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Stop muzzling doctors

Reform HIPAA’s Privacy Rule for the sake of treating the most severely mentally ill

By Robert Laitman

Serious mental illness (SMI) causes untold suffering. After treating severe illness for the past 15 years, I have learned that doing so is a team sport.  

When dealing with someone affected by psychosis, it is imperative that loved ones are involved in clinical care. When someone is psychotic and detached from reality, and is suffering from anosognosia, or a lack of awareness of their illness, corroboration is essential before meaningful treatment can begin.  

HIPAA, The Health Information Portability Affordability Act of 1996, was designed with the benevolent goal of protecting patient private information. But in practice, the law hurts, not helps, patients with SMI.  Since then, there has been considerable confusion in how this law should be applied. Too often families and patients suffer when critical information is withheld in HIPAA’s name.

In December, the Department of Health and Human Services proposed making changes to the HIPAA Privacy Rule in order to improve information sharing and facilitate “greater family and caregiver involvement in the care of individuals experiencing emergencies or health crises.” These changes cannot come swiftly enough.

When patients in the throes of psychosis refuse to involve their families in care, and psychiatrists are forced to comply with those misguided wishes, disaster can ensue.

Take the example of one of my patients who was recently admitted to the hospital and told the treating psychiatrist not to talk to his family or me. I informed her that I had been treating the patient for co-occurring substance abuse and bipolar illness with psychosis, and that he lacked awareness of his mental illness. She decided to “honor her patient’s HIPAA rights,” and ignored my information, refusing to communicate with the family or me. Deciding that his only issue was substance abuse, she discharged him without prescribing him any medication. Hours later, he was wandering the streets psychotic and newly infected with Covid-19.

For the last 15 years, my wife and I have been on a mission to change outcomes like those. We believe that meaningful recovery for people with SMI is possible with appropriate treatment and support. What leads us to that belief, besides having a son who has successfully navigated schizophrenia to become a stand-up comic, is our shared background in internal medicine.

As a geriatric subspecialist, I learned early on that if I were to have good outcomes, I would need strong family support. Many of these same geriatric patients would often tell me not to involve their families. What I learned to do was use my best judgment. Sometimes that meant communicating patient information to family members, despite their objections.

As a licensed medical professional, my failure to do so would be considered lazy, nihilistic and self-defeating -- essentially medical malpractice. Not respecting a patient with anosognosia’s HIPAA rights enabled me to engage not only the patient, but the family as well, thus allowing me to provide the best care.

When, for example, one of my elderly patients tells me that their daughter is only out to get them or their money, and there is nothing wrong with them, so do not speak to their family, I am obligated to assess the mental fitness of that elderly patient. I know that to do so, I need to talk to the family, regardless of any HIPAA concerns, and digest whatever information the family can provide. That is an essential part of being a doctor that the law cannot and should not proscribe.

In my practice, we never let HIPAA get in the way of appropriate care and that means active family support. 

HIPAA must be reformed in at least three critical ways to ensure that people with serious mental illness will always have their concerned families involved in their care: 

First, we need new guidelines that state that the treating provider must talk with the family and should always get corroboration of any facts provided by the patient. When the patient is not thinking straight, fully sharing information with the family regardless of the wishes of the patient’s wish should be an imperative.

Second, the guidelines need to clearly state that the treating provider cannot be penalized for doing so.

Finally, the guidelines should state that providers can only be punished for withholding information from family members.

It’s time for Congress to reform HIPAA and end the insane notion that doctors shouldn’t be allowed to share patient information with family members for the sake of their care.

We can overcome learned helplessness and hopelessness by engaging both patients and family members as critical allies. I am tired of watching people needlessly suffer. 

With a different approach, outcomes can be outstanding. I know, because I have witnessed this success firsthand, with my patients and even my own son. We just need to find the will and be relentless in our pursuit.

Dr. Robert Laitman practices psychiatric internal medicine in New York City, alongside his wife, Dr. Ann Mandel Laitman, and is a co-author of “Meaningful Recovery From Schizophrenia and Serious Mental Illness with Clozapine: Hope and Help.”