When someone is receiving hospice care, changes in mood, behavior, sleep, and awareness can sometimes become part of the journey. A loved one who was previously calm may begin appearing worried, unsettled, confused, or unable to get comfortable. They may move around more, pick at their clothing or bedding, reach into the air, or seem unusually anxious.
These changes can be difficult for families to understand, especially when they happen suddenly.
Restlessness and anxiety during hospice can have many possible causes. They may be connected to physical discomfort, changes in the body, difficulty breathing, pain, confusion, emotional distress, or the progression of a serious illness. In some cases, several factors may be happening at the same time.
Table of Contents
- Understanding Restlessness and Anxiety in Hospice
- Why Restlessness and Anxiety May Occur
- Restlessness, Confusion, and Changes Near the End of Life
- How Hospice Helps Manage Restlessness and Anxiety
- How Families Can Create a More Comfortable Environment
- When to Contact the Hospice Team
- ProCare Hospice of Nevada Is Here to Support Your Family
- Frequently Asked Questions
Understanding Restlessness and Anxiety in Hospice
Restlessness and anxiety are related, but they are not always the same.
Anxiety often involves feelings of fear, worry, uneasiness, or emotional distress. A patient who is able to communicate may say that they feel nervous, afraid, overwhelmed, or unable to relax.
For patients who are having difficulty communicating, anxiety may show through behavior instead.
Restlessness often appears more physically. A patient may continually change positions, move their hands or arms, pull at clothing or blankets, or appear unable to settle down.
Some possible signs of restlessness or anxiety include:
- Repeatedly shifting position
- Picking at sheets, blankets, or clothing
- Reaching into the air
- Repeated hand or arm movements
- Difficulty relaxing
- Increased agitation
- Changes in normal behavior
- Appearing unusually worried or tense
- Difficulty sleeping or resting
- Changes in mood or personality
- Increased confusion
- Seeming uncomfortable without being able to explain why
Not every patient will experience these changes, and they may look different from one person to another.
A patient may also become quieter or more withdrawn rather than visibly agitated. This is why changes from the person’s usual behavior can be important.
Caregivers do not need to figure out exactly what a behavior means before asking for help. If something has noticeably changed, the hospice team can help evaluate what is happening.
Anxiety May Be Physical and Emotional
It can be tempting to think of anxiety as purely emotional, but physical symptoms can influence how a person feels.
A patient who is struggling to breathe, experiencing pain, feeling nauseated, or unable to get comfortable may also become anxious.
Likewise, anxiety itself may make physical discomfort feel more intense.
Hospice care looks at the patient as a whole person rather than treating symptoms in isolation. Physical comfort, emotional well-being, relationships, personal beliefs, and the patient’s individual wishes can all play a role in the care plan.
Why Restlessness and Anxiety May Occur
There is not one single reason a hospice patient may become restless or anxious.
Serious illness can affect many parts of the body, and those changes may influence comfort, awareness, energy, breathing, and behavior.
Possible factors may include pain, breathing difficulties, physical discomfort, confusion, difficulty urinating, nausea, constipation, changes in circulation, or other effects of the patient’s illness.
A patient may also experience emotional distress related to changes in health, independence, communication, or daily routine.
Because there are many possible causes, it is important to let the hospice team know when a new symptom appears.
Pain and Discomfort
Pain is one possible reason a patient may have trouble relaxing.
Some patients can clearly describe where they hurt and what the pain feels like. Others may have difficulty communicating, particularly as illness progresses.
When a person cannot easily explain what they are feeling, behavior becomes an important form of communication.
A patient who is suddenly moving more, grimacing, resisting movement, or appearing agitated may be uncomfortable.
Hospice nurses can assess these changes and determine whether pain or another physical symptom may be contributing.
Difficulty Breathing
Breathing changes may also cause distress.
Shortness of breath can feel frightening, even when the patient understands what is happening. For someone who is already weak, confused, or anxious, difficulty breathing can be especially unsettling.
Depending on the patient’s care plan, comfort measures may include repositioning, elevating the head, medication, oxygen, or other support recommended by the care team.
Any new or worsening breathing difficulty should be reported to the hospice nurse.
Physical Needs
Sometimes discomfort may come from a need that is less obvious.
