How to Get Doctors to Talk with You About Your Loved One

by | Dec 19, 2021 | HIPAA Hints

Do you know there are things you can do to get doctors to talk with you – family members or caregivers – when your loved one has a mental health crisis?  As you might guess, I am talking about the case where a loved one is not a minor and is not giving consent for doctors to share information. 

No matter what the exact situation, this is terribly difficult for families.  An additional complication is the fact that your ability to talk with doctors varies depending on the circumstances.

This article will discuss your options in the following three cases.  Your loved one…

    1. … has been brought to a hospital emergency room due to a mental health crisis.
    2. … is seeing a mental health professional and has told that person not to share information with you.
    3. … is at a federally supported program that diagnoses or treats substance use.

 

1.  Steps you can take to get hospital emergency room doctors to talk with you

The HIPAA Privacy Rule provides these exceptions that allow doctors to talk with caregivers without patient consent.

    • When a person is not present, is incapacitated, or is in an emergency circumstance.
    • When a person is threatening harm to themself or others.

One or more of these exceptions are usually at work when a loved one has been brought to a hospital emergency room.  As a side note, information on these exceptions can be found on our FAQs page.  Specifically, see FAQ 5 for details about when someone can be considered incapacitated or in an emergency situation.  And, for “threat of harm,” click on FAQ 6.

There is one additional caveat that you need to know – health care providers are never REQUIRED to talk with family or caregivers.  Nevertheless, when these two HIPAA exceptions are at work, providers MAY talk with you if, in their professional judgment, doing so would be in the best interest of your loved one.  So, your job is to show them that it would be best to talk with you. 

Now, let’s look at some practical ways you can improve your chances of talking with your loved one’s doctors in a hospital emergency room.

Prepare ahead of time

HIPAA always permits health and mental health care providers to accept information from families and caregivers.   Therefore, it is important to prepare written information in advance to share with your loved one’s mental health care providers.

    • As soon as you are concerned about your loved one’s mental health, start logging their behavior regularly. Note how well they are doing their activities of daily living like sleeping, eating, and showering.  Also make notes about their demeanor, how much they are socializing, and if they are working (whether it be school or a job).  Include anything you think might be valuable for a doctor to know. 
    • As time goes on, start summarizing your observations. If you believe that a mental health crisis may be brewing, periodically email this health summary to yourself.  That way, it will be handy if an emergency situation arises.
    • Consider whether it might be wise to share your concerns in advance with your local community behavioral health organization.If they are ever called in by the police, it can be helpful for them to know your loved one’s background as well as your contact information.  They may call you if something happens. 
    • If your loved one is seeing a health care provider, you might want to also let that person know how concerned you are about your loved one.
    • Decide on one person who will be the point of contact with your loved one’s health care providers, should it be necessary.
    • If your loved one family has developed a psychiatric advance directive (PAD) containing information about who they trust to receive information and help with decisions during a crisis, make sure to share this with his or her health or mental health care provider. More information about psychiatric advance directives is provided below.

Be present and proactive when a crisis unfolds

Now you’ve reached the point in time when your loved one is brought to a hospital.  We suggest you do the following:

    • If you are with your loved one when they are put into an ambulance, follow the ambulance to the destination.  That will be the only way you will know for sure where they are brought.  If your loved one is being transported by a law enforcement officer, ask that officer where they will be taking him or her.
    • Once you arrive at the facility where your loved one has been taken, go into the waiting room and talk with the administrative staff. Right away, tell them the person who just arrived is a loved one.  In this and all upcoming steps, be as kind and helpful as possible.  The professionals you are meeting have taxing jobs.  So smile.  Compliment them.  Tell them how much you appreciate everything they do.  By doing so, you show you are a supportive person in difficult situations.  Additionally, if you have the written summary, hand it to the staff and let them know that it will be helpful to them in evaluating and treating your loved one.
    • Next, make sure the staff know the caregiving nature of your relationship. Include information about the ways you are supportive.  For instance, you might explain that your loved one lives in your home; you provide food, transportation, internet, phone, and/or money for schooling.  You do everything you can to help them.
    • Also, discuss the payment for the visit. Provide the health insurance information if your loved one is on your insurance.  If you are not responsible for the payment, you could ask the staff if they have any questions about how your loved one’s care will be paid for.  Do your best to answer their questions.

Tell everyone that you need to talk with the doctor who evaluates your loved one

Next, be proactive about trying to get that face-to-face meeting with health care professionals responsible for treating your loved one. 

