Stop Facebook from Spying on You...: And Other Ways to Protect Your Online Privacy (2015)

The Other Side of Health Privacy Laws

Not long ago, I learned of a family that was heartbroken by a doctor’s misguided attempts to protect their dad’s privacy. These sons and daughters, in their 30s and 40s, were not told by their father’s doctor that the man’s condition was terminal. As a result, they kept insisting on more tests and treatment for their father, who was not strong enough to object but had told the doctor that he did not want to continue that level of care. The man knew that he was dying and wanted his family to know that, too. But the doctor never advised the man’s children of this crucial fact, citing federal privacy laws. The doctor was wrong about the privacy law.

Numerous cases such as this one came to light at a recent congressional hearing on the federal privacy provisions of the Health Insurance Portability and Accountability Act (HIPAA). Lawmakers discovered that health-care providers often are wrongly denying family members, caregivers and friends involved with a patient’s care vital information that might have life-or-death consequences. One expert suggested that some health professionals are simply using the law to sidestep difficult conversations with family members. To avoid having family members stonewalled by medical personnel, the solution is to simply make sure that you have a list that names all people (including your doctors) whom you want to have access to your health information included in your medical records—and carry a copy of that list in your wallet.

But the other side of the HIPAA laws involves cases in which your doctor determines on his/her own that certain information about your case should be disclosed to family members or others involved with your care—even if those people are not on your list. For example…

When you are incapacitated. If you are unconscious or in another examination room, a doctor may under the law share information if it is in “the best interest of the patient.” For example, a surgeon who performed emergency surgery may inform family members not on your list about your condition while you are still unconscious. But doctors and nurses can reveal only the most basic information, such as whether you came through the surgery well or poorly and your prognosis. Anything that is not directly related to your current care, such as past illnesses or other medical conditions, should not be discussed.

When it benefits you medically. If, according to your doctor’s “professional judgment,” it is to your medical benefit, he can under the law discuss certain matters with family, friends or caregivers who are not on your list. For example, your doctor may discuss with your sister your increased risk of falling if she is driving you home from the hospital.

When you bring someone into the exam room. If you bring a friend or family member into an exam room at your doctor’s office, it is assumed that you have given permission for the doctor to speak freely.

For more on medical privacy rights, go to www.HHS.gov/ocr/hipaa.

Expert Source: Charles B. Inlander, consumer advocate and health-care consultant, Fogelsville, Pennsylvania. He was the founding president of the nonprofit People’s Medical Society, a consumer advocacy organization credited with key improvements in the quality of US health care in the 1980s and 1990s, and is author or coauthor of more than 20 consumer-health books.