I’m being left out of my loved one’s hospital discharge planning. How can I advocate for a safe release?

If your loved one will soon be released from inpatient psychiatric care and you haven’t been included in discharge planning, you are not alone. Caregivers of people with serious mental illness often face this challenge, and hospitals frequently cite HIPAA as the reason they can’t involve family. However, HIPAA allows more communication with family than many people realize. With clear, persistent, written advocacy, you can help the treatment team build a discharge plan that is safe and realistic for your loved one.

Understand What HIPAA Allows

Hospitals often tell families they can’t share information because the patient has declined to allow it. But HIPAA gives providers more flexibility than many hospitals use. Under HIPAA, providers may:

Use their professional judgment to decide whether sharing information with family is in the patient’s best interest
Share information directly related to a family member’s involvement in the patient’s care or payment for care
Share information with family when a patient is unable to make decisions because of incapacity, such as being disoriented or confused during a mental health crisis, if providers determine it is in the patient’s best interest
Receive information from family at any time

It’s also worth asking whether your loved one was able to make an informed decision when they declined to let information be shared. In many other legal settings, such as guardianship, treatment over objection and assisted outpatient treatment, the law recognizes that a person in a psychiatric crisis may not be able to make sound decisions for themselves. A decision made during a psychiatric emergency may not reflect your loved one’s ability to make that choice. You can ask the treatment team whether they have considered your loved one’s capacity to make this decision.

If the hospital won’t include you in discharge planning, start by writing a letter to the hospital explaining that HIPAA should not be used to shut you out. In your letter:

State that you are asking, at a minimum, to receive the proposed discharge plan, even if you can’t attend discharge meetings
Include bullet points from HHS guidance explaining that HIPAA allows providers to communicate with family based on their professional judgment about what is best for the patient
If your loved one’s symptoms are affecting their ability to make decisions, describe this and ask that information be shared with you on that basis
Enclose printed copies of, or links to, the HHS guidance listed in the Additional Resources section below

Sample letter language: "I am writing to request a copy of [NAME]’s proposed discharge plan. Guidance from the U.S. Department of Health and Human Services (HHS) makes clear that HIPAA allows providers to use their professional judgment to share information with family members when doing so is in the patient’s best interest, including when a patient is unable to make decisions because of a mental health crisis. I have enclosed this guidance for your reference.

[NAME] is currently [describe symptoms, for example: “believes that their body is controlled by a higher power and that they do not need to eat or drink” or “believes they are about to inherit millions from a celebrity, and they are giving away their money and belongings with no plan for food or rent”]. Because of this, I do not believe [NAME] is able to make an informed decision about whether to share information with me.

I have information that may affect whether the discharge plan can be carried out safely. Please share the plan with me so that I can provide this information before [NAME] is discharged."

Send your letter to the treating physician, the unit social worker or discharge planner, and, if needed, the hospital’s patient advocate, legal department or risk management office. Keep copies of everything you send.

Review the Plan and Respond in Writing

Once you receive the plan, review it carefully and respond in writing. Point out anything that would prevent the plan from working, including information your loved one may not have shared, may have chosen not to share or may not realize. For example:

Your loved one is not able to return to a particular home
There is an order of protection in place
The housing, transportation or financial support named in the plan is not available
A medication or provider named in the plan has not worked in the past

You Are Not Required to Be the Discharge Plan

If your loved one is over 18, you are not obligated to be their discharge plan. A hospital cannot require you to take your loved one into your home or to provide financial or other support. This can be one of the hardest boundaries for families to hold, but it’s important to be honest with the hospital about what support is and isn’t available. A plan that relies on support that doesn’t exist is not a safe plan.

Put Your Concerns on Notice

If the proposed plan is not safe, say so clearly in writing. Using the phrase “I am putting you on notice” makes clear that the hospital has been informed of the risks.

Sample letter language: “I am putting you on notice that the proposed discharge plan for [NAME] is not safe or appropriate for the following reasons: [list reasons]. I am asking to participate in discharge planning so that we can work together to identify a safe and appropriate discharge.”

Remember that the hospital and your family share a goal: a discharge that keeps your loved one safe. Framing your request as working together toward that goal can help.

Prepare an Information Packet

Hospital staff often have limited time to gather a patient’s history, especially if your loved one has moved between facilities or states. A ready-to-send packet can fill in the gaps. Consider including:

A timeline of past hospitalizations
The most recent medical records (if your loved one has signed a release of information, request records from every hospitalization)
Medications that have worked best, and those that haven’t
A summary of current symptoms and recent history

Keep the packet as a PDF so you can send it quickly whenever your loved one is admitted.

Stay Persistent

Advocating for a loved one can be exhausting, especially when you’ve been through the same situation before. Families who see results tend to be consistent: they put their concerns in writing, follow up, and clearly ask not to be included in a discharge plan without being consulted. If you need support, an advocate can help with this work. This doesn’t have to be a lawyer; many types of advocates have experience with hospital discharge. For help finding a healthcare advocate, you may wish to visit the National Association of Healthcare Advocacy. Their website provides a “Find an Advocate” search function.

Additional Resources

HHS: HIPAA Helps Caregiving Connections: an HHS fact sheet explaining how HIPAA allows providers to contact family when a person in a mental health or substance use crisis is unable to make decisions. Families may find it helpful to include with letters to hospital staff.
HHS: Does HIPAA Permit a Doctor to Discuss a Patient’s Health with Family and Friends?: an official HHS answer, written for health care providers, explaining when a provider may share information with a patient’s family, including in emergencies or when the patient is unable to make decisions.
HHS: HIPAA and Mental Health: explains how HIPAA applies to mental health information, including when providers may share information with family members and friends.
HIPAA for Caregivers: educates and advocates for compassionate communication between family and health care providers and provides helpful answers to frequently asked questions about HIPAA.
Focus:PHI: Understanding HIPAA: What Parents Need to Know About Privacy & Their Adult Child’s Health Information: answers common questions about when providers may share an adult child’s health information with parents. Available in English and Spanish.
Treatment Advocacy Center: HIPAA Family Resource: explains how families can share information with their loved one’s treatment providers under HIPAA.
NAMI’s Navigating a Mental Health Crisis: a resource guide to help you navigate a crisis and make a plan for future crises.

Your state’s protection and advocacy agency, which is responsible for protecting the rights of individuals with disabilities, may also be able to help.

We are so glad you found this information. NAMI HelpLine offers a Family Caregiver Service. It brings together family caregivers with shared experiences and equips HelpLine Specialists with knowledge and insights into what helps. If you are a family caregiver and would like support from a peer, we encourage you to call the NAMI Family Caregiver HelpLine at 800-950-NAMI (6264) or send a text to 62640. We are available Monday through Friday, from 10:00 am to 10:00 pm EST.