    • Tell the administrative staff at the main desk you definitely want to talk with the supervising doctor for three reasons.
    • First, you have vital information about your loved one’s historical behavior and current state of mind. It will help them truly understand the problem.
    • Second, you believe that a HIPAA exception allows doctors to talk with you without patient consent. This would be true if your loved one is “incapacitated” or presents a “threat of harm.”  For instance, you could explain how you believe your loved one is currently psychotic and, therefore, should be considered incapacitated.  Or, you could explain that your loved one presents a threat of harm to himself or herself because of a lack of food or sleep.  Note that HIPAA doesn’t require a doctor to talk with you.  However, knowledgeable doctors should recognize this language.  And, hopefully, they will understand you care about your loved one and trying to be part of the care team.
    • Finally, you are desperate to know how best to help your loved one since you will be responsible for care after your loved one leaves the treatment facility.
    • The staff may tell you that a social worker will reach out to you. That is fine.  Be as helpful to that person as you can.  Relay all the information in the health summary you created (and emailed to yourself before the crisis).  However, also tell them you still want to talk with the doctor.  Relay that it is critical – you must get the doctor’s professional advice about how to help your loved one.

Now it is in the hands of these people to convince doctors that they should talk with you. 

 

Stay for as long as it takes

    • Stay at the hospital, in sight of doors your loved one would exit if released or transferred. If your loved one is transferred without your being told the destination, follow the ambulance.  Once your loved one arrives at the next location, repeat everything you did before.
    • It may take a long time – hours – for your loved one to be seen by a doctor. So, be patient and wait it out.  Every hour or so, you might want to nicely check in with the staff to see if there is an update on the progress through the process.  Gently remind them how important it is for the doctor to advise you how to help your loved one.
    • In the end, your loved one will either be discharged, transferred, or admitted for a 48-72 hour psychiatric hold. The initial goal is to get doctors to talk with you before any of those things happen.  If it does happen that your loved one is admitted for a full psychiatric evaluation, we suggest that you also request to be contacted and informed about next steps after the evaluation is completed.    

Doing these things during a crisis will not guarantee that a doctor will talk with you.  However, these steps will give you a fighting chance of being able to convince doctors that involving you in a medical discussion is in the best interests of your loved one.

 

2.  What if your loved one has made it known that they don’t want doctors to talk with you?

Once a patient has capacity, a doctor is required to respect their desires about sharing information with caregivers.  That is the law.  Unfortunately, this is often heartbreaking for caregivers.  The truth is, we understand that it would be better for our loved one if we knew more about how to help them.  Also, it helps our psychological state, which, in turn, helps our loved one.  If you are being kept in the dark, the best path forward is to try to work with your loved one and their doctor to change the situation. 

A first option involves you talking with your loved one about including you in medical discussions.  Once your loved one has made progress in their recovery, gently approach the topic.  Hopefully, at some point, your loved one will see the wisdom in involving you during a crisis.   If that happens, you might also bring up the idea of creating a psychiatric  advance directive.  This is a document that you and your loved one would work on together.  It would state their wishes regarding the extent to which doctors can talk with you during a crisis.  You can find out about whether your state has a law authorizing psychiatric advance directives at nrc-pad.org.  

A second approach is to ask the doctor to try to convince your loved one to consent to share information.   In this USA Today article, Professor of Psychiatry Lisa Dixon states that, through the use of thoughtful conversations, she is almost always able to get permission to talk with caregivers. 

And always remember – doctors will only want to work with caregivers if they are confident it will benefit their patient.  You need to help them understand how much you help your loved one.

 

3.  No HIPAA exceptions apply in federally supported programs that diagnoses or treats substance use.

Unfortunately, at a federally assisted program that diagnoses or treats substance use (eg. an addiction recovery center), the HIPAA Privacy Rule does not apply. Instead, the sharing of personal health information is dictated by a federal regulation known as 42 CFR Part B.  FAQ 8 on our FAQ page provides in-depth information on this subject.  Unfortunately, 42 CFR Part B completely prohibits health care providers from saying anything at all to you without consent.  If your loved one is at such a place, we recommend you take the same approach as above, in #2. 

We want to be clear, howeverthat the definition of such places is very narrow.  For instance, it would not include a general hospital emergency room or psychiatric emergency room.  Instead, these would be locations that specifically advertise their main function as diagnosing or treating substance use problems.  It is possible, though, that a loved one could be transferred to such a center from a hospital if there is a history of substance use.

 

Success is possible – there are pathways to get doctors to talk with you.

It can be possible to be involved in medical discussions with health care providers during a loved one’s mental health crisis, even without patient consent. 

How?  Be dedicated to and hopeful about your loved one.  That can be hard.  Following the steps we recommend takes time and energy.  But it is something you can do.  With so many things out of your control, you can still rely on your ability to observe, write about, and follow through with positive steps that could make everyone’s future brighter. 

So, have faith in yourself, health care providers, and your loved one.  And do the work necessary to make that brighter future more likely.

 

Hope Klein is the pen name of a contributor who prefers, for the sake of her loved ones, to write anonymously.  The content has been reviewed and approved by the HIPAA for Caregivers staff.