The Hospice Isn’t Working
You signed up for hospice and the help isn’t showing up, nobody is calling back, or the care isn’t enough.
First, find out whether the problem is a missed service, a symptom crisis, or a mismatch between what hospice provides and what you need.
If a symptom is out of control right now, that’s the call to make first. Use I Need Help With a Symptom Change Now →
Ask What’s Supposed to Be Happening
Ask for the plan of care.
Say:
“Can I get a copy of the plan of care and the names of the people on the team?”
Then ask:
“How often is each person supposed to visit?”
“Who do I call after hours?”
“Who’s the nurse or case manager responsible for this?”
If visits are being missed or the plan isn’t being followed, write down what didn’t happen and when.
If Nobody Answers
Call the hospice 24-hour number again.
Say:
“I called at [time] and haven’t heard back. The problem is [pain, breathing, agitation, medication, other]. When should I expect a nurse to call?”
If that time passes, call again and ask for the nurse on call, clinical supervisor, or administrator on call.
If the person is in immediate danger, call 911.
If Hospice Isn’t Enough Care
Hospice usually provides visits and other services according to the plan of care. It doesn’t usually provide someone who stays in the home all day.
Medicare hospice has four levels of care. Most care is routine home care. During a symptom crisis, continuous home care or short-term inpatient hospice may sometimes be available. Inpatient respite can provide a short break for a caregiver.
Ask which level the person is receiving now and whether another level should be considered.
Ask:
“Can the visit schedule be changed?”
“Does this situation qualify for continuous home care?”
“Do they need short-term inpatient hospice for symptom control?”
“Is respite available?”
Ask what each option would provide, when it could start, and who’s arranging it.
For help beyond hospice visits, use I Need Help Caring for Someone →
If the caregiver can’t keep going at the current level, use I Need a Break from Caregiving →
If the Problem Is One Person
Sometimes the problem is one nurse, aide, or team member rather than the whole agency.
You can ask for someone else without changing agencies.
Say:
“This isn’t working for us. Can you assign a different [nurse, aide, social worker]?”
You don’t have to explain more than that.
Escalate Inside the Hospice
If the problem isn’t being fixed, ask for the clinical manager, director of nursing, or administrator.
Say:
“What we have isn’t working. I need to know what’s going to change and when.”
Ask for a care conference if needed.
Then ask:
“Can you update the plan of care and send me a copy?”
If the person has Medicare, look at the hospice election statement addendum. It should list anything the hospice says it won’t cover because it considers it unrelated to the terminal illness or related conditions. If you disagree, ask how to challenge that decision.
If It Still Isn’t Fixed
You can make a complaint and stay on hospice.
Ask the hospice how to file a formal complaint with the hospice itself.
You can also file a complaint with your state’s survey agency, which investigates hospice care. Find its contact information in the State Survey Agency Contacts directory ↗.
If the person has Medicare and you’re concerned about the quality of care, call 1-800-MEDICARE (1-800-633-4227) for help finding the State Survey Agency or Medicare quality-review organization that handles the concern.
The State Survey Agency handles complaints about whether the hospice is meeting licensing or certification requirements. A Medicare quality-review organization handles concerns about the quality or appropriateness of Medicare-covered care, when that route applies.
Ask:
“Who’s responsible for the person’s care while this complaint is being reviewed, and what visits or services should still happen?”
Keep a short record of dates, calls, missed visits, and what you were told.
If Medicare says hospice coverage is ending, or a Medicare plan denies care, see Medicare Denied or Is Ending Coverage →
If You Want a Different Hospice
You can ask about transferring to another hospice.
If the person has Medicare, the hospice provider can be changed once in each benefit period.
Call the new hospice first and ask:
“Can you accept this patient and their insurance, and when could you start?”
Confirm who will handle medications, equipment, and the transfer before anything changes.
Once the new hospice agrees, the person or their decision-maker signs a short statement naming the new hospice and the date of the change. Ask both agencies to confirm they have it, so care doesn’t stop between them.
Changing hospice agencies is different from revoking hospice.
For what to ask when choosing another agency, use I Need Help Understanding or Starting Hospice for Someone Else →
Before You Revoke Hospice
If you’re thinking about leaving hospice to pursue treatment or for another reason, ask what happens to medications, equipment, coverage, and care the day hospice ends.
If the problem is the agency rather than hospice itself, ask about transferring before you revoke.
Before You Stop
Know:
- what the plan of care actually says
- which level of care the person is receiving
- who the responsible nurse or case manager is
- what was promised, and by when
- what the after-hours number actually produces
- what you’ll do if the next promise isn’t kept
Find out whether hospice is failing to provide the plan, or whether the plan itself is no longer enough.
Helpful Resources
Official Medicare information about hospice coverage, levels of care, changing hospice providers, costs, and patient rights.
Information about complaints, quality-of-care concerns, State Survey Agencies, and other Medicare protections.
Find the state agency that investigates complaints about hospice care.
Learn More
Information about hospice patient rights, examples of neglect, and how concerns about hospice care can be reported.
