Most families picture the end of life as quieter: more sleep, fewer words, a gradual easing. And sometimes it is. But there is another experience that can arrive without warning, often in the final days or even final hours, that can feel like the exact opposite of “peaceful.” A loved one who was tired and calm may suddenly seem distressed. They may pull at blankets, reach for things that aren’t there, try to climb out of bed, or look at you with a frightened expression that doesn’t match the room you’re standing in.
If you’re witnessing this, you are not alone, and you are not doing something wrong. Terminal agitation, sometimes called terminal restlessness or end of life delirium, is a cluster of symptoms that can happen as the body and brain are under strain near the end of life. It can be deeply upsetting to watch, but there are practical, comfort-centered steps that often help, and there are clear moments when it’s time to call hospice for stronger symptom support.
This guide is educational, not medical advice. Your hospice team is your best partner for medication questions, safety planning, and decisions about what’s reversible and what’s best managed with comfort-focused care.
What terminal agitation is (and what it is not)
Terminal agitation usually refers to restless, distressed behaviors that can occur as someone nears death. A person may fidget, pick at sheets, kick their legs, attempt to get up, or seem suddenly irritable or fearful. The Cleveland Clinic describes it as behavior changes that may happen in the days leading up to death, including picking at bed linens, pulling at lines, or showing an uncharacteristic shift in mood and personality.
Clinically, many of these experiences fall under delirium, which is an acute change in attention and thinking that can fluctuate over hours. The Palliative Care Network of Wisconsin notes that delirium can look “hyperactive” (agitated, restless) or “hypoactive” (quiet confusion, withdrawal), and that “confusion” is a vague word that can mean many different things. In real homes, families may describe it more simply as confusion before death or “they aren’t themselves.”
One important reassurance: hospice agitation does not mean your loved one is choosing to be difficult, angry, or ungrateful. Delirium is a symptom of strain on the brain and body. It can also be the brain’s response to pain, low oxygen, infection, medication side effects, dehydration, constipation, or sensory overload. It is not a moral failure, and it is not a verdict on the love between you.
How common is end-of-life delirium?
Delirium becomes more common as illness advances and the body becomes more fragile. According to the American Academy of Family Physicians, delirium occurs in a significant portion of people with advanced illness and can be present “in up to 88% of persons with a terminal illness in the last days of life.” That statistic isn’t meant to frighten you. It’s meant to normalize what you may be seeing and to remind you that distressing behavior near the end of life is often a medical symptom with comfort-focused options.
Signs and symptoms families often notice
Restlessness before death can show up in different ways, and it often fluctuates. A person may have moments of relative calm and then a sudden wave of agitation, especially at night or after a change in medications, environment, or caregiving routine. The Agrace hospice education guide lists common end-of-life behaviors families may observe, including moaning or crying out, pulling or picking at clothes or bed linens, and trying to get out of bed repeatedly.
Other signs can include disorientation (not recognizing where they are), seeing or hearing things that others don’t, new fearfulness, repetitive motions, or urgent attempts to “go somewhere.” Sometimes the words don’t make sense. Sometimes the person is silent but visibly distressed, with tense muscles, grimacing, or an alarmed look in their eyes.
The most helpful frame is this: you are not trying to “win an argument” with delirium. You are trying to reduce distress, support safety, and ask for medical help when the symptoms suggest treatable triggers or uncontrolled discomfort.
Common causes and triggers
Families often want one simple reason. In reality, end of life delirium is usually multifactorial. The same person may be dealing with pain, constipation, dehydration, and medication changes all at once. That’s why hospice teams focus on patterns and triggers, not perfection.
The Cleveland Clinic describes several contributors that can worsen or trigger terminal agitation, including infections and fever, anemia, dehydration, emotional distress, opioid-related delirium, bowel and bladder issues like constipation or urinary retention, and uncontrolled pain. The Palliative Care Network of Wisconsin similarly lists common contributors such as infection, medication effects (including sedatives and opioids), metabolic changes, low oxygen, dehydration, uncontrolled pain, immobility, and lack of sleep.
There are also environmental triggers that can be surprisingly powerful. The Marie Curie palliative care knowledge zone emphasizes that agitation can be distressing and is not inevitable, and that many potential causes can be reversible. In homes, “reversible” sometimes means a simple comfort fix: a quieter room, fewer people talking at once, a gentle light instead of harsh overhead bulbs, or removing a confusing television soundtrack in the background.
