliative Care in Buffalo, New York, nearly 90% of dying patients have at least one dream that they describe as more vivid than their normal dreams. Sometimes, Kerr reports, these dreams seem so real that they are perceived as waking reality.
Most of the dying people Kerr interviewed reported dreams of reuniting with loved ones who had already died, or getting ready to travel somewhere. A smaller number reported dreaming about something that had happened in their past. According to Kerr, these dreams very often had significant emotional significance to the dying, most of whom found them both comforting and meaningful.
Interestingly, recent animal studies show that the brain becomes highly synchronized in the moments before death. According to Jimo Borjigin, Ph.D., a neuroscientist at the University of Michigan, this synchronization is known as “coherence” and is associated with high-level, focused, cognitive activity in the human brain. This increased coherence in the dying brain seems to be the result of a powerful surge of neurochemicals that occurs (at least in animals) right before death. This surge may be behind the bright lights and sudden, intense clarity of thought that cardiac arrest survivors report, Borjigin believes.
Sources
“Deathbed Visions: Part I”. Psychology Today. https://www.psychologytoday.com/us/blog/understanding-grief/201610/deathbed-visions-part-i
“End-of-life dreams and visions: a longitudinal study of hospice patients’ experiences”. Journal of Palliative Medicine. https://pubmed.ncbi.nlm.nih.gov/24410369/
“What It Feels Like to Die”. The Atlantic. https://www.theatlantic.com/health/archive/2016/09/what-it-feels-like-to-die/499319/
What Is the Pre-Active Phase of Dying?
July 7th, 2025The pre-active phase of dying is a period of several weeks or perhaps a month that precedes death.
During the preactive phase of dying, the body is beginning to shut down, and digestion, brain and kidney function begin to deteriorate. These functions typically slow down in a predictable pattern, says James Hallenback, a palliative care physician at Stanford University, in his book “Palliative Care Perspectives.” “First hunger and then thirst are lost,” Hallenback writes. “Speech is lost next, followed by vision. The last senses to go are usually hearing and touch,” he adds.
Physical Signs of Pre-Active Dying
- Decreased food and fluid intake due to the natural diminishment of hunger and thirst
- Lower temperature and blood pressure
- Pale skin
- Difficulty swallowing, especially pills. Many people at this stage of dying need to take their oral medicines in liquid form. Medicines that are not indicated for comfort are usually stopped at this time.
- Decreased urine output and fewer bowel movements
- Swelling of the hands or feet due to diminished kidney function and the accumulation of fluid in the extremities.
- Increased sleepiness, less interaction with loved ones
- Confusion, agitation or restlessness. This may include behaviors such as “picking” at the covers, thrashing about, or trying to get out of bed without help.
- Breathing changes. Breathing may initially be rapid and shallow or irregular and labored.
- Slow wound healing. The skin is particularly vulnerable during this time, and bedsores can happen seemingly overnight. Frequent turning, gentle massage and soothing skin lotions can help prevent the skin from breaking down.
Behavioral and Cognitive Signs of Pre-Active Dying
The brain, like the rest of the body, doesn’t die all at once. As different parts of the brain begin to fail, the dying person may experience hallucinations or especially vivid dreams. It is not uncommon during this period for the dying person to say they have seen loved ones who already died or have “conversations” with the dead. Additionally, the person may:
- Verbally acknowledge that they are dying
- Ask to see family members and loved ones one last time.
- Withdraw from those around them and seem to be “in another world”
- Speak incoherently, often to no one in particular
- Near death awareness — an acute sensitivity to the reality that death is near
These behaviors can be alarming to loved ones, but they are very common and merely signs that the brain is beginning to shut down.
Additionally, some individuals will experience a period of decreased social interaction before the physical changes associated with pre-active dying begin. This is typically a time when the person begins to consider their mortality and accept that death is near. Many people begin to withdraw from friends and loved ones and may even refuse visitors during this time as they come to terms with the reality that their life is coming to an end. Some may perform a formal or informal life review, in which they recollect and evaluate important memories and events from their lives. As part of this process, some dying persons will also work towards a sense of closure by reaching out to loved ones to reconcile, express love and gratitude, ask for forgiveness, and to remedy old hurts.
