The Pain Isn’t Being Controlled

If the Pain Is Severe Right Now

If the person is on hospice and the pain or other change may be part of the illness or dying, call the hospice 24-hour number first.

If not, call the clinician managing the pain. Use the after-hours number if the office is closed.

Ask:

“Can this still be managed here, or do they need urgent evaluation somewhere else?”

If the person is in immediate danger, call 911.

Examples include a serious injury, choking, or severe breathing trouble that’s sudden or not expected in the person’s current condition.

If the person is becoming sleepier or harder to wake and you aren’t sure whether that’s expected, call the care team and describe exactly what you’re seeing.

Get a New Plan

Say:

“The current plan isn’t controlling the pain. What can we change?”

Ask whether the dose, timing, medicine, or way it’s given needs to change.

Ask:

“What should we use if the pain breaks through between doses?”

“Could something else be causing the pain?”

Before you get off the phone, ask:

“If this doesn’t work, what do I do next and when should I call again?”

Write down the answer.

If You’re Afraid to Give the Medication

Tell the nurse or doctor.

Say:

“I’m afraid of giving this medicine. Please go through the dose and timing with me and tell me what to watch for.”

If you’re worried the medicine will speed up dying or cause addiction, say that too. The nurse can talk it through with you.

If the person is on hospice, ask the nurse to talk you through a dose if you need help.

Don’t give more than the prescribed amount unless the clinical team tells you to change the plan.

If the Pain Still Isn’t Controlled

Call back and say:

“The pain still isn’t controlled. What’s the next step?”

Ask whether another clinician should be involved, such as palliative care or a pain specialist.

For serious illness, use I Need Help Understanding Palliative Care →

If hospice may be appropriate, use I Need Help Understanding or Starting Hospice for Someone Else →

If the person is on hospice and calls aren’t being returned, visits are being missed, or the hospice won’t change the plan, use The Hospice Isn’t Working →

If the Pharmacy Can’t Fill the Prescription

Call the prescriber.

Say:

“The pharmacy can’t fill this today. What should we do so the person doesn’t go without pain medicine?”

Ask whether it can be sent to another pharmacy or whether another medication is appropriate.

If cost is the problem, use I Need Help Paying for My Medications →

If the person is on hospice and the medication is for the terminal illness or related symptoms, call hospice before you pay for it and ask what hospice is arranging.

If the Person Can’t Tell You They’re Hurting

Pain may show up as grimacing, guarding, moaning, restlessness, pulling away during care, or a sudden change in behavior.

Tell the nurse what you see.

Ask:

“Could this be pain, and what should we do about it?”

Don’t assume every new behavior is pain. Ask the clinical team what else could be causing the change.

Keep a Simple Record

Write down:

• what medicine was given and when
• what the pain looked like before and after
• how long the relief lasted

Use that information on the next call.

Before You Rely on the New Plan

Know:

• who to call now
• what was given and when
• what the new plan is
• when to call back if it doesn’t work
• what to do if the pain becomes severe or the situation changes