When you’re trying to make sense of what you’re seeing, it can help to think in two lanes at once: medical comfort and environmental calm. Medical comfort triggers that are commonly involved include pain that the person can’t describe clearly, constipation or urinary retention, medication side effects or medication timing changes, dehydration, fever, infection or low oxygen, and sleep disruption, especially a day-night reversal. Environmental and emotional triggers can include overstimulation such as too many visitors, too much noise or too much touching, unfamiliar caregivers or sudden changes in routine, bright light or a confusing TV or radio soundtrack, and fear or anxiety that creates the urgent sense of “needing to do something” without knowing what.
None of this is meant to turn you into a clinician. It’s meant to give you language when you call hospice: “They seem more agitated after the evening meds,” or “They keep trying to stand and I wonder if they need to urinate,” or “It got worse after visitors left and the house got loud.” Specific observations help hospice respond faster and more precisely.
Comfort measures that often help in the moment
When terminal restlessness begins, families often reach for words first: “Please stop,” “You’re okay,” “Don’t do that.” And sometimes reassurance helps. But comfort is often more physical and environmental than verbal. Think: quieter, dimmer, simpler, steadier.
The Agrace guide suggests straightforward, nonpharmacologic support like keeping the room peaceful and quiet, turning down bright lights, and speaking in a calm voice while explaining what you are doing. The Palliative Care Network of Wisconsin highlights environmental and reorientation strategies, such as altering sensory stimulation (for example, turning off the TV if it’s confusing), having familiar people visit, and offering gentle reminders of time and place.
In a real home, that can look like this: one calm person at the bedside, a softer light, fewer questions, fewer competing voices, and a predictable rhythm.
Calming techniques hospice teams commonly recommend
These comfort measures are not about forcing calm. They’re about making calm more possible. Often the most helpful first step is lowering stimulation by dimming lights, reducing noise, turning off the television, and limiting visitors to one or two steady people at a time. A calm, simple voice can also help—short sentences, a slow pace, and gentle reassurance. If your loved one is frightened, it may help to validate the feeling without arguing about reality, saying something like, “I’m here. You’re safe. I won’t leave you.” Some people find steady touch soothing, such as holding a hand, a light shoulder touch, or gentle lotion on hands and feet; for others, touch can worsen agitation, so calm presence without extra contact may be better. Practical comfort adjustments matter too, including repositioning with pillows, loosening restrictive clothing, checking for a wet brief or uncomfortable bedding, and making sure the room temperature feels right. Quiet support for basic needs like mouth care, lip moisturizer, and small sips if appropriate and allowed by the care team can also reduce distress, because dry mouth can look like agitation.
If you want a broader, practical roadmap for what families can do when symptoms change quickly near the end of life, Funeral.com’s guide What to Do When Death Is Near: Comfort, Logistics, and Family Communication can help you feel less alone in the “what now?” moments.
Safety-first comfort: preventing falls, injuries, and panic
Hospice agitation can create real safety risks, especially if your loved one is trying to stand or walk while weak, dizzy, or disoriented. Safety planning is part of comfort planning. A fall can cause pain, fear, and a cascade of new symptoms.
Start with the simplest safety supports. Keep pathways clear. Lower the bed if possible. Place essential items within reach. If your loved one is trying to get up, ask hospice about safe transfer strategies and equipment. Sometimes the safest solution is not “hold them down,” but “set the room up so they can’t hurt themselves.” Pillows placed strategically, a bedside commode if appropriate, and a caregiver chair close to the bed can reduce frantic movement and injuries.
Most importantly: do not attempt risky lifting alone. If you are physically strained, exhausted, or unsure, call hospice for coaching. One of the most stabilizing resources families can have is a clear understanding of what hospice will handle clinically and what families typically handle day to day. Funeral.com’s guide What Hospice Actually Does at Home (and What Families Still Handle) lays that out in plain language, including how symptom management support usually works.
When to call hospice (and what to say)
Families sometimes hesitate because they don’t want to bother anyone, especially at night. But medications for terminal agitation and symptom adjustments are exactly what hospice is built for. The Marie Curie guidance emphasizes letting the medical team know quickly because they may be able to find and treat a reversible cause.