Sources
“Life Review and Life-Story Work”. The Encyclopedia of Adulthood and Aging. https://onlinelibrary.wiley.com/doi/full/10.1002/9781118521373.wbeaa209
What Is Terminal Agitation or Terminal Restlessness?
July 7th, 2025Terminal agitation is a state of restlessness that may occur as a terminally ill patient nears the end of life. This type of restlessness most often occurs within the last few days prior to death, but may also appear sooner. It can be brought on by emotional or physical distress caused by worry or fear of death, advanced stages of disease, or sometimes medications.
Symptoms can differ and vary in intensity, but the most common indicators of terminal agitation include some combination of the following:
- Confusion – disoriented, easily distracted; an inability to concentrate
- Anger – may exude aggressive behavior or outbursts like yelling or shouting
- Nervous fidgeting – unable to relax or settle down; may pull blankets off or tubes out
- Sleep disturbances – changes to sleep patterns; may sleep during day and be up at night
- Unusual behaviors – abnormal personality traits, short-term memory problems
Terminal Delirium Versus Terminal Agitation
In more severe cases of terminal agitation, delirium is present. This means that the person displays an inability to focus or respond to cues while appearing withdrawn. They may have trouble recalling or understanding words or ramble nonsensically. Delirium can come on quickly, usually within hours or days. The degree of symptoms may be worse at night or in unfamiliar settings such as a hospital.
Someone with delirium generally displays more intense behavioral changes that may include some or all of the following:
- Signs of anxiety, distrust, or fear
- Extreme states of elation or anger
- Combative or restless behavior
- Hallucinations or delusions
Managing Terminal Agitation and Delirium
In most cases, initial management of terminal agitation is aimed at controlling symptoms of restlessness and anxiety. Sometimes simply touching the person, smoothing their hair or holding their hand can help them calm down. Playing soft music or singing and talking to the person in a soft, calm voice may also help. Weighted blankets may be beneficial as well.
If agitation persists or becomes severe, caregivers should notify the hospice provider so an assessment can be made. Sometimes what appears to be terminal agitation is actually a physical issue, such as a distended bladder, fever, severe dehydration, oxygen deprivation, constipation, or undertreated physical pain. It may also be related to medication side effects, especially if new medicines have been recently introduced. Psychosocial issues may also play a role, especially if the dying person has unresolved interpersonal conflicts or spiritual concerns.
For some patients, medications are necessary to control the symptoms of terminal agitation and keep the person safe. If caregivers suspect the person is in pain, pain medicine such as morphine can be initiated or increased. Benzodiazepines, such as lorazepam (Ativan) or midazolam (Versed) may also be useful. In cases of terminal delirium, an antipsychotic such as haloperidol (Haldol) or an atypical antipsychotic such as olanzapine, risperidone, or quetiapine may be used. Unfortunately, all of these medications may sedate the patient significantly, making it difficult, if not impossible, for family and loved ones to communicate with the dying person in the days or hours before death. However, the benefit of keeping the person quiet and comfortable often outweighs that risk.
Sources
“Understanding and Recognizing Terminal Restlessness”. Heathline. https://www.healthline.com/health/terminal-restlessness
“Delirium”. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/delirium/symptoms-causes/syc-20371386
“What is Terminal Agitation? How Hospice Treats Terminal Restlessness”. Amedisys. https://resources.amedisys.com/treating-terminal-agitation
“Benzodiazepines”. Drugs.com. https://www.drugs.com/drug-class/benzodiazepines.html
“Olanzapine”. Medline Plus. https://medlineplus.gov/druginfo/meds/a601213.html
“Risperidone”. Medline Plus. https://medlineplus.gov/druginfo/meds/a694015.html
“Quetiapine”. Medline Plus. https://medlineplus.gov/druginfo/meds/a698019.html “Haloperidol”. StatPearls. https://www.ncbi.nlm.nih.gov/books/NBK560892/
