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HIPAA Help for Families Coping with Mental Health Conditions

Your Guide to Communication with Your Loved One’s Care Team

When a loved one has a mental health condition, everyone in the family is impacted.  Thankfully, there are many ways HIPAA allows compassionate communication between loving families/caregivers and health care providers.  Unfortunately, you may not be aware of them.  And, frequently, health care providers avoid them.  We tell you the HIPAA facts that offer help for families – facts that help you support your loved one.

Who are “caregivers” and “loved ones”? …

    • “Caregivers” and “family” are used to mean the same thing – anyone who is supporting a loved one with a mental health condition.  We use the word “caregivers” because it’s a general term.  A caregiver could be a good friend, too.
    • “Loved one” refers to the person with the mental health condition.  This may be a parent, child, or very close friend.
Raging river representing the need for help for families coping with mental health conditions

In Crisis?  Here are Five Important HIPAA Facts that Provide Help for Families

Increase Communication with Your Loved One’s Care Team

Download 5 Important HIPAA Facts

These HIPAA facts help families coping with a mental health crisis

HIPAA protects the privacy of patients.  As a result, conversations between the patient and their doctors can exclude you, the caregiver.  Nevertheless, the people who oversee HIPAA know there are times when doctors should talk with families.

The agency in charge of HIPAA is the United States Department of Health and Human Services (HHS).  And, if you are interested, HHS documents about patient privacy are listed in our Resources page.  

However, we wanted to make it easier for you.  Therefore, we boiled down some key points.   They are the five basic facts that are important for you to know during crises.

By the way, for simplicity, we use the word “doctor” a lot.   However, you can substitute the term “health care provider” anywhere “doctor” is used.

Fact 1:  There are three ways patients can consent to share health information with caregivers.

Usually, caregivers must have their loved one’s permission before a doctor can talk with themHowever, HIPAA does not require consent to be a physical signature.  Instead, doctors can talk with families if the patient gives permission any of these ways:

Signed consent:

Optimally, the patient signs a release-of-information form provided by the doctor’s office or hospital.

Verbal consent:

When asked, the patient says it is fine for a doctor to talk with their caregivers.

Implied consent:

A doctor might tell the patient that he or she wants to speak to the patient’s family.  Or, a doctor might talk with a patient while family is in the room.  As long as the patient does NOT object, a doctor can safely assume that it is fine to talk with the caregivers.

Fact 2:  There are some exceptions where consent is not needed

Three circumstances allow doctors to talk with caregivers without the patient’s permission.  And, these are called “exceptions.”

Emergency

The patient is deemed to be in a psychiatric emergency.  In that case, the patient is usually in the Emergency Department or the Psychiatric Emergency Department.

Incapacitation

The patient is considered not capable of make a decision for themselves.  For instance, psychosis, extreme intoxication, drug overdose, or unconsciousness are all conditions that would make this true.  NOTE:  A decision that a person is incapacitated can be made by a doctor and does not require a court order.

Threat of Harm

The patient poses a threat of harm to themselves or others.

Fact 3:  Doctors are never required to talk with families.

In the case of the three exceptions above, doctors are allowed to talk with caregivers.  However, they are never required to.  Therefore, do everything you can to show the doctor that talking with you will benefit your loved one.

Fact 4:  Families can always give information to doctors.

On the other hand, caregivers can always give a doctor information about their loved ones.  Thankfully, nothing in HIPAA says you cannot provide this “one-way information.”  Similarly, there is nothing in HIPAA that says that a doctor cannot listen to a caregiver.

Fact 5:  There is a way for caregivers to seek confidentiality in their communication.

A doctor is not supposed to share information received from a caregiver with the patient if two conditions are met.

        • The caregiver asks the doctor to keep the communication confidential AND
        • The doctor promises not to tell the patient they spoke to the caregiver.

Disclaimer

Because we’re not lawyers, guidance from HIPAA for Caregivers is not a legal opinion.  This applies to all information in this website.  In addition, it is true for email or any other type of communication.  

Instead, we tell you about resources that are available to the public.  And, we cite the sources.  That way, you can easily find the original documents.   

We recommend that you use the original sources to verify our points.  Also, please use them to make decisions in your own situations.  Conveniently, our Resources page contains links to all our sources of information.

Testimonials

Families of individuals in a mental health crisis often feel confused and lost about privacy laws. They want to be involved with their loved ones’ care, but feel locked out of it at times. The HIPAA for Caregivers website has helpful information to assist family members and caregivers in navigating this perplexing issue.

Victor Hong, MD

Medical Director, Psychiatry Emergency Services, Michigan Medicine (University of Michigan Hospital)

This is the most comprehensive and helpful website I have seen for caregivers of people living with mental health challenges. The education and advocacy tools provided apply to anyone – including providers and patients – attempting to understand and communicate within HIPAA federal privacy rules. The more everyone knows about HIPAA the better, and effective communication is essential to improving outcomes for people who are suffering and their loved ones.

Bob Nassauer

Volunteer and State of Michigan Trainer for the 8-Week Family-to-Family Program, National Alliance on Mental Illness (NAMI)

The website provides easily understandable information and “frequently asked questions (FAQs)” to inform providers and advocates about HIPAA and how treatment alliances can be strengthened without violating the privacy rights of persons with mental illness. The information is broadly relevant for mental health stakeholders throughout the nation. It is a terrific new resource on a topic that has been sadly neglected for far too long.

Ron Honberg, JD

Former Director of Policy and Legal Affairs, National Alliance on Mental Illness (NAMI)