Constipation, nausea, vomiting, bladder discomfort, catheter concerns, or skin irritation may all affect a patient’s ability to rest comfortably.
A hospice assessment can help identify symptoms that may need attention.
This is another reason caregivers should share changes rather than assuming that agitation is simply an emotional response.
Restlessness, Confusion, and Changes Near the End of Life
As the body changes during advanced illness, awareness and behavior may change as well.
Some patients may become increasingly sleepy and spend less time awake. Others may become confused about where they are, what time it is, or who is around them.
A person may also become less interested in conversation, visitors, television, reading, or activities they previously enjoyed.
These changes do not follow the same timeline for every patient.
Some people experience them gradually. Others may change more quickly.
Understanding Delirium
Restlessness can sometimes occur alongside delirium.
Delirium may involve confusion, reduced awareness, difficulty focusing, or noticeable changes in behavior.
A patient who is experiencing delirium may appear disoriented or act differently than family members expect.
For example, a person may:
- Forget where they are
- Become confused about the time of day
- Have difficulty recognizing what is happening
- Seem unable to focus
- Speak about people or events that others do not see
- Pick at bedding or clothing
- Reach into the air
- Make repeated movements
Family members can gently identify themselves and offer simple reassurance without overwhelming the patient with questions or corrections.
Other Changes Near the End of Life
Restlessness or confusion may occur alongside other physical changes.
A patient may begin sleeping more, eating less, drinking less, or becoming increasingly weak.
Changes in circulation may cause the hands, feet, arms, or legs to feel cooler. Skin color may also change.
Breathing may become irregular. There may be periods of faster breathing followed by pauses.
Not every patient will experience every change.
Families should not feel that they need to determine exactly where their loved one is in the end-of-life process based on one symptom. The hospice team can provide guidance based on the individual’s overall condition.
How Hospice Helps Manage Restlessness and Anxiety
Hospice care is built around the individual needs of the patient.
Your ProCare Hospice of Nevada interdisciplinary team works together to support patients and their loved ones through some of these changes. The treatment team consists of physicians, nurse practitioners, nurse case managers, certified nursing assistants, social workers, spiritual care providers, and volunteers. Each member identifies, assesses, and works with their fellow team members to address any changes in restlessness and anxiety to adjust the care plan to maximize your loved one’s comfort. Making sure to communicate any changes to the members of your care team helps them promptly address any issues.
When restlessness, anxiety, confusion, or agitation develops, the patient’s nurse can assess what is happening and determine whether adjustments to the care plan may be appropriate.
Addressing Symptoms Early
Changes are often easier to address when the hospice team knows about them early.
Families should not wait until a patient becomes extremely uncomfortable before calling.
If the patient begins behaving differently, seems unusually anxious, cannot rest, or develops another concerning symptom, letting the hospice nurse know allows the team to respond sooner.
Depending on the situation, the care team may recommend changes to the patient’s environment, medications, positioning, symptom-management plan, or other comfort measures.
Caregivers should always follow the medication instructions provided by the care team and should not change medication doses without speaking with the hospice nurse or physician.
Comfort Goes Beyond Medication
Medication may be part of symptom management, but hospice care also recognizes the value of non-medical comfort measures.
For some patients, comfort may come from a quieter room, familiar music, a loved one’s voice, gentle touch, prayer, meditation, or simply having someone nearby.
What feels comforting to one person may not feel comforting to another.
Care should always reflect the patient’s preferences whenever possible.
How Families Can Create a More Comfortable Environment
Keep the Room Calm
Too much activity can sometimes make it harder for a restless or confused patient to relax.
Consider reducing unnecessary noise, limiting the number of people speaking at once, and keeping the room comfortable and familiar.
Soft lighting may also feel less overwhelming than a bright or busy environment.
Speak Slowly and Calmly
If a loved one seems confused, use a gentle voice.
Introduce yourself if necessary and keep explanations simple.
A calm tone can be reassuring even when the patient is not able to respond.
Offer Familiar Comforts
Familiar sounds, routines, and people may help create a feeling of safety.
Depending on the patient’s preferences, this could include:
- Favorite music
- Quiet conversation
- Reading aloud
- Prayer
- Meditation
- Holding hands
- Looking through photographs
- Sharing memories
- Sitting quietly together
There does not always need to be conversation.
