I Need Help With a Symptom Change Now

Call the Right Person

On hospice, and the change may be part of the illness or dying. Call the hospice 24-hour number.

Another team is managing the symptom. Call that team. If it’s palliative care or home health, ask whether they have after-hours coverage. Many don’t.

No team is managing it. Call the clinician who knows the person best, or the office that most recently treated the problem. If the office is closed, use the after-hours number.

If the person is in immediate danger, call 911.

“Something has changed. This is what I’m seeing, this is what we’ve already done, and this is what happened.”

Describe What You See

You don’t need medical language. Tell them:

• what changed and when, and whether it started suddenly or gradually
• whether the person wakes and responds
• whether they can swallow
• what their breathing looks or sounds like
• where pain seems to be
• whether they seem calm, frightened, restless, confused, or unusually sleepy
• what medication was given and whether it helped

“He started breathing much faster about 20 minutes ago. I gave the medication the nurse told us to use, but he still looks uncomfortable.”

Say whether the person looks comfortable or distressed. That helps the nurse decide what needs to happen next.

Breathing can become faster, slower, irregular, noisy, or interrupted by pauses near the end of life. A breathing change can look frightening without meaning the person is suffering.

Get a Plan Before You Hang Up

Ask:

• What should we do now?
• Should we give any medication?
• When should it start helping?
• Is someone calling back or coming to see the person?
• What should we do if this gets worse?

Then ask:

“When should I call again if this isn’t better?”

If Medication Is Part of This

If you have written instructions for as-needed, breakthrough, or comfort medication, follow those instructions.

Tell the team what you gave, how much, when, and whether it helped.

Don’t change the medication plan on your own. If you aren’t sure what to give, when, or whether to give another dose, call and ask.

If you’re given medication instructions by phone, write down the medication, dose, time, and when you may give another dose. Read it back to the nurse or clinician before you hang up.

If there’s a comfort medication kit in the home, call the hospice nurse and ask whether anything in it should be used now.

If Swallowing Has Changed

If the person coughs, chokes, holds food or liquid in their mouth, or can’t seem to swallow safely, tell the care team.

Don’t give food, liquid, or medication by mouth if the person can’t swallow safely unless the care team tells you to.

That doesn’t mean stopping the medication plan. It means calling and asking how the plan should change.

“They can’t swallow the medication the way we were told to give it. What should we do now?”

Many comfort medications can be given another way. Ask what applies to this medication.

Also call if the person is too sleepy to take medication, vomits it back up, refuses it, or can’t use the device the plan depends on.

If No One Answers

Use the after-hours or on-call number you were given.

If there’s an answering service, ask for the nurse or clinician who’s covering, and ask when they’ll call back. Write down the time you called.

If that time passes, call again.

If hospice is involved, ask for the nurse on call or clinical supervisor. If another service is involved, ask whether there’s a covering clinician or supervisor who can respond now.

If no clinical help can be reached and the symptom needs attention now, ask the answering service who can tell you where the person should be evaluated.

If the person becomes unsafe or is in immediate danger while you’re waiting, call 911.

If the Plan Doesn’t Work

If the symptom still isn’t controlled when the team said to expect improvement, call back.

“We followed the plan, but this still isn’t controlled. What should we do next?”

Unmanaged pain isn’t something you should be expected to accept.

If pain is the main problem, use The Pain Isn’t Being Controlled →

If repeated phone instructions aren’t controlling the symptom, ask whether someone needs to come assess the person.

Don’t assume silence means you should keep waiting.

If the Person Lives in a Facility

Tell the nurse or staff member responsible for the person about the change.

If the person is also on hospice, call hospice too.

“Who’s doing what next, the facility or hospice?”

Don’t assume one team has already called the other.