In my last post I mentioned a half-finished post about how Americans seem to think we are somehow special and should therefore be immortal. I deleted it last night, thinking that it just wasn't working in the context in which I was writing it, which was in regard to yesterday's article by Gina Kolata in the New York Times
about the difficulty in recruiting patients for oncology clinical trials
. So of course today there's another article, at Salon
, that treads on the same territory, which is how despite the spinning by Republicans of coverage for discussions of end-of-life care with one's doctor by the right as demanding that you die RIGHT NOW under their "All That Is Not Forbidden Must By Definition Be Mandatory" rule, and its corollary, "All That Is Not Mandatory Must By Definition Be Forbidden" ( See also: abortion under the first rule, and individual children praying in school under the second), an enlightened nation simply MUST recognize that people die.
It's odd that in this country that has entrenched in its power structures an evangelical Christian community which has constructed a belief system in which you can do whatever heinous deeds you want and still go to heaven after you die if you just believe a Jewish guy who said we should be nice to each other got nailed to a cross 2000 years ago to absolve you, is so loath to deal with death. The notion of heaven doesn't seem to stop them from making huge grandstanding gestures to keep the feeding tube in one Florida woman whose brain has long since turned to liquid and to insist that the mere mention of end-of-life care is somehow a mandate to die.
For sure, death is some scary shit. There's an old "Life in Hell" cartoon by Matt Groening in which Binky tries to reassure his son Bongo about death and in the final frame Bongo, unreassured, lies in the dark with his eyes wide open in terror. I've always remembered that cartoon because I was the kind of kid who would sit bolt upright in the middle of the night in a cold sweat of terror about death. This lasted well into adulthood, but the peculiar thing is that when you start to get older, and you can no longer reassure yourself that this reality is a long, long way away, this starts to dissipate a bit. I can't remember the last time I had an episode like this. I think perhaps as the world goes further and further into the toilet, the idea of not being around forever seems less terrifying -- unless you're an evangelical Christian politician who knows you're going to heaven, in which case you are scared to death.
Or maybe it's just the insurance industry money.
Remember how groundbreaking Six Feet Under
was, this idea of a show about a family's journey to life set against the backdrop of a funeral home? Remember what is arguably the best series end in history, as we watched the Fishers and friends live out their lives and then die (though why Keith had to be the victim of a shooting I still don't understand, although I was so sick of poor, doomed Nate and his flirtations with death
by Season Six that it was a relief when he left this mortal coil):
...thereby not only precluding the awful idea of a "Six Feet Under Movie", but also filling those of us who had invested six seasons into these characters with something akin to joy? In that series, death was a part of life, whereas today, Alan Ball has created a series about vampires, who get to live forever and have great sex. It's as if popular culture had this brief moment of sanity about death and then lost it.
I have no room to talk on this matter, because I don't yet have a living will. But it's hard to understand the resistance that Republicans have to even the mere discussion of what people's wishes are, or even to the idea that we ought to be thinking about that. I may be more likely right now to get wiped out on the Garden State Parkway than to die of natural causes these days, but at age 54, those odds start to even out after a while. And like it or not, the odds aren't very good that we're going to die in our sleep at the age of 90 after having great sex:
At the end of our long and increasingly longer lives, when we are terminally ill and in the last months of life, we must accept our bodies' decline, face our own mortality, gather our families and say goodbye. Say no to feeding tubes, ventilators, resuscitators, the isolation of ICU.
End-of-life care eats up 12 percent of U.S. healthcare dollars; next year, we'll spend $135 billion on it. That's not money spent getting well and extending life, that's money spent preventing and easing death in terminally ill patients. Indeed, 40 percent of Medicare dollars are spent in the last 30 days of life.
Where does the money go? Hospitals. Half of us die in hospitals, 20 percent of us in their ICU beds, which cost 10 times as much, on a daily basis, as hospice care. ICU costs $1,500 daily; on average, $10,900 the first day.
Don't blame hospitals or physicians. We check in, we ask to be saved. Doctors provide care; they're not supposed to cut off or limit care. Besides, they might get sued.
We are the problem. We are Harry and Louise, the fictional suburban couple who keep cropping up in TV ads, paid for by health industry groups. In 1994, they criticized government involvement in Clinton's healthcare plan, and now in 2009 they support government reform in Obama's plan. In each case, Harry and Louise embody and fan our fears about limiting care. They want it all, every choice, every procedure. They want doctors to "do everything possible." Harry and Louise must die.
How did we get into this mess? The 30 percent end-of-life spending rate hasn’t changed since the 1970s, when Medicare began tracking it. We’ve been dying poorly -- at great expense -- for decades.
We did this to ourselves. We moved death out of homes and into hospitals, and once there, left poor or no instructions.
Besides, accept death? We're Americans! We're hard-wired to live fully and richly. We certainly will not go gently into that good night. Every day we cheat death. We buy automobiles with airbags on all sides, wear helmets when we bike and face infants backward in car seats. Many of us feel most alive flirting with death: We jump out of airplanes, surf with sharks and ski off-piste. We expect to be rescued from an avalanche and miracles to happen in the E.R. How do we know? We've seen it on TV.
That we fear death is understandable. Among human experience it's the sole unknown. No matter where or how we live -- in cities or countrysides, extreme skiing or sunning by the pool -- death is the only part of life we can't know.
But when it comes to dying, we act the same: We call 911 and leave decisions to medical professionals. We do everything medically possible to prevent death. We get hooked up. Do we fend off death? Nope.
That there is gentle language in at least one of the the health care reform bills now winding their way through Congress that taps us on the shoulder and encourages us to have this discussion with our families and our doctors isn't a bad thing. But what's a constructive way to perhaps spare our families some agonizing decisions when compared against the exploitation of our natural fear of death to score cheap political points?
Labels: health care