We do. This is where the guidance to stop resuscitation after 15 minutes without a rhythm comes in. Unless you're a child who drowned in cold fresh water, of course, or an adult who apparently died of hypothermia. The problem is that there are so very many different sets of facts, and people are far more resilient than you can imagine. And in the heat of the moment, we tend to opt to fight rather than to let go. Which is actually OK, I think.

Well, yes, ECMO is probably a bad example, because it's by definition an acute therapy that can't be continued more than a few days, at least at the current state of the art. Even there it's a bit questionable in the case of chronic disease exacerbated by acute cardiopulmonary collapse from a (presumably) reversible cause. But other therapies, like the simple $10K/day ICU bed, are much harder to argue against, unless you've given specific instructions. It reminds me a little of the old instructions for tuning a carburetor - turn the screw until the engine dies, then back up half a turn. Most of the really futile ICU cases I've seen didn't START as futile cases, but they sure ended that way.

I'm not actually all that impressed with medicine in "most other Western countries" as a touchstone for our own. Every country has its own social norms and conventions, all of which fold over into health care. We tend to value privacy, autonomy, personal space, personal choice, and hope for recovery more than most, and it costs us a lot of money.

I think the problem is that we don't know in advance when the "last days of life" are for anyone. Or at least we don't know if prospectively, and knowing it after the fact is kind of pointless in terms of limiting costs.

If there are treatments that are virtually never helpful, we need to stop using them. There aren't many interventions that actually fit that description, though, and even the most invasive of them - ECMO, for example (basically continuous heart-lung bypass) - have their place in restoring people to health in the right circumstances. Eventually the circumstances are such that death is inevitable, but recognizing that point is not something we know how to do with certainty. Even when we're pretty sure, communicating our own conviction is very hard. And where there is no certainty, there is the great likelihood of erring on the side of treatment.

Hospice care, which tends to be very inexpensive compared to attempts at cure, is helping because it gives people a viable alternative path. Most physicians with whom I deal (a very large number, as it turns out) are big fans of hospice care. Not because it's cheap, but because it helps make the case for avoiding further torture. It's not a bad way to reduce costs, though, and that's not irrelevant.

I'm a board-certified physician (among other things). There is no way that I would allow my colleagues to inflict the kind of death on me that they are forced to inflict on so many. Part of this is certainly that I know full well that we all exit this mortal coil toes-up, and there's no getting around it. Part of this is the personal reluctance to experience the diminished autonomy, indignity, pain,and hopelessness that comes with fanatically-treated terminal illness.

But a big part of it, I think, is just that I know that there are so, so many things that are worse than simply dying. Dying in agony, for one. Dying after having bankrupted my wife or my children. Dying after being reduced to a stinking thing in a bed long enough that only those who loved me most even want to be near me, and that only because they feel they must. Physicians see these things all the time, and we see the road that leads to them. We're not (that) stupid, and we would rather exit early on that road, not at its terminus.

As long as I have the capacity for joy I will strive to remain alive to experience that joy. When the capacity - or the joy - is gone for good, I have given quite strict instructions not only to my family but to some other clear-headed and insistent people who will do their best to ensure that I too will be gone without further "heroic" intervention.

The only problem that I have with the article is that it pretends that everyone should make the same decisions. Everyone has their own decisions to make, and without my knowledge and experience I might not make the same ones. I think as physicians we owe it to the people for whom we care to educate as well as we can and help them to understand why we might personally decide one way or another. But I will never tell them how they "ought" to decide - it's really their choice. Taking that choice away from a person leads too easily to very real outcomes that are much nastier than simply a life that ends later than it ought.

Ha ha!

I remember discovering Slashdot in '97 or '98, at my first job out of college, a dot-com job. What a crazy time. How can it have been so long? Twenty years since my first concert - the first Lollapalooza, more than ten years since Fight Club came out, Steve Jobs resigning - but I still have two shares of Apple I bought back then at $32. I still remember the Slashdot blue-green (same as it is today, but without the gradient ;) ) and how every post, and every comment (above 3 or so) was SO smart and thought-provoking. It blew my mind. I've read Slashdot both more and less over the years... but I'm still reading. It'll be a little strange not seeing the CmdrTaco handle anymore, but life goes on. Best wishes, Rob. Anyways I have added you on my newfangled Google Plus. :)

Some people do spend 14 years in grad school, though!

Not that I was all that fond of Sony anyway. Trying to rootkit my machine from a CD a few years ago didn't impress me, and the prices they charge have always been a little silly. With this action, Sony has now officially asked their lawyers to burn down decades of customer relationships. "Sony" and "Don't buy this" are now synonymous.

As far as two years of IP logs, good luck with getting anything useful out of that one. Then again, that wasn't the point. It was just another intimidation tactic to keep people from spreading the private keys. A little late, I think.

The article is pretty good, actually, in that it doesn't try very hard to claim that they're curing the world of its ills. There's a little in there, but mostly it deals with Fragile X.

Randi Hagerman (the researcher quoted extensively in the article) is one of the leading lights in Fragile X research. She and her husband, Paul, described the gene, developed the RFLP that we now use to diagnose the illness, and did much of the fundamental work to explain the genetic-expression behavior of the gene. It is not a simple inheritance model, and the expression of the gene is quite confusing. She's a superstar.

As far as the broader issue of autism (and even more confusingly, autism spectrum), Fragile X has always seemed to me to be a blind alley. People with Fragile X (I've worked in that community as a physician) have a very specific affect and behavior pattern that doesn't look a lot like the behavior of people with autism (a community I know all too well as a physician and a parent of an autistic young man). Most of the early research in autism was tainted by the inclusion of Fragile X patients, and most of the combined research is just confusing.

I hope that the drug proves useful in Fragile X, although pharmacotherapy for these kinds of disorders has frustrated us over and over again. These are simply very hard diseases to affect very much. At the least, though, it'll be another step toward understanding a serious disease. And I'll continue to wait and watch for anything that will help in autism, but I REALLY don't expect much from this specific drug.