Presence itself can be meaningful.
Respect the Patient’s Need for Rest
Patients often sleep more as illness progresses.
Families may naturally want to use every waking moment to talk or spend time together, but patients may not have the same energy they once did.
Allowing someone to rest can be an important form of care.
When the patient is awake and comfortable, families can use that time for conversation, connection, or simply being together.
Do Not Force Food, Fluids, or Activity
Appetite and energy often decrease during advanced illness.
A patient may no longer want the same amount of food or drink they previously enjoyed.
Trying to force eating, drinking, conversation, or activity may create additional discomfort.
Follow the patient’s cues and the recommendations provided by the hospice team.
Caregivers Need Support Too
Watching someone you love become restless, anxious, or confused can be emotionally difficult.
Caregivers may wonder whether they are doing enough or whether they should be responding differently.
Hospice care is designed to support families as well as patients.
You are not expected to know how to manage every change on your own.
Asking questions and calling the hospice team when something changes is part of the caregiving process.
When to Contact the Hospice Team
One of the most important things caregivers can do is communicate.
You do not need to wait for an emergency before calling hospice.
Contact the hospice team if you notice:
- Increasing anxiety
- New or worsening restlessness
- Significant confusion
- Difficulty breathing
- Shortness of breath
- Uncontrolled pain
- Nausea or vomiting
- Difficulty urinating
- Catheter problems
- A fall
- Emotional distress
- A sudden or unusual change in behavior
- Any symptom that concerns you
You can also call simply because you are unsure what you are seeing.
Describe what has changed, when you first noticed it, and anything else that seems different about the patient’s condition.
Hospice care also provides guidance outside normal office hours. Questions and symptoms do not always happen during the day, which is why access to support is so important.
For patients receiving care from ProCare Hospice of Nevada, our team can be reached at 702.380.8300 for questions and concerns.
ProCare Hospice of Nevada Is Here to Support Your Family
Restlessness and anxiety can be difficult parts of advanced illness, but families do not have to manage these changes by themselves.
A patient may become anxious because of physical discomfort. They may experience confusion as illness progresses. They may move more, sleep more, communicate differently, or have difficulty settling into a comfortable position.
Every patient’s experience is different.
The most important thing families can do is pay attention to changes, provide a calm and supportive presence, and stay in communication with the hospice team.
At ProCare Hospice of Nevada, our focus is helping patients remain as comfortable as possible while supporting the people who love and care for them. Our team provides medical, emotional, social, and spiritual support based on each patient’s individual needs, wishes, and goals.
If you are caring for someone with a life-limiting illness and have questions about hospice care, contact ProCare Hospice of Nevada at 702.380.8300.
Frequently Asked Questions
1. Is restlessness normal during hospice care?
Restlessness can occur during hospice care, particularly as a serious illness progresses, but it does not happen to every patient. It may appear as repeated movement, difficulty settling down, picking at bedding, reaching into the air, agitation, or other changes in behavior. Any new or increasing restlessness should be shared with the hospice nurse.
2. What can cause anxiety in a hospice patient?
Anxiety may have several possible causes. Pain, difficulty breathing, physical discomfort, confusion, emotional distress, and changes related to serious illness may all contribute. Because different symptoms can overlap, the hospice team can assess the patient’s overall condition and determine what support may be appropriate.
3. What is the difference between restlessness and delirium?
Restlessness usually describes physical or behavioral difficulty settling down, while delirium involves changes in awareness, thinking, or attention. A patient experiencing delirium may become confused, disoriented, or have difficulty focusing. The two can occur together, which is why noticeable changes should be reported to the hospice team.
4. How can I calm a restless hospice patient?
A quiet environment, calm communication, familiar music, gentle touch, prayer, meditation, or simply sitting nearby may provide comfort depending on the patient’s preferences. If the restlessness is new, increasing, or appears to be causing distress, contact the hospice nurse so possible physical or medical causes can be evaluated.
5. When should I call hospice about restlessness or anxiety?
Call whenever restlessness or anxiety becomes more noticeable, the patient appears uncomfortable, confusion develops, breathing changes, pain increases, or you are uncertain about what to do. You do not need to wait for symptoms to become severe. Patients and families receiving care from ProCare Hospice of Nevada can call 702.380.8300 with questions or concerns.
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