As the parent of a young adult with mental health issues, I’m no stranger to the hospital psychiatric unit. I’m usually numb with worry, waiting for information about my daughter. Of course, providers don’t share any information. This is because my daughter won’t sign a HIPAA release form.
Often the reason she refuses to sign is because she is angry with me for taking her to the ER. However, given her words and actions, there was no choice. Early on, I kept a written history of her behavior, medications, and hospitalizations. I make a point to stay calm, practical and focused when speaking with the care team. I also recently learned that “implied consent” is an option, instead of a written release form, if the doctor chooses. My knowledge about implied consent came after my daughter’s most recent hospitalization. But, now I feel confident that I can bring it up should I be faced with another crisis.
Privacy Laws & Mental Health
HIPAA was written to protect patients’ rights. However, a growing number of mental health advocates contend that the privacy laws do more harm than good when dealing with serious mental health conditions. People with serious mental ailments often need help making decisions and taking care of themselves. This is because their illness can impair their judgement. Still, many health care providers don’t fully understand what HIPAA actually allows them to say. As a result, they often will not communicate with families. And in many circumstances, they are legally allowed to share information.
Families Help in Recovery
According to a 2016 article in USA Today, deaths from suicide, drug abuse and injuries were 90% lower among people with schizophrenia whose families were involved in their care.(https://www.usatoday.com/story/news/2016/02/26/privacy-law-harms-care-mentally-ill-families-say/80880880/) The article also states that health care providers may fear repercussions if they share information to caregivers, even if it can help the patient. However, the Department of Health and Human Services, which oversees HIPAA enforcement, has fined health providers just 30 times since 2003. None of these fines involved the care of people with mental illness or their caregivers.
According to the article, Lisa Dixon, a professor of psychiatry at Columbia University Medical Center, says she can usually persuade patients to include their families. This is in spite of HIPAA obstacles. She says that people with mental illness are often willing to include their families in their care. However, doctors must take the right approach. More than 90% of the patients in the OnTrackNY program that she directs, have agreed to allow contact with families.
The article says that Dixon asks patients why they may be reluctant to include their loved ones in their care. “We ask, ‘What are your concerns? Why would not want your family involved in your care?’ Sometimes, they don’t want to be a burden.” With this approach, Dixon says, it’s only the rare case who doesn’t give permission. And if your loved one won’t grant permission right then, they may grant permission the next day if they are asked.
Getting Implied Consent
So, God forbid, if I am ever sitting in a psychiatric unit again, here is what I will do to try and get implied consent:
- Inform the care team that I am her mother, she lives with me and I love her very much. I help take care of her and I am financially responsible for her.
- Provide a written history of her past mental health information, including medications.
- Ask the doctor to tell her they would like to share information with me so that I can help and support her.
- Ask the doctor to to ask about concerns in communicating with me, then try and dispel those concerns.
I might ask the doctor to speak with her about consent after she has been in the hospital a day or two. This gives time to let her anger subside, which it always does. Doing these things is no guarantee that a physician will use implied consent, but it’s the best chance there is. Health care providers and HIPAA laws should acknowledge the value of family in a patient’s mental health plan. Providers need to know that loving family members and/or friends are a valuable, integral, necessary part of a loved ones recovery. Until they feel comfortable sharing vital information, we will be left in the dark.
Necessary changes to HIPAA rules may be coming in the future. Hopefully, this will open the door to physicians sharing information without fear of negative repercussions. Until that day comes we, as caregivers, must do everything we can to show that it is in the best interest of our loved one for information to be shared.