Don’t Hide Behind HIPAA to Avoid Communicating with Caregivers!

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 In May, Carol Levine posted about how HIPAA (the Health Insurance Portability and Accountability Act) interferes with caregiving for the elderly by leading many health professionals to refuse to communicate with families and others involved in care of the elderly. Carol subsequently interviewed Leon Rodriguez, director of the Office of Civil Rights at the Department of Health and Human Services, who is responsible for enforcing the HIPAA rules about privacy and information security. With Carol’s permission, Jim Sabin derived this post from that interview.

Here is Rodriguez’s key guidance for clinicians dealing with elderly patients and their families:

 I am fond of saying that HIPAA is a valve and not a blockage . . . if a patient doesn’t object to a provider sharing information with a family member, then that is permissible under HIPAA. HIPAA does not require patients to sign a release to allow family members to be present when the patient is receiving care or talking to doctors.

 If, however, the patient does flatly object, then we need to look at whether there are circumstances that might warrant sharing the information. Is the patient incapacitated? Is the patient communicating information about a serious threat? In those circumstances there might be authority for disclosure. So, it’s meant to be a commonsense scale. In these situations we give the provider real room to make a judgment about honoring the patient’s wishes but also determining what is in the patient’s best interests. (emphasis added)

 On the access side, providers frequently make it overly difficult for patients to get their chart. HIPAA expressly gives patients the right to this information. Sometimes providers don’t share information with each other because of misperceptions that HIPAA is a barrier, which it isn’t. For example, if there are two physicians involved in a patient’s care–one an internist, one a specialist–they clearly need to communicate to best advance the patient’s treatment.

 . . . Fear of liability comes from providers and the legal community that serves them confusing the Office of Civil Rights approach to privacy enforcement with fraud and abuse enforcement, where there has been a lot of liability, and appropriately so. When we do an enforcement action, it usually focuses on either serious security failure with respect to health information or clearly egregious disclosures of health information. For example, releasing health records about a celebrity to the tabloids leads to liability.

 If a provider makes a judgment that disclosure is in the interest of the patient–even if we determine there was a violation–that would normally be handled through corrective action. We would help the provider to develop policies and procedures in compliance with HIPAA. (emphasis added)

 . . . I do want institutions to be very worried about the security of their data and protecting health information. I want them to have policies and procedures that protect against flagrantly inappropriate disclosure of health information. But I don’t want them to make doctors afraid of their shadows and lead them to withhold vital information from patients and their families. (Emphasis added)

 To my (JS’s) eye, Mr. Rodriguez is reassuring clinicians that if they act with good intentions based on their understanding of what is best for the patient, they have nothing to be afraid of from the HIPAA privacy regulations. This matters. Some clinicians who want to work with caregivers are inhibited by fear of breaking a rule and being sued or otherwise punished. Others may want to avoid working with caregivers and use HIPAA as a rationalization for avoidance.  Working with caregivers can be challenging and time consuming, but Carol Levine’s interview of Leon Rodriguez makes it clear that HIPAA does not pose an impediment to thoughtful, compassionate care.

 Carol Levine, 78, is director of the Families and Health Care Project of the United Hospital Fund. She was awarded a MacArthur Foundation Fellowship in 1993 for her work in AIDS policy and ethics. Jim Sabin adapted this post from her interview with Leon Rodriguez. The full interview is available online at Aging Today.

5 Responses to “Don’t Hide Behind HIPAA to Avoid Communicating with Caregivers!”

  1. Jed Levine

    Thank you Carol for posting this blog. It is very timely as we (the Alzheimer’s Association, NYC Chapter) are dealing today with a missing person with dementia and other medical conditions who lives in a home for adults, and the administrator is citing HIPAA as a reason why he cannot talk to us. The police are on the case, and our MedicAlert+SafeReturn Protocol of faxing lost patient bulletins to every hospital, etc. in NYC, so he will hopefully be found and returned home soon.

    • Carol Levine

      Jed, I hope your client was found safe and that the administrator advised of accurate information about HIPAA. Carol

  2. Nancy Mott

    I’m glad to see these issues addressed. I think about them every time I fill out forms with a health provider and am asked, “With whom may we discuss your healthcare information?”

    I endeavor to list everyone I think would be in a position to be asking: my partner, my three children, my partner’s children. I suppose I someday will be adding the names of my grandchildren. And as to what kinds of information can be shared, I check every category listed.

    I want my providers to feel safe supplying information to those who love me. In addition, of course, I have a Living Will with instructions that are as clear as I know how to make them.

  3. Carol Eblen

    Another reason why the Power of Attorney for Health Care is superior to the living will in every way. The POA allows the trusted individual who loves you to make decisions for you when you are not able to do so and when it is pertinent. The legal surrogate, the person with the POA, has access to all of your records and is your legal representative under state law. It is with this person that individuals should leave their “advanced directive” in my opinion because, of course, advanced directives can be misinterpreted and misapplied in the actual interpretation of the words.

    Unfortunately, it is difficult for patients to access their own charts within hospitals because of local rules. Obviously, when a patient wants to access the chart, this is a “red flag” and the supervising nurses always notify the “treating” physician who wants to be present when the patient and family looks at the chart.

    Good to know that those of “good will” do not misuse HIPAA to withhold vital information from families.