HIPAA Patient Privacy Laws and Caregivers

By Dorothy Foltz-Gray. Medically reviewed by Tom Iarocci, MD. May 7th 2016

As a caregiver, your loved one depends on you. So, you want to get as much information as you can from your loved one’s doctor. However, the doctor may not be able to give it to you — a possible result of the HIPAA Privacy Rule.

“HIPAA allows a provider to discuss care and payment with a family member or friend, if a patient agrees or if the provider can determine, in his or her professional judgment, that the patient does not object to the sharing of information,” says healthcare and HIPAA legal expert Stacey Gulick, a partner at Garfunkel Wild, P.C. in New York City.

For instance, if a patient walks into a doctor’s office with her spouse or family member, the doctor potentially can assume this person is a caregiver who can be part of the conversation. But a patient can also object and override the doctor’s decision, a situation that may occur if the patient suffers from dementia.

Patients are also not required by HIPAA to sign a release form, although some providers may ask them to do so.

What If Your Care Recipient Has Dementia?

If your loved one is no longer able to make health care decisions — such as if he is unconscious or has Alzheimer’s — state laws may come into play, says Gulick. In some states, laws may indicate who should be surrogate or substitute decision makers, such as a family member, domestic partner or close friend.

“If state law provides no guidance, the provider can rely on his professional judgment,” says Gulick. “But he or she can only provide information necessary for the recipient to provide care or arrange for payment.”

If a caregiver wants to pick up prescription drugs, medical supplies or X-rays for the loved one, again, the provider can release the materials if he believes it’s in the best interest of the patient.

The particular problem of dementia has been recognized, and the U.S. Department of Health and Human Services is working on clarifying HIPAA privacy rules “to ensure that health care providers can engage in care planning with family members.”

Next Steps

For now, fortunately, there are ways to avoid running afoul of the HIPAA Privacy Rule. Here’s how:

  • Prepare for the future. If you can, try to persuade your loved one to work with you and arrange for documents that name you as a healthcare proxy or that give you power of attorney, suggests Gulick. You may find the healthcare proxy forms for some states online, and you can also find power-of-attorney forms online. “Some states may require notarization or witnesses,” says Gulick.
  • Be unified and work closely with providers. “The more familiar a provider is with a caregiver, the more likely he or she is to give the caregiver information,” says Gulick.
    “If all of a sudden, a second cousin shows up whom the provider has never seen before, that’s harder. It also eases a doctor’s reluctance if one family member, not several, is the point person. Providers tend to be much more comfortable when there is consensus in the family.”
  • Find an attorney. If you begin to see that your loved one is losing the ability to make sound decisions about healthcare and other important items, you might look into hiring an eldercare, trust or estate attorney. Gulick explains, “These attorneys can help establish you as a healthcare proxy and help with decisions regarding finances.” To find an attorney, contact your state bar association and ask family and friends for recommendations.

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