What If I'm Unhappy With My Hospice?

If you are unhappy with your hospice, you have real options: tell the team exactly what is wrong and ask for a fix, complain to someone outside the agency, switch to a different hospice, or leave hospice altogether. You can do more than one at the same time. Federal rules give hospice patients the right to voice grievances without reprisal (42 CFR 418.52), and Medicare lets you change your designated hospice once in each benefit period (42 CFR 418.30). You are never trapped.

If symptoms are out of control right now

Treat it as urgent. Call the hospice's on-call line, say what is happening, and ask for a nurse visit and a medication review. Ask directly whether this calls for continuous home care or general inpatient care. Hospices must keep nursing services, physician services and drugs available 24 hours a day, 7 days a week (42 CFR 418.100), and patients have the right to effective pain and symptom control (42 CFR 418.52). If the response is too slow or no one comes, ask for the supervisor on call and write down the time of every call. Persistent failure to respond is a reportable quality concern, and it is something state surveyors check. If you cannot get help and it is an emergency, call 911; see when to call the hospice team vs. go to the hospital.

Start by naming the problem to the team

Many issues, missed visits, slow callbacks, uncontrolled symptoms, poor communication, can be fixed once the right person hears them. Start with the nurse case manager, since every patient must have a designated registered nurse coordinating care (42 CFR 418.56). Next comes the director of nursing or clinical manager, then the administrator, who is responsible for the hospice's day-to-day operation (42 CFR 418.100). For a disagreement about medical care, ask for the hospice medical director. Be specific: what was supposed to happen, what actually happened, what you need, and by when.

Ask for a copy of the plan of care and use it as your yardstick. It must spell out the scope and frequency of services, and the team must review and revise it as often as the patient's condition requires, at least every 15 calendar days (42 CFR 418.56). The patient or representative has the right to be involved in developing it.

Knowing your rights as a hospice patient gives these conversations weight. You are entitled to effective symptom management, clear information about services, and respectful care.

Common complaints and the first step for each

It helps to match the problem to the right first move, because not every issue needs a formal escalation:

Problem	First step
Symptoms (pain, breathlessness) not controlled	Call the on-call line now; request a plan-of-care review and a nurse visit
Missed or late visits	Compare what happened with the visit frequency in the plan of care; ask the nurse case manager for a written visit schedule and accountability
Slow after-hours callbacks	Ask the director of nursing about on-call staffing and expected response times; log how long each callback took
Aide is inconsistent or a poor fit	Request a specific aide or a replacement; this is a reasonable ask
Poor communication / feeling unheard	Request a care conference with the interdisciplinary team
Medication, supplies or equipment late or missing	Call the hospice; it must provide those related to the terminal illness (42 CFR 418.106)
Told a drug or service is not covered	Ask for the hospice's written “Patient Notification of Hospice Non-Covered Items, Services, and Drugs.” For elections on or after October 1, 2026, the hospice must give it to you within the first 5 days and update it within 3 days of a plan change that affects it (42 CFR 418.24). If you disagree, ask your BFCC-QIO for immediate advocacy (see below)
Trust is broken or care is unsafe	File a complaint and begin researching a switch in parallel
Suspected abuse, neglect or stolen property	Tell the hospice administrator; the hospice must investigate immediately (42 CFR 418.52). Report it to the state survey agency, and call Adult Protective Services, or 911 if someone is in danger

Request a care conference

A care conference is a sit-down (in person or by phone) with the nurse, social worker, and often the hospice physician to review what is and isn't working. You can ask for one at any time. Come with a written list of specific incidents (dates, names, what happened) and a clear statement of what you need to change. It puts the whole team and the plan of care on the table at once. If symptoms are the issue, this is also where medication and visit frequency get adjusted.

What to document before you escalate

Whether you stay and push for change or move to a new provider, keep a simple log with the date and time of each problem, who you spoke with, what was promised, and what actually happened. Note missed or late visits, how long after-hours callbacks took, and any periods of uncontrolled symptoms. The log turns a vague “the care isn't good” into specific, answerable items, and it becomes the backbone of any formal complaint to the state, Medicare, or an accreditor. Keep copies of the plan of care and any written visit schedules alongside it. Ask the hospice to record your complaint, too: state surveyors review hospice complaint logs to see how complaints were received, investigated, and resolved.

Who can you complain to outside the hospice?

You do not have to go through the hospice first, and a caregiver can file as well as the patient. Our guide on how to file a complaint about a hospice has the steps for each of these:

• Your state survey agency inspects hospices and takes complaints about quality of care and safety. 1-800-MEDICARE (1-800-633-4227) can help you reach it.
• Your Beneficiary and Family Centered Care Quality Improvement Organization (BFCC-QIO) reviews Medicare quality-of-care complaints. Medicare points you here if you are uncomfortable complaining to the hospice or unhappy with its response. Its contact information must be on the election statement you signed (42 CFR 418.24). Ask about immediate advocacy, an informal process in which the QIO contacts the hospice for you to try to resolve a complaint quickly. Everyone has to agree to it and it is not anonymous, but it does not stop you from filing a formal complaint afterward.
• The accrediting organization, if the hospice is accredited. Ask the hospice which one.
• The Long-Term Care Ombudsman, if the patient lives in a nursing home or assisted living. Ombudsmen work to resolve complaints made by or for residents.
• The HHS Office of Inspector General (1-800-HHS-TIPS) for suspected fraud, such as billing for visits that never happened. See hospice fraud warning signs.
• Adult Protective Services or 911 for abuse, neglect, or immediate danger.

Decision guide: escalate, complain, or switch?

• Is this a one-off that the team can fix? Start with the case manager or a care conference; give them a specific deadline.
• Is it a recurring pattern despite asking? Escalate to the director of nursing in writing, and file a complaint with the state agency or your BFCC-QIO so there's a record.
• Is care unsafe, or is trust gone? File the complaint AND begin researching alternatives immediately, so a switch can happen without a coverage gap.
• Is the issue a single rude staff member, not the whole agency? Request a different team member before assuming you must leave the provider entirely.

If you decide to switch hospices

Medicare lets you change your designated hospice once in each benefit period without penalty; a second change in the same period is not permitted. Benefit periods are two initial 90-day periods followed by unlimited 60-day periods, so a longer stay brings more chances. A change is a transfer, not a revocation: you stay on hospice in the same benefit period, the old and new hospice use the same effective date, and the new hospice notifies Medicare. There should be no gap in coverage if the dates match, so line up the new hospice and get its start date before you sign anything. Time the switch thoughtfully, but never delay so long that your loved one suffers. Read whether you can switch or fire your hospice for the rules, including what to do if you have already used your change this period, and how to switch hospice providers for the step-by-step.

If you want to leave hospice altogether

You can revoke hospice at any time with a signed statement; a verbal revocation does not count. Hospice coverage ends on the date you name, including the hospice's nurses, on-call line, comfort medications, and equipment, so arrange other care first. Standard Medicare coverage resumes (if you stayed in a Medicare Advantage plan, Original Medicare pays through the end of that month and then your plan takes over), the days left in that benefit period are forfeited, and there is no waiting period to elect hospice again if the patient still qualifies. That choice belongs to you. The Medicare Benefit Policy Manual says a hospice should not request or demand that a patient revoke, so you do not have to sign a revocation because you complained or were asked to. See leaving hospice to resume treatment.

The misconception, corrected

Families often believe that once they sign on, they are stuck, or that complaining will get their loved one discharged or labeled "difficult." Neither is how the rules work. Choosing hospice does not waive your rights, and federal rules bar reprisal for using them. Switching is a built-in protection, not a loophole.

Frequently asked questions

Can the hospice discharge us for complaining?

Complaining is not a lawful reason for discharge. Federal rules allow a hospice to discharge a patient only if the patient moves out of the service area or transfers, is no longer terminally ill, or “for cause”: when the behavior of the patient or others in the home is so disruptive, abusive, or uncooperative that delivery of care, or the hospice's ability to operate effectively, is seriously impaired. Before a for-cause discharge the hospice must warn you, make a serious effort to resolve the problem, and document it (42 CFR 418.26), and it must notify the state survey agency. Raising concerns is not that. If a discharge is threatened after you complain, call the state survey agency and keep written records.

What if the hospice says we no longer qualify?

Ask for the written Notice of Medicare Non-Coverage, which should reach you at least 2 days before coverage ends. If you disagree, you have the right to a fast review by your BFCC-QIO, which must decide within 72 hours of your request (42 CFR 405.1202). The deadline to ask is short, so call the number on the notice the same day you get it. See live discharge explained.

Can a family member complain if the patient cannot?

Yes. Medicare says you or your caregiver can file a quality-of-care complaint with the state survey agency. Switching hospices or revoking is different: the patient must sign, or a representative with authority under state law. A BFCC-QIO may also need proof that you represent the patient before it shares information with you or lets you take part in immediate advocacy, usually Form CMS-1696, a power of attorney, or a similar document.

What if the problem is the nursing home, not the hospice?

Raise it with both. In a nursing home, the facility stays responsible for room and board and personal care, and the hospice is responsible for hospice care. The state survey agency and the Long-Term Care Ombudsman can take complaints about either.

Your practical next step

Write down the specific problems with dates and names, then request a meeting with the agency's nursing leadership and state clearly what you need fixed and by when. If the response is inadequate, begin researching alternatives right away so a switch can happen smoothly. Use family-survey scores and quality measures to vet candidates, and compare hospices near you before you move. Acting early, while you still have options, protects your loved one's comfort.