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.
copyright Dia Osborn 2011
The Odd and Unmentionable 
A very valid concern. Among the many doctors that I’ve interviewed over the past few years, however, I have been reassured time and again that (1) doctors want to do the right thing for their patients, and (2) in almost every instance, the circumstances of a medical emergency are so varied and complex that doctors are in fact obligated to contact the healthcare agent or family or friends (assuming they can be identified and found) to get input because the exact situation at hand doesn’t fit neatly within the directives set forth in a patient’s living will (when it can be located). Also, studies show that approximately 95% of people that enter a hospital, even during a medical emergency, are lucid and competent when they go in, so the patient can usually tell the doctors not to do anything “drastic” without first talking to his/her healthcare agent. Great article!
Hey Scott…thanks so much for weighing in. I wondered what kind of insights you guys might have on this. I admit I was very surprised when I first read the article and thought that, surely, even if some doctors are confused about this, they must be in the minority. I have a friend who used to run an E.R. and we’ve had long conversations about the kinds of situations she faced as a doctor there. I know it’s true that the majority of people can still communicate even in an emergency situation, and I take some comfort in the 95% odds. I really do. But…I also have the kind of mind that tends to worry about long tail risks. I can’t help but wonder, what-oh-what happens if I turn out to be a member of the unlucky 5%? How do I protect myself then? Isn’t the whole purpose of an advance directive about planning to prevent catastrophe just in case the worst happens? A penny for your thoughts.
Hi Dia! You’re absolutely right to be worried about that 5% chance – we all should be. Here are some other scary statistics for you: studies show that only 20-24% of American adults have directives. Of that 20-24%, less than 2% have them available/accessible when needed (so less than one in 100), and even if those folks have their directives, in a majority of cases, they’re poor documents (meaning they’re incomplete, or they reflect poor decisions, or they’re unclear/ambiguous due to the inflexible way in which questions on state forms are presented) that provide little or no help to doctors and caregivers. Statistics outside the US, where the same healthcare system problems exist, are even worse! And we wonder why advance medical directives have been so ineffective in raising the quality of care outcomes for patients! 🙂 There is a really, really good report that was presented to Congress in 2008 (Judy Peres was one of the authors) that set out why advance directives have been so confusing, misused and ineffective since they were introduced in the 1980s. We used that report (and Judy’s guidance, among others) as a map for the creation of our system, i.e., we wanted to address all of those problems so that AMDs become useful tools for people everywhere. To answer your question above, I think the best way to protect yourself is to have your medical directives registered in a national/international electronic repository, and I believe that eventually, there will be only one repository for the United States/world (much the same way that there is more or less only one organ donation bank in the US, there are only three credit reporting agencies, and so on). Having state repositories doesn’t work, because once you travel outside your state, if something happens to you, doctors have no idea where to look. It has to be national/international. Hope this is helpful!