What to Do for Pain, Breathing Changes, Restlessness, and When to Call Immediately
There are moments in hospice that feel steady.
And then there are moments that don’t.
A change in breathing.
Pain that seems stronger.
A kind of restlessness that feels unfamiliar and hard to settle.
These are the moments that make people pause and think:
“Is this normal… or is something wrong?”
Let me steady this first:
A change in symptoms does not mean you’ve failed.
It means the body is changing and the care plan may need to change with it.
You are not expected to manage that alone.
This guide will walk you through what to do, step by step.
First: How to Think in the Moment
When something changes, your job is not to figure out what is going on.
Your job is to:
- Notice what’s happening
- Use what you’ve been given- medications, repositioning, comfort measures
- Call hospice if it’s not enough
That’s it.
You don’t have to get it perfect. You just have to respond.
A Simple Decision Path
When you’re unsure, gently ask yourself:
- What am I seeing right now?
- Have I given the medication that was ordered?
- Is it helping?
If the answer is no or not enough
That is your signal to call hospice
Pain That Isn’t Controlled
Pain can change quickly near the end of life.
Sometimes people can’t tell you directly, so you may notice:
- Facial tension or grimacing
- Moaning or calling out
- Restlessness or inability to settle
- Guarding or stiffness
What You Can Do Right Away
- Give the prescribed pain medication as directed
- Reposition for comfort
- Keep the environment calm and quiet
When to Call Hospice
- Pain is not improving after medication
- Pain is increasing quickly
- You’re unsure if another dose is safe
What to Say
“The pain seems about an 8 out of 10, and it’s not improving after medication.”
You don’t need perfect numbers—just a clear picture.
Shortness of Breath (Air Hunger)
This can be one of the most distressing symptoms to witness.
It may look like:
- Rapid breathing
- Long pauses or irregular breathing
- Gasping or labored effort
- A look of anxiety or panic
What You Can Do Right Away
- Elevate the head of the bed
- Use oxygen if it’s ordered
- Direct cool air (like a fan) toward the face, or a ceiling on high
- Give medications for breathing or anxiety
When to Call Hospice
- Breathing feels labored or frightening
- Medication isn’t helping enough
- You feel unsure what to do next
What to Say
“The breathing has changed and looks like they’re working hard to breathe.”
That is enough.
Restlessness and Agitation
This can feel confusing and even alarming.
It may look like:
- Picking at clothing or the air
- Trying to get out of bed
- Confusion or not recognizing people
- Repetitive movements
This is often called terminal restlessness.
It is a physical response to the body’s natural process of shutting down.
What You Can Do Right Away
- Keep the room quiet and dim
- Speak calmly and simply
- Reduce stimulation
- Give prescribed medications
When to Call Hospice
- Restlessness continues or worsens
- They cannot be calmed
- You feel overwhelmed or unsure
What to Say
“They are very restless and can’t settle, even after medication.”
The Comfort Kit (What It’s There For)
Most hospice patients have a comfort kit.
It usually includes medications for:
- Pain
- Anxiety
- Breathing distress
- Secretions
These medications are there so you don’t have to wait during a crisis.
If you feel unsure about:
- what each medication is for
- when to give it
- how much to give
Call Hospice.
The Nurse will go over the patients orders and how much needs to be given.
You are allowed to call and ask if you are unsure.
How to Communicate Clearly When You Call
When you call hospice, keep it simple:
- What you’re seeing
- When it started
- What you’ve given
- What is or isn’t helping
Example:
“Breathing changed about an hour ago. I gave medication 30 minutes ago, but it’s not helping.”
That gives the nurse what they need quickly.
When to Call Immediately
Call hospice right away if you see:
- Uncontrolled pain
- Severe breathing distress
- Sudden agitation
- A rapid or unexpected decline
- Anything that feels urgent or frightening
Trust your instinct
A Gentle Truth
When symptoms increase, it can feel like something is going wrong.
But in hospice, it often means:
The body is changing. And the plan needs to be adjusted.
That’s not failure.
That’s part of this stage.
What You Can Do Now
- Ask your nurse to review the comfort kit again
- Practice giving medications with guidance
- Keep the hospice number visible
- Write down symptoms you feel unsure about
You can say:
“Can you watch me do this so I know I’m doing it right?”
That’s called teach-back.
And it matters.
You Are Not Alone in This
There will be moments where it feels like too much.
Where you second-guess yourself.
Where you wonder if you’re doing it right.
You are.
Because you are paying attention.
Because you are showing up.
Because you are asking for help when things change.
That is what good care looks like.
A Light Beside You,
If you want to feel more prepared for what happens when things change quickly, this will help:
→ How to Get Help Fast in Hospice
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