Your Rights as a Hospice Patient

As a hospice patient you have clear, federally protected rights: to be fully informed about your care, to take part in decisions, to choose and change your hospice, to voice complaints without fear of retaliation, and to receive care free from neglect or abuse. Medicare requires hospices to give you these rights in writing at admission, and a good hospice treats them as the foundation of care, not fine print.

The right to be informed

You have the right to understand your diagnosis, your plan of care, the services the hospice will and will not provide, and how your care is paid for. The hospice must explain these in language you understand, including which costs the Medicare benefit covers (services, terminal-illness medications with a copay of no more than $5 per prescription, and equipment) and which it does not (such as room and board under Routine Home Care).

The right to take part in decisions

You, or your legal representative if you cannot decide for yourself, have the right to help shape the plan of care, to accept or refuse treatment, and to set the goals of care. You can request a care conference at any time. Hospice does not require a DNR; your code-status and treatment choices are yours to make.

The right to choose and change your hospice

You choose which Medicare-certified hospice provides your care, and you may change your designated hospice once per benefit period with no penalty. You can also leave hospice entirely and resume curative treatment at any time. Our guide on how to switch hospice providers walks through the process.

The right to quality care and dignity

• To receive care that meets professional standards and manages pain and symptoms.
• To be treated with respect and to have your privacy and property protected.
• To be free from neglect, abuse, and discrimination.
• To have your cultural, spiritual, and personal preferences respected.

The right to voice complaints

You have the right to raise concerns or file a grievance without retaliation, and to be told how to do so. Every Medicare hospice must give you contact information for filing complaints, including with the state and with Medicare's quality oversight body. Our guide on how to file a complaint about a hospice explains the channels. Retaliation for complaining is itself a violation of your rights.

Privacy and information rights

Your health information is protected. You have the right to confidentiality, to see your records, and to control who receives information about your care, within the limits of the law. The hospice must obtain your consent to share records with other providers.

The rights you may not know you have

A few protections surprise families, but they are real and worth knowing:

• No DNR is required. Electing hospice does not require you to sign a Do Not Resuscitate order. Your code status is your decision.
• You can keep your own doctor. Many hospices let your attending physician stay involved alongside the hospice team.
• You can leave and come back. Revoking hospice to pursue curative care is allowed, and you can re-elect later if you choose.
• You can refuse any treatment or medication, including ones the team recommends.
• You can ask for a different team member if a particular nurse, aide, or other staff member isn't the right fit.
• Bereavement support is part of the benefit for your family, continuing for at least a year — often up to about thirteen months — after a death.

Your right	What it means
Be informed	Clear explanation of care, services, and costs
Participate	Accept or refuse treatment; set goals
Choose/change	Switch hospice once per benefit period; revoke anytime
Complain safely	File grievances without retaliation
Dignity	Free from neglect, abuse, discrimination
Privacy	Confidential records; control who sees your information

How rights play out in different settings

Your rights follow you, but the day-to-day looks different depending on where you receive care:

• At home: you direct who enters your home and when, and you set the rhythm of visits within the plan of care.
• In a nursing home or assisted living: the hospice layers its services on the facility's care; you still have the right to participate in the plan and to voice complaints to both. Remember the facility's room and board is billed separately from the hospice benefit, though Medicaid may cover the nursing-home bed for dual-eligible patients in participating states.
• In an inpatient hospice unit: the same rights to dignity, information, and complaint apply.

If your rights are not respected

Start by raising the issue with the hospice's leadership; they are required to investigate. If it is not resolved, you can escalate to your state survey agency or Medicare's oversight contractor. Serious safety concerns, signs of neglect, abuse, or fraud, should be reported promptly. The step-by-step channels are in how to file a complaint about a hospice.

Frequently asked questions

Can a hospice make me sign a DNR?

No. Hospice does not require a Do Not Resuscitate order. Your code status and treatment choices are yours; a hospice that insists otherwise is misinformed.

Can I switch hospices if I'm unhappy?

Yes. You may change your designated hospice once per benefit period without penalty, and the new provider helps coordinate the transfer. See how to switch hospice providers.

Will complaining hurt my care?

It shouldn't — retaliation for filing a grievance is itself a violation of your rights. Every Medicare hospice must give you the contact information to complain to the agency, the state survey agency, and Medicare's oversight body.

Can I keep seeing my own doctor?

Often yes. Many hospices keep your attending physician involved alongside the hospice medical team. Ask the hospice how they coordinate with your existing doctor at admission.

Do I have to accept every service the hospice offers?

No. You can accept or decline individual services and treatments. Some families welcome the chaplain and volunteers; others prefer just nursing and aide support. The plan of care is meant to reflect your goals and preferences, and you can adjust it through a care conference at any time.

What can I expect the hospice to give me in writing at admission?

Medicare requires hospices to provide a written notice of your rights, an explanation of covered and non-covered services and costs, and the contact information for filing complaints with the agency, the state survey agency, and Medicare's oversight body. Keep these documents together where you can find them.

How to use your rights in practice

Rights only help if you exercise them, and doing so doesn't make you a "difficult" family — it makes you an engaged one. A few practical habits:

• Ask for the plan of care in writing and read it. If a service you expected isn't there, say so and ask why.
• Request a care conference whenever goals shift or you feel out of the loop; you're entitled to one.
• Keep a simple log of visits, calls, and any concerns, with dates. It helps the team and gives you a record if you ever need to escalate.
• Name your decision-maker early. Make sure the hospice has your healthcare proxy or power-of-attorney paperwork so the right person can speak for the patient if needed.
• Speak up about comfort and dignity — pain that isn't controlled, a missed visit, or a preference being overlooked are all legitimate things to raise immediately.

Good hospices welcome this engagement, because it helps them deliver the care you're entitled to. If raising a concern is ever met with defensiveness or retaliation, that itself is a violation worth escalating.

Your practical next step

Keep the written notice of rights the hospice gave you at admission, along with the complaint phone numbers. Review the plan of care so you know what to expect and can speak up if something is missing. If you are choosing a provider, you can compare hospices near you on quality and family-survey scores, which reflect how well a hospice honors patients and families in practice.