The Backwards HIPAA Rules for Mental Health, Explained

It was 2015. I had a picture-perfect marriage, lived in an affluent neighborhood, married Jay, a banking executive, and had three beautiful children. Yanked suddenly from this illusion: my loving husband transformed before my eyes, filed for divorce, and became hellbent on my destruction.

Jay’s behavior began shifting violently between manic and depressive episodes, wreaking havoc on the domestic bliss we’d once enjoyed. I finally had a wake-up call: my husband suffers from undiagnosed bipolar disorder. My sanity, physical health, faith in humanity, pocketbook, and welfare of my children and husband eroded. I knew one thing only; I had to save my husband from himself.

Dr. Frankford, Jay’s psychiatrist, was the only person where I could present Jay’s symptoms, and she could re-access Jay’s initial diagnosis of “Adjustment disorder.” Jay’s father, a psychiatrist for over 35 years, would back me up to ensure I didn’t appear to be a lying psycho ex-wife out to get her soon-to-be ex-husband.

I dialed Dr. Frankford’s office. I falsely claimed Jay would be attending with me, the only way to secure a consultation.

I entered the tall glass building in Evanston, a quaint town about twenty minutes from our home. As I rode up the elevator to Dr. Frankford’s office on the seventh floor, an overwhelming feeling of joy and satisfaction overcame me.

Armed with a signed HIPAA override document (dating back to 2012) and six pages of Jay’s symptoms over fifteen years, I smiled as I sat in the waiting room. I was handing Dr. Frankford a golden ticket, confident that the truth would prevail. I informed the staff that my husband hadn’t arrived yet, knowing he’d never show up.

I knew I must have a convincing performance, or my 14-month-old baby, two other children, and Jay may be harmed. The future of my family was at stake.

“I’m sorry, but Dr. Frankford will not see you,” she informed me. “Your husband isn’t here, and he hasn’t signed a release. Your document only gives you access to Jay’s medical records.”

Desperation took over as I dropped to my hands and knees. Tears welled in my eyes.

“Please, let me see Dr. Frankford. I have a 14-month-old baby! My husband is very ill and needs your help! I am a loving mother and wife, looking out for my family’s well-being; my children are in danger due to their father’s mental illness!”

I rattled off a laundry list of disturbing behaviors, but she wouldn’t budge.

Problem #1: HIPAA laws do not allow the spouse to visit the patient’s psychiatrist unless

1) the patient signs release forms OR

2) The patient is present during the visit.

Jay was in the crutches of a severe manic phase. Jay viewed me as the enemy and repeatedly refused to sign papers or visit the psychiatrist. This is a dangerous scenario, especially in cases where the patient is misdiagnosed and in the middle of a highly destructive manic phase.

Rule #1. Make sure you have the legal authority to speak to your loved one’s psychiatrist and therapist when they begin a treatment plan. You may sign all release forms immediately; however, this is not a full-proof strategy because if the patient finds out, they may override or void these documents. A long-term plan must be put in place.

Petition policymakers to modify the HIPAA law to allow select loved ones or family members to access the patient’s therapist and psychiatrist for ALL patients with a psychiatric history on record.

An exception to the existing law must be made when the family or loved ones believe that the patient and their children are in grave danger. No prior arrests or police records for the patient need to be on file. The patient can be diagnosed with ANY mental condition. The patient’s loved one or family should have the right to speak to the loved one’s psychiatrist and therapist directly and without any hesitation or laws broken.

Problem #2 Even if I had the legal authority to make health care decisions for Jay, the healthcare provider still had the absolute power to halt all communication between the doctor and me. If the psychiatrist believes I am endangering the patient or not acting in the patient’s best interest, this can occur.

Jay’s psychiatrist did not think very highly of me. Jay, while manic, had an exceptional ability to fool even the brightest of doctors, therapists, and lawyers. Jay’s doctor was convinced that I needed mental help, not Jay. This is beyond irresponsible of the healthcare system, which is not looking out for the patient’s welfare or their loved ones.

Problem #3 The health care provider can determine whether to treat you as the patient’s representative and, thus, whether you can access all of the patient’s treatment information(or not).

The power to determine access to the patient’s health-related information should NOT lie solely in the hands of their psychiatrist.

Jay had chosen an incompetent doctor who did not have strong clinical judgment. My life and my children’s life was in the hands of a foolish doctor who cared more about what she had for lunch that day than her patients.

Problem #4: Where the patient is present and can make health care decisions, health care providers may communicate with family members, friends, or other persons that the patient has involved in his health care or payment for care, so long as the patient does not object. See 45 CFR 164.510(b).

The provider may ask the patient’s permission to share relevant information with family members and tell them they plan to discuss the report. The patient is allowed to agree or object.

Problem #5 Jay did not position me as a supportive wife to his psychiatrist. Why would he? We were in the middle of a divorce that his manic mind created. He objected to every measure I took to protect him, myself, and our three children.

“You need to leave,” was the staff member’s stoic response.

“I am NOT leaving until I speak with the chief psychiatrist!” I exclaimed. “If something happens to my husband or my children as a result of Dr. Frankford’s lack of care or misdiagnosis, I will sue this practice so fast; your head will spin!” I yelled.

Ensure you have the authority to make health care decisions for your loved ones when they have ANY mental illness (bipolar disorder, anxiety, etc.). There may be a time whereby they are incapacitated and cannot make mentally sound decisions. Their reckless, uninhibited behavior may take over. You may regret the day you didn’t make plans for the worst. Consult a lawyer for advice.

Problem #6 If the patient cannot make decisions or communicate due to incapacity, his healthcare providers may use their professional judgment to determine if sharing specific information about his health condition is in their best interests. A few examples include when a patient has suffered from an opioid overdose, is unconscious, delirious, or sedated.

Well, Jay was never in a state whereby he could not communicate due to incapacity until he was suicidal and amid the darkest depression I’d ever witnessed. HIPAA allows a situation to get a dangerously low point before qualifying any loved one to support the patient. It is no surprise that between 25 and 40 percent of all bipolar patients will attempt suicide at least once in their lives. HIPAA is being reactive to a negative situation instead of proactive to a more viable solution before a negative outcome occurs. What if we are too late?

Rule #4: Make sure to involve yourself in your loved one’s mental health journey early on. This may mean visiting the therapist or psychiatrist together on occasion. Build a report with your loved one’s clinical team.

Given that bipolar disorder is misdiagnosed for one decade or more in 69% of patients, these HIPAA laws can be a cyclical catastrophe for families that never ends. When a patient has mania, they usually refuse treatment, refuse any loved one to help them, and do not think there is anything wrong. This is the disease, not the patient.

HIPAA is playing with fire. HIPAA is playing with lives and relying solely on the clinical judgment of the physician instead of the clinical history provided by the family. This is a dangerous proposition, especially in cases where the patient is misdiagnosed and in the middle of a highly destructive manic or psychotic phase.

Protect our loves when they cannot protect themselves.