The 'deather' movement got another public relations boost yesterday when Senator Chuck Grassley (R-IA) told constituents they "had a right to fear ... a government program that determines if you're going to pull the plug on grandma."
By now it's well-documented Sen. Grassley and other 'deathers' are using disinformation to inspire fear and rage in order to undermine health care reform. What has been less documented is how the 'deather' movement is poisoning the well of any discussion about end of life care.
More below the fold....
The Tangled Skein of End of Life Care
We often hear the phrase "a lot of noise out there" to describe a public sharply divided over an emotionally-charged issue. I'm not fond of that phrase, as I think it often mistakes the locus of the noise. Better to say "a lot of noise in here" - in our own minds - because usually the sharp divisions "out there" mirror different threads of tangled thoughts "in here," conflicting impulses with which most of us wrestle.
End of life care is one of those issues, one most of us have faced or will face at some point and with which few of us is ever really comfortable. Some of us might claim we're confident in an end of life decision right now, in the abstract, but when the actual situation presents itself that comfort usually evaporates, for everyone involved. What's more, most of us know any comfort-in-the-abstract will evaporate under the harsh glare of actual events. We've dealt with it first-hand, or helped someone else wrestle with it, or simply recognize the difficulties.
Many threads ...
This isn't an issue of manufactured complexity, except to the extent that modern medicine creates opportunities - and thus decisions - that did not exist a century ago. Rather it's an issue of inherent complexity, both individually and socially. Consider:
- A 2006 Mayo Clinic study found that almost 40% of lifetime medical expenses arise in the last six months of life. You could call it the "cost of dying," and modern medicine has made it possible for that cost to skyrocket.
- A 2008 Dartmouth Institute study found that higher spending for "heroic measures" does not often yield longer life or greater patient comfort. More often the procedures just make dying more expensive, thus giving health care providers a profit motive in performing and advocating such procedures.
- Conversely, the young and healthy have a profit motive in not "wasting" limited health care resources on those whose deaths are imminent. Most of us cringe at that idea, as well we should. Someday, more likely than not, we'll be the patients agonizing with family and others over how many more weeks or months we have left.
- The "cost of dying" metaphor has important exceptions: the child or adult who, after such care, has years of quality life ahead. While these exceptions are too often cited as if they were the most common outcome whenever a discussion of the "cost of dying" arises, the fact remains that some of us may and do recover when the "miracle" diagnosis and treatment are identified.
- There is a moral issue of whether and how we value each others' lives. Even that moral issue is not completely lucre-free; one element of it is the archaic but still subliminally-present notion that your life - specifically, your capacity to produce taxable wealth - is the king's property. (This is why the penalty for suicide was forfeiture of real and personal property; it was the king's compensation for "lost" taxes.) Most modern societies have shifted suicide to a tragedy against God/Nature/Family, retaining the idea that your life is not yours to end when you think it's no longer worth living.
- Finally there's the fear of death coupled with survivor guilt, leading to those dark moments when we think "if only" we'd done this or that, a loved one would still be here to share with us.
... All knotted.
It is impossible to disentangle these threads. Any argument based in one will meet objections based in another. Worse, because most of the threads do have economic elements, it's easy to dismiss any argument with which you disagree as being "all about the money."
And again, the noise isn't just "out there." For most of us, it's "in here." We can't disentangle the threads even within our own thoughts, especially when we're facing an actual case with ourselves or a loved one. Questioning our own thoughts and motives is or ought to be normal in such situations, and in one sense the high "cost of dying" reflects both hope and an impulse to authorize every possible measure that might diminish - or at least not magnify - the impending grief. Death is traumatic enough without having to wonder, or leaving our loved ones to wonder, if we or they "did all we could." When we consider "quality of life," should that not include the "quality of death" and whether we get a last chance to say "I love you?"
An apology offered, and demanded.
This has probably made some readers uncomfortable, and for that I apologize. For what it's worth, I share the discomfort; the topic is no more comfortable to write about than it is to read about.
And that's precisely why it's so outrageous for 'deathers' to grandstand on this issue. Their demagoguery on one of the most agonizing issues any of us can face, twisting that inescapably tangled noise "in here" into a political tool "out there," is morally abhorrent.
The end of life counseling provision in H.R. 3200 is not "a government program that determines if you're going to pull the plug on grandma." The provision tries to ensure that, when we have to twist our hearts and minds into knots trying to deal with the horrible realities of our or a loved one's possibly terminal illness ... we're not also having to wonder who will pay the doctor to lay out the medical facts, listen to our tearful pleas, offer whatever guidance is professionally and humanely appropriate, and help us find some small measure of comfort in whatever decisions we make.
Shame on you, Senator Grassley and all the rest who have turned one of life's most harrowing issues into a political scare tactic. Right now, across America, tens if not hundreds of thousands of people are asking themselves, their families, and their doctors "How much longer? How much more?" Your politically calculated lies about "pulling the plug on grandma" are not making those conversations easier. They're making those conversations even more painful.
As citizens, and as human beings, we deserve better from you.
At the very least, we deserve an apology.