DEAR READERS: After the letter from "Frantic Mom in Philadelphia" (Jan. 30) was published, several physicians wrote to express concern that I was suggesting that doctors violate the HIPAA laws by talking to families without consent. This is not what I was suggesting. The goal of HIPAA (Health Insurance Portability and Accountability Act) is to protect patient information and standardize the transmission of patient health information between health organizations.
The Health and Human Services Office for Civil Rights Web site (www.hhs.gov/ocr/hipaa) offers a variety of resources to help people understand HIPAA. The rules are complex and -- like any rules -- can have unintended consequences. They were NOT meant to discourage doctor-family communication, but only to give patients some control over their medical information.
Doctors are well within their rights to encourage patients to give consent for sharing information with family members, and they need to explain why it's important. Collaboration is needed when families are deeply involved in their loved ones' care. Research has shown that when family members are involved, patients with serious mental illness stay better longer and have fewer relapses. The patient and therapist TOGETHER can specify what information can and cannot be shared.
Parents like "Frantic Mom in Philadelphia" become more anxious and depressed when they have no information on how to help their children, which creates additional family stress.
Parents who are financially supporting a child over the age of 21 may decide the conditions under which they will continue their support and pay for treatment. They may decide that one of those conditions is that they have some basic information from the patient and therapist about how they can help. I am NOT suggesting that the family should get access to their son's full records, but only that they should be given basic information on how to help and what to expect.
If an adult child objects to doctor-family communication, many families wrote to let me know that NAMI, the National Alliance on Mental Illness, offers a wealth of information and support for families and friends of people coping with the challenges of mental illness. NAMI's Web site is www.nami.org, and its toll-free helpline is (800) 950-6264.