It’s a good idea to call hospice promptly if the agitation is new, severe, or escalating quickly; if your loved one is trying to get out of bed repeatedly or seems at high risk of falling; if you suspect pain, constipation, urinary retention, fever, or medication side effects; if you cannot keep the environment calm or the caregiver situation is becoming unsafe; or if you feel frightened, overwhelmed, or unsure what to do next.
When you call, share concrete observations. Mention what you see (“picking at sheets,” “trying to stand every few minutes”), when it started, what changed in the last 24 hours (new meds, missed bowel movement, new visitors, a move to a different room), and what has helped or worsened it. Those details help hospice decide whether to adjust medications, treat a reversible cause, or consider a higher level of care for symptom control.
If your family is weighing whether symptoms can still be managed safely at home, Funeral.com’s guide In-Home Hospice vs Inpatient Hospice: How Families Decide (Without Guessing) explains how families often make that decision when agitation or delirium becomes difficult to control despite adjustments.
Medication support and symptom management
Families often ask, “What medication stops this?” The truth is more nuanced. Sometimes the best relief comes from treating a trigger (pain, constipation, urinary retention, infection). Other times, comfort-focused medications are needed because the delirium itself is causing suffering or safety risk.
The Cleveland Clinic notes that medical management may include adjusting current medications, treating contributing conditions, or using sedatives or antipsychotic medications to reduce distress. The Palliative Care Network of Wisconsin emphasizes that non-drug approaches are a mainstay, and that medication decisions depend on the person’s goals of care, symptom severity, and whether the delirium is judged to be a source of suffering. They also summarize evidence suggesting that, in some situations of agitated delirium at the end of life, adding a benzodiazepine to scheduled antipsychotic treatment reduced agitation more than antipsychotic treatment alone.
What matters most for families is not memorizing drug names, but partnering with hospice around two questions: “Are we missing a reversible cause?” and “Is this distress causing suffering or danger that we should treat more aggressively?” If the goal is comfort and your loved one is suffering, it is appropriate to ask hospice directly about medications for terminal agitation, potential side effects, and what the plan is if symptoms break through at night.
If you are not sure whether a symptom is hospice-related, a simple habit can reduce confusion and panic: call hospice first whenever it is safe. Funeral.com’s guide Hospice and the Hospital: When Medicare Still Covers ER Visits and Admissions explains how coordination works and why calling hospice first can protect both comfort and clarity.
Supporting the caregiver through the hardest nights
Family caregiver tips for this chapter often sound almost too simple, but they matter: take shifts, lower expectations, and accept help before you collapse. Terminal agitation is especially exhausting because it can feel like constant vigilance. The body gets tired, and the mind keeps scanning: “Are they okay? Will they fall? Is this pain? Is this fear?”
Try to build a small, steady team. Even one other person who can sit with your loved one for an hour so you can rest can change the entire night. If you’re doing this alone, tell hospice. Sometimes hospice can adjust visit frequency, provide additional coaching, or help you consider respite or inpatient symptom management when home is no longer safe or sustainable.
If your loved one’s illness includes dementia or cognitive decline, agitation and restlessness can be particularly intense and confusing for families. Funeral.com’s guide Hospice for Dementia: What Changes, What Helps, and What to Expect Over Time discusses common triggers and how hospice teams often help families reduce distress through routine and environment changes.
A gentle note about planning while you’re focused on comfort
When someone you love is experiencing terminal agitation, it can feel impossible to think about anything else. And you shouldn’t have to. Still, many families find that a small amount of practical planning reduces panic later and protects the present moment from being swallowed by logistics.
If you haven’t already, consider reading Funeral.com’s guide Home Hospice and Advance Care Planning: What Families Need to Know Before a Crisis. It can help you organize the “who calls whom” questions and clarify wishes in a way that supports comfort care. And when you feel ready, Home Hospice: What It Is, What It Covers, and How to Prepare can help you understand what hospice typically provides and what families can prepare at home so care feels steadier.
Finally, remember this: even when symptoms are hard, your presence still matters. Calm voice. Gentle touch. A familiar face. A room that feels safe. These are not small things. They are often the most powerful medicine a family can offer, alongside hospice’s clinical care.
