Can You Get a Loved One's Hospice Medical Records After They Die?

Yes, in most cases, if you are the person with legal authority over the estate. Under the federal HIPAA Privacy Rule, a hospice must treat an executor, administrator, or other person with authority under state law to act for a deceased person or their estate as that person's "personal representative," which includes the right to request their records. Other family members who were involved in the care can sometimes be given information relevant to their involvement. And the hospice must keep the clinical record for at least six years after the death, so there is time to ask.

Families ask for hospice records for many reasons: to understand what happened in the final weeks, to settle a life insurance or estate matter, to share family medical history with relatives, or to support a complaint. An executor or administrator generally does not have to justify the request, though the hospice will ask for proof of authority. HHS says an executor can access the health information relevant to that role, and state law sets its scope.

Who can get the records

The personal representative

The HIPAA rules (45 CFR 164.502(g)(4)) say that if, under applicable law, an executor, administrator, or other person has authority to act on behalf of a deceased individual or the estate, the covered entity must treat that person as the personal representative for protected health information relevant to that role. In practice, the hospice will ask for proof of that authority, such as court papers naming you executor or administrator. Who qualifies when there is no will or no court appointment depends on your state's law, so ask the hospice what it accepts.

Family members who were involved in the care

A separate HIPAA provision (45 CFR 164.510(b)(5)) allows a provider to disclose to a family member, or another person who was involved in the person's care or payment for care before death, information relevant to that person's involvement, unless doing so is inconsistent with a prior expressed preference of the deceased that the provider knows about. This is a permission, not a requirement, so a hospice may share a conversation's worth of information with the daughter who was the main caregiver while still asking the executor to request the full chart.

How long the hospice keeps the records

Medicare's conditions of participation for hospices (42 CFR 418.104(d)) require patient clinical records to be kept for 6 years after the death or discharge of the patient, unless state law requires longer. If a hospice closes, its policies must provide for storing the records, and it must tell its state agency and CMS regional office where the records are kept and how they can be accessed. If your loved one's hospice has closed, the state agency that licenses hospices is a good place to start.

Separately, HIPAA protects a deceased person's health information for 50 years after death, so privacy rules continue to apply to the record long after the hospice could otherwise discard it.

How to request the records

1. Call the hospice and ask for its medical records or privacy office. Ask how it wants the request made; HIPAA allows a provider to require written requests if it tells you so.
2. Send a written request with your loved one's full name, date of birth, dates of hospice care, what you want (the whole chart, or specific parts like visit notes and the medication record), and whether you want paper or electronic copies.
3. Include proof of your authority, such as the death certificate and the court document naming you executor or administrator.
4. Keep a copy of what you sent and note the date.

How long it takes and what it costs

Under 45 CFR 164.524, a provider must act on a request for access no later than 30 days after receiving it. It may extend once by up to 30 more days if it tells you in writing, within the first 30 days, why and when it will finish. It may charge a reasonable, cost-based fee that covers only labor for copying, supplies for creating the paper copy or the portable electronic media you ask for, postage if mailed, and preparing an explanation or summary if you agree to one.

What is in a hospice record

A hospice clinical record typically includes the plan of care, assessments, physician certifications of terminal illness, visit notes from nurses, aides, social workers and chaplains, medication orders, and documentation around the death. To understand some of these documents, see what is a hospice plan of care. The death certificate itself is a separate state vital record, ordered through the funeral home or the state; see who signs the death certificate on hospice.

If the hospice refuses or does not answer

• Ask for any denial in writing. HIPAA requires a written denial when access is refused in whole or in part.
• Contact the hospice's privacy official; every HIPAA-covered provider must designate one.
• If you believe your rights were violated, you can file a HIPAA complaint with the HHS Office for Civil Rights. File within 180 days of when you learned of the problem; OCR can extend that only for good cause.
• If your concern is about the care itself rather than access to records, see how to file a complaint about a hospice.

Frequently asked questions

I was my mother's health care power of attorney. Can I get her records?

For records after death, HIPAA looks to the person with authority to act for the deceased or the estate under state law, such as an executor or administrator. If that is not you, the hospice may still share information relevant to your involvement in her care. Ask the hospice what documentation it needs from you. Our guide on hospice and power of attorney covers the role while your loved one is living.

Can the hospice refuse because my father told them to keep things private?

For family members who are not the personal representative, yes: the involvement-in-care permission does not apply if sharing would be inconsistent with a prior expressed preference the hospice knows about. The personal representative's request is handled under the access rules instead.

How long do I have to ask?

Hospices must keep clinical records at least 6 years after the death, longer if state law requires. Requesting sooner is easier.

Will getting the records cost a lot?

HIPAA limits fees to a reasonable, cost-based amount covering copying labor, supplies, postage, and any summary you agree to. Ask for the fee up front.

What to do next

Decide who will make the request (usually the executor), call the hospice's records or privacy office to learn its process, and send a written request with the death certificate and proof of authority. Note the date, and follow up if 30 days pass without an answer.