If you’re helping take care of a family member or friend who is experiencing mental illness, at some point you will probably want to speak with their healthcare providers about their treatment. Privacy laws are complicated, so it can be hard to know what information you’re entitled to, and how to access it.
The main law governing the privacy of medical records in the United States is the Health Insurance Portability and Accountability Act (HIPAA). HIPAA covers health care info such as treatments, payments, and medical conditions—including mental illness. Medical providers (such as doctors and therapists) are can share this information with family members and friends, if:
- the provider believes it is in the patient’s best interest, and
- the patient hasn’t explicitly said they don’t want the information shared, or
- the provider believes that the patient or someone else is in immediate danger.
HIPAA gives the provider a lot of room to use their own judgment. But HIPAA isn’t the only law that can affect your loved one’s privacy:
- If the patient is receiving treatment for a substance use disorder, that information is protected by a different law, 42 CFR Part 2. This law is more strict. Providers need explicit permission to share any information about the patient’s substance use—including the fact that they’re receiving treatment at all.
- If the patient is a student, their information is protected under the Family Educational Rights and Privacy Act (FERPA).
- Many states have their own privacy laws that add additional restrictions.
If the person is your child, the rules are a bit different. We cover that in a different article.
There’s one type of information that you probably won’t be able to access at all: notes from a therapy session. Your loved one’s therapist might share information about how many sessions they’ve had, or how your loved one is doing generally—especially if they think your loved one is a danger to themselves or to others. But there’s no legal obligation for them to share details about what they talked about. That confidentiality is an important part of therapy.
Getting permission to access health care information
As you can see, it can get pretty complicated. This can be a big headache for you… but it’s also tricky for the provider. Many providers prefer to stay on the side of caution: they won’t share any information unless the patient explicitly tells them to. That keeps the provider out of trouble, but it also protects the patient.
The best way to deal with privacy laws is to get written permission from your loved one to access their health care info. Most providers have their own forms for this, which your loved one can fill out.
It’s also good to plan for emergencies. You can ask your loved one to make you their health care agent. If your loved one is ever in a situation where they can’t make their own decisions, their health care agent can access their health care info and make those decisions on their behalf. A good way of doing this is to help your loved one fill out a psychiatric advance directive (PAD).
Of course, all this relies on communicating openly with your loved one. These conversations can be tough to have. But having them will help your loved one trust you more. If you start calling their providers asking for information without talking to your loved one first, it will feel like an invasion of their privacy—and that will only make your job as a caregiver harder.
What if I can’t access their information?
The flip side of communicating openly with your loved one about this is that they might say no. If that happens, it can be frustrating. It might hurt your feelings. It can make it harder to support them, especially if they reach a point of crisis.
But it’s important to respect their privacy. That’s the only way you can develop a relationship built on trust. And if your loved one doesn’t trust you, it’s going to be harder for you to help them. Health care information can be extremely personal… and for many people, that goes double when it comes to mental health.
If you’re unable to access their information, do the best you can. Come up with a crisis plan. Try to have ongoing conversations with your loved one. Respect their boundaries and don’t keep bringing things up that they’re not comfortable with. But always let them know you’re there and that you want to be involved. As you build trust, they may choose to open up to you more in the future. If they’re completely unwilling to accept help, you may need to reevaluate your caregiving role.
Finally, there’s no restriction on you giving information to your loved one’s providers. If you’ve observed something that you think may affect your loved one’s treatment, you can always contact the office to provide this information.
- U.S. Department of Health and Human Services, Office for Civil Rights. (2017). Information Related to Mental and Behavioral Health, including Opioid Overdose. Retrieved from https://www.hhs.gov/hipaa/for-professionals/special-topics/mental-health/index.html