electronic medical records | The Odd and Unmentionable

Huh oh. Here’s an FYI post.

I was just reading an article titled Handful of states promise physicians online access to advance directives in Amednews.com, an online news source published by the American Medical Association, when I came across the following disturbing passage:

“By connecting the advance directive to an information exchange, a physician could access it without having to contact family or caregivers, or find out a patient’s login and password to current online registry programs. That connection would allow a physician to follow through on the patient’s wishes without any obligation to contact anyone.” (emphasis mine.)

Without any obligation to contact anyone? HUH-OH. Did the American Medical Association just toss out our right to a medical power of attorney? Are there any doctors out there really thinking that online registries will allow them to sidestep our medical proxies, families, and loved ones? Or is this just a misunderstanding on the part of the journalist that wrote the article?

For those who don’t understand the question, here’s a little background: There’s been a strong push by the government to make all of our medical records electronic. (It started with Bush and received funding under Obama.) The current goal is to have 100% of the nation’s records electronic by 2014. (Not likely to happen that fast.) Part of this massive effort involves establishing Health Information Exchanges, or HIE’s, at the state level, and states have already received a considerable amount of money to start setting these things up.

Enter: Advance directives that are registered online.

One of the goals for electronic medical records is to also have our advance directives available online. States with A.D. registries are already working to connect them to the HIEs they’re setting up, and at least one private online registry, The U.S. Living Will Registry, is planning to coordinate with the HIEs. That’s what the article is referring to when it says “By connecting the advance directive to an information exchange, a physician could access it without having to contact family or caregivers, or find out a patient’s login and password to current online registry programs.”

I’d be more inclined to dismiss this whole thing as a simple error if it wasn’t published in a news source published by the American Medical Association itself. Could this kind of confusion exist to some extent within the medical community? If there’s any possibility that it does then my natural inclination is towards exercising caution while some of the kinks are getting worked out of the developing electronic system and its use.

I looked around and found one possible solution. (Other than blind trust…which is not my forte.) It turns out that, where online registries are concerned, the U.S. Living Will Registry also has an option for a Document Locator Form as an alternative to downloading the actual documents to their website. The Document Locator Form directs a doctor or hospital seeking my advance directive to contact the people who know where it is and what it says, (i.e. my medical proxy and/or family) rather than giving them access to the documents themselves. This creates an unfortunate hurdle for doctors trying to access my wishes, but it also provides a layer of protection during a chaotic transition to effective electronic exchanges.

My biggest fear with this is that a well-intentioned but ill-informed doctor might pull the plug on me before my family had a chance to reach my side and say their good-byes. (While traveling for instance.) I, personally, don’t mind hanging around a bit longer…however uncomfortable or undignified it might feel…if it gives the people I love the opportunity for that gift of closure. I know the difference it would make for them during grieving would be profound.