Why is it that families are kept so far out of the loop when it comes to a loved one’s health?
The quick, easy answer, of course, is the nation’s health insurance portability and accountability act (HIPAA). Physicians are able to share only certain information with the family unless the patient agrees to more. The problem is that the patient might be too elderly, addicted or mentally ill to cooperate or even understand what they are agreeing to (or simply stubborn).
Certainly individual civil liberties must be taken into consideration. This writer, in fact, is more than moderately liberal.
But there is a blurry but significant line that puts human wisdom to the test, as we evaluate true need for family assistance.
Beyond HIPAA’s ramifications, there are doctors who frankly don’t care to communicate with anyone other than the patient, no matter who they are allowed to talk to. As well, many estranged families may not be interested in the health of their kin.
But for those families of the mentally ill, alcoholic or addicted who want to help their loved one, they need to be able to communicate with clinicians, doctors, and therapists. Rather than just informing the treatment team of a loved one’s behaviors at home and not receiving a treatment team response, the family must be brought into the fold of treatment teams. In the wake of the school shooting in Newtown, Conn. in December 2012, nothing less is required.
HIPAA needs to be reworked. There needs to be an out clause granted to family members who obviously 1) are intelligently trying to work on their own coping strategies in a troubled family dynamic; 2) care about their ill family member; and 3) can offer the most significant information about the patient because of a shared living situation or close interaction.
Lloyd Sederer, MD, medical director of the New York State Office of Mental Health and adjunct professor at Columbia University Mailman School of Public Health, wrote a few weeks after the Newtown tragedy of families being the true first responders of psychiatric illness. How very true. And yet how shabbily they have been treated.
Anyone who has been around the block with a relative suffering from mental illness or related concerns — even those empowered with the great help of the National Alliance on Mental Illness and other advocacy organizations — knows how hard it still is dealing with treatment providers.
Who, after all, knows a patient’s symptoms better than the family who lives with someone exhibiting psychosis, neurosis, manipulative behaviors, or obsessive-compulsive mannerisms? Who directly witnesses what the patient may cleverly hide in a therapeutic session?
Should not symptoms drive treatment more than diagnosis? Symptoms, after all, are what delineate an individual as being functional, or not, in various scenarios. And should not families be given information on how to respond in ways that may actually help the patient?
Though there are so many more, these alone are perhaps the two most critical, simple means of understanding that families must demand to be brought into the fold, respected as harbingers of the most significant information about mentally ill and addicted loved ones who are suffering, for the most part, needlessly.