We’ve all heard of a “living will.”  It’s that document that says you don’t want to be on a respirator.  When asked, some peoples’ immediate reaction is, “Oh, ya, that allows them to pull the plug on me.”

Yet, recent changes to the laws governing the privacy of your medical information may prevent your family or friends from making an informed decision for you.  In a prior column I discussed the Health Insurance Portability and Accountability Act of 1996, commonly known as “HIPPA.”

Although the law was passed in 1996, the regulations implementing the law did not come into effect until April of 2003.  And those regulations have many health care providers—hospitals, doctors—confused and hesitant to share any medical information with third-parties.

To a large extent, the fact that health care providers cannot share your medical information with others is a good thing.  I’d like to think my medical information was confidential.  For instance, I wouldn’t want a drug company calling me up at 8 p.m. telling me that they have some drug that will help me with that little problem I discussed with my doctor today.  I’d like to keep my little problem between my doctor and me.  (I actually don’t have a little problem; this is just a hypothetical.  No, really.  I don’t.)

But sometimes you would want your information shared with other people.  For instance, let’s say you are a well-organized person and you had a lawyer draft an “advanced health care directive” for you.  An advanced health care directive is a document that says how you would want to be treated if you were unable to make medical decisions for yourself (that is, a living will) and that appoints someone (called your “health care agent”) to make medical decisions for you, if you cannot (that is, a health care power of attorney).

Let’s further assume that you suffer a stroke and are comatose in a hospital.  Your health care agent comes to see you at the hospital.  Introduces himself to your doctor, and your doctor says, “What should we do?  We might have to place your father on a respirator.  Should we?”

Your agent has your advanced health care directive with him.  The directive says that you don’t want to be placed on a respirator, but your agent isn’t quite willing to give up on you.

So, your agent asks, “If we place my father on a respirator, is he going to stay like that or might he come off the respirator someday?”

“Good question,” says your doctor, “but I can’t share your father’s medical information with you because of this new federal law called HIPPA.”

Now this hypothetical may or may not happen in the real world.  I’d like to think that for such a grave decision, when a close family member presents a properly executed advanced directive, that a doctor would share as much information with the agent/family member as would be needed to make an informed decision.  But in the months following the enforcement of the HIPPA regulations, you can never be too sure of what information a health care provider will or will not disclose.

The best remedy is to draft specific language dealing with HIPPA and the disclosure of medical information into your advanced health care directive.  By properly crafting the wording of the document, you can ensure your agent’s access to information that is vital to his proper decision-making process.

The federal government may create specific exceptions in the law that will allow health care providers to share information with agents named in properly executed advanced directives, but I think it unwise to wait on government action.