This is the second week of our series discussing HIPAA regulations with regards to mental health care. In this post, we provide a family perspective.
Good and Bad Experience with HIPAA
As a mother, I have had positive and negative experiences with HIPAA, with an example for each.
The negative event happened when my adult son was hospitalized while I was out of town. I knew he was in that particular hospital because that is where the ER told me they were sending him. His doctor, who had permission to talk with me, was the one to tell me which ER he was in. I called the hospital where I knew he was and tried to tell hospital staff about his medications. The staff person kept insisting that they could not confirm or deny that my son was at the hospital, and they refused to hear what I was telling them about his meds. I knew he was there and didn’t need them to confirm it. What I really needed them to do was to take the information about his medications. They would have it to use if he was there, and they could throw it out if he wasn’t.
The person’s stubborn refusal to take this information didn’t help my son, because they did not know his current medications or history and could not give him what he needed. It didn’t help the hospital, because they were less equipped to treat my son effectively, and perhaps prolonged his stay. And it sure didn’t help me, as my fear about his safety steadily increased. The following day, I was able to speak with a nurse manager. She agreed that the staff person should have taken the information, and was going to inform the staff about the proper procedures.
The positive experience happened at a different hospital. When I called, I did not know where he was, but knew he had been taken to that ER and had been on their unit many times. The nurse who took the call knew me and within my hearing, the nurse asked my son if he could confirm that he was there. My son said, “Tell her I said you can’t tell her that I’m here.” The nurse repeated those words verbatim to me. I told the nurse to tell my son that I would wait to visit until I was invited. This information was fine with me: I knew he was safe and under professional care.
What Needs to Change
There are a few changes that would make a difference for quality of treatment and for peace of mind.
1. Don’t protect location information
Informing a family member that a loved one is in the hospital should not be treated as releasing private medical information. Say, for example, that a person has a heart attack, stroke, or seizure and is not capable of giving consent to communicate. The hospital wouldn’t hesitate to call the family and tell them where the person is. But when a person is psychotic, even if they are admitted against their will, the hospital won’t notify the family. We (medical professionals) tell families things all the time; why does this need to be different?
To me, location is not the same as diagnosis or treatment. But a simple message from a provider—‘your loved one is here at this hospital and I am the one taking care of them’—would give great peace of mind to family members, even if there’s a follow-up statement that the loved one does not want them to visit or to receive any further information.
2. Encourage communication with family members
It’s important to have family members involved in treatment: we are often able to provide perspectives, observations, information, and insights that the patient cannot or will not provide. Let’s train mental health professionals to ask their patients, when stable, to give permission for them to communicate with family members. Even if permission to share information is not granted, patients can be assured, and practitioners should know, that health professionals can say to family members, “I’m happy to hear your point of view, but I can’t share confidential information.”
3. Recognize that people experiencing psychosis lack capacity
Finally, the system has to admit that psychosis results in diminished capacity for making medical decisions. A person with advanced Alzheimer’s disease is considered to be unable to make medical decisions. We should recognize that people are unable to make rational decisions when they have a mood disorder that is affecting their cognitive functioning. It doesn’t have to be so complicated.
Advance Directives Help
Ideally, every person with bipolar disorder or depression would be encouraged by their treaters to prepare an advance directive as part of their treatment plan. It doesn’t have to be fancy, just enough to identify what should happen and who should be involved. Even just identifying who is the preferred treater and who in the family should be notified would be a great help. At the very least the doctor would let the family member know their loved one is safe and could collect information about the person’s history that’s important to know.
Very often, family members can be assets in treatment. We can provide history, perspective, and loving support. Even a flawed family deserves to know that their loved one is safe. Mental health providers might be limited by the current laws, but this can and should be changed.
The HIPAA Privacy Rule does make allowance for when a patient is unable to authorize disclosure due to incapacity.
- What do you think should be the criteria for defining incapacity?
- Outside of incapacity, what are other circumstances that should allow for the overriding of patient privacy protections as outlined in HIPAA?
Nancy Sharby is a health professional who lives in the Boston area, and is a member of the Families for Depression Awareness Advisory Board. Nancy shares this perspective as the mother of adult children with bipolar disorder, who has experience with emergency room and inpatient treatment at hospitals.