When someone you love is in a hospital, on hospice, or in a nursing home, you notice things: the pain medicine that's late, the call light no one answers, the wish that gets brushed aside. And then the hard question: Am I allowed to say something? You are. This guide shows you how.
Free Family Guide: Your Right to Be Heard
When Care Falls Short in a Hospital, Hospice, or Nursing Home · 94 printable pages · for families in any U.S. state
Download the Free Guide →If this guide helped you, you're welcome to leave a small thank-you gift.
You Are Allowed to Speak Up
Many families stay quiet because they're afraid of being labeled "the difficult family," or worry their loved one will be treated worse. Those fears are real. But the rules are on your side.
Under federal rules that every Medicare-certified facility must follow:
- Hospitals must tell patients their rights, have a grievance process, and give a written response to formal grievances. Patients can also go straight to the state agency without using the hospital's process first (42 CFR 482.13).
- Hospices must let patients and families raise complaints without discrimination or reprisal, and must investigate and work to resolve them. Effective pain and symptom control is a stated patient right (42 CFR 418.52).
- Nursing homes must accept grievances spoken, written, or anonymous, without fear of reprisal, and give a written decision (42 CFR 483.10).
Patient safety experts agree that families often notice problems first. You know your loved one's normal. Saying so out loud is part of good care.
Start a Record Before You Need One
Notes written on the day something happens carry far more weight than memories pieced together later. Stick to what you saw and heard, with the date and time. "Call light on 7:10 to 7:55, no one came" is stronger than "They ignored her." The guide includes a daily care log, a conversation log, and a medicine and comfort log you can start today.
Climb the Ladder One Step at a Time
Most problems can be fixed inside the building if the right person hears about them. Start with the bedside nurse, then the charge nurse, then the doctor or a care conference, then the manager or director, then the patient advocate or administrator, and finally a formal written grievance. If someone is in danger, skip straight to the top or call 911.
Two small things make a big difference:
- Say what you want, not just what's wrong. "Please call the doctor about her pain tonight" gets further than "This is terrible."
- Use the word "grievance" if you want a written answer. Hospitals often treat a concern fixed on the spot as a "complaint." A grievance comes with a written response.
Many hospitals train staff in a teamwork program called TeamSTEPPS, from the Agency for Healthcare Research and Quality. Its three-step phrases work for families too: "I'm concerned... I'm uncomfortable... This is a safety issue." Staff trained in it know the last phrase means stop and listen.
When It Can't Wait
In the hospital, ask on the first day whether families can call a rapid response team themselves. These programs go by names like Condition H or Condition Help. In a study of one large hospital system's family-activated program, published in the Journal of Hospital Medicine in 2017, a large share of family calls led to a change in the patient's care. Families often catch something important.
On hospice, nursing, doctor services, and medicines must be available 24 hours a day, 7 days a week. If no one answers or no nurse can come when symptoms are out of control, call back and ask for the on-call supervisor, write down every call time, and report it in writing the next day. If hospice tells you to "just call 911" for a symptom of the terminal illness, it's fair to ask why, and to ask about continuous care or an inpatient bed.
When a Discharge Comes Too Soon
People with Medicare have the right to a fast, free, independent review when they believe a discharge is too soon:
- Hospital: look for the notice called An Important Message from Medicare About Your Rights. Call the number on it no later than the planned discharge date, before leaving.
- Hospice, skilled nursing, or home health ending: look for the Notice of Medicare Non-Coverage. Call by noon of the day before services end.
- Nursing home discharge started by the facility: there must be a written notice, usually 30 days ahead, with appeal rights. Deadlines vary by state, so call the long-term care ombudsman right away.
The reviewer for Medicare is called the BFCC-QIO. Your notice lists its number, or you can find your BFCC-QIO here. Few families know it also offers Immediate Advocacy, a quick, informal process where staff call the provider for you while care is still happening.
Who to Call When the Facility Doesn't Fix It
You can go outside the building at any time, and you can file with more than one agency at once.
- Poor or unsafe care: your state survey agency (usually part of the state health department), which can inspect without warning and cite the facility.
- Quality of care under Medicare: the BFCC-QIO, where a doctor reviews whether care met professional standards.
- Nursing homes and assisted living: the free, confidential long-term care ombudsman. Find yours through the Eldercare Locator (1-800-677-1116) or The Consumer Voice.
- Discrimination, no interpreter, or refused records: the HHS Office for Civil Rights, usually within 180 days.
- Abuse or neglect: 911 if urgent, then Adult Protective Services, the state survey agency, and police for crimes.
- Medicare questions: 1-800-MEDICARE, or free one-on-one counseling through your State Health Insurance Assistance Program (SHIP).
The guide has a full "who to call for what" chart and every key deadline on one page.
Speaking Up After a Death
Some families only learn what went wrong after their loved one has died. Wanting answers isn't "dwelling" or "blaming." It's often part of grieving, and it can protect the next family. You can still request records, ask for a meeting, file a grievance, or contact the agencies above. Go gently, one step at a time, and watch the shorter deadlines. It's also okay to choose peace instead.
Take Care of Yourself, Too
Advocating while someone you love is dying is exhausting. Share the load, take breaks, and lean on the hospice social worker and chaplain, who are there for families as well as patients. If you're struggling to sleep, eat, or function, talk with your doctor or a counselor. If you're in crisis, call or text 988 any time.
Keep-Handy Sheets for Families
Six free, short printables to fill in and keep where you’ll need them: on the refrigerator, in a wallet, and in the hospital bag.
- Call Hospice First: the 24-hour number, when to call, what to say, and what to do if paramedics are already there.
- Going to the Hospital?: a bag checklist, plus what to say and ask once you arrive.
- I’m on Hospice wallet cards: cut-and-fold cards for the patient, and a card for the caregiver.
- Your Rights in Hospice: your rights in plain words, and who to call if something isn’t right.
- Before the ER, or Before Leaving Hospice: questions to ask first, so no one gives up hospice by accident.
- Our Care Team: every name and number in one place, with a weekly visit schedule.
For Hospice Teams
Families rarely find their way to these rights on their own. That's why there's a companion guide for staff: Advocating for Your Patients and Families, a 92-page guide for hospice nurses, aides, social workers, chaplains, and volunteers, with hard situations, escalation steps, and team training. It's free in the Hospice Staff Library.
Hospice staff can also find a free Advocacy Toolkit in the Hospice Staff Library: a hospital transfer sheet, a “Do I Have to Report This?” flowchart, an escalation poster, complaint intake forms, an SBAR call pad, a revocation conversation guide, and orientation and training pieces.
More Free Guides for Hospice Families
- What to Expect in the Final Days
- The First Hours After a Death at Home
- Caring for Someone in Hospice
- Is This Still Grief? When Grief Needs More Help
This guide shares general information only. It is not legal or medical advice. Rules, agencies, and phone numbers vary by state and plan and can change, so always check with the agency involved.
Speaking up for someone you love isn't being difficult. It's love doing its job. Download Your Right to Be Heard (free PDF) →