You’re Not Dying ‘Til We Say You Are

In the last post I mentioned how our society tends to quarantine the dying in unconscious and insidious ways, thereby making them harder to see and harder to reach.  Since then I’ve been thinking about one method  of quarantine in particular that’s surprisingly effective.  It involves who gets to declare whether a person is really dying or not and has evolved out of our current medical paradigm.

In The Hour of our Death, Phillippe Aries, a twentieth century French historian, says that prior to our modern medical age the first person who knew that dying was an imminent event was usually the person who was doing it.  Not so today.  When was the last time you heard anyone announcing that they were dying without a battery of medical tests and a doctor’s validation?

This is because, in today’s world, doctors are the guardians of the portal.  Only they are allowed to officially declare that someone is dying and even then, only after administering exhaustive tests followed by exhaustive treatment regimes that fail to work.  (That’s the scientific methodology for figuring out if we’re dying or not by the way.  If nothing works, then we are.)  This simple mechanism of controlling the diagnosis serves to make the majority of dying people invisible by removing their authority to 1) know that they’re dying in the first place and 2) even if they do realize it, communicate it in a way that anyone else will believe.

It’s really quite brilliant.

This current stage of development springs from our modern desire for tests, certifications, and proof.  If a dying person can’t provide us with these things then we tend not to believe them.  After all, how could they possibly know if they’re dying or not?  They’re not a doctor.  (Unless they are, in which case we’re a little more likely to believe them.  But even then we’re going to need to see the scans.)

Now, there are a number of reasons why this creates a problem.  On the personal level:

1)  It denies our sovereignty over our own body, and

2)  If we know we’re dying and no one believes us, it makes us feel invisible and crazy.

And on a strategic, fiscal level,

3)  It makes a dying diagnosis the most expensive diagnosis that money can buy,

4)  Most doctors are loathe to tell someone they’re dying, so many either postpone doing it until it’s too late for the information to be of any real use, or they never do it at all, which

5)  Is a huge problem because insurance and Medicare won’t pay for hospice care without a doctor’s referral.

But all that being said, there’s still another reason which is the primary one I wanted to explore here:

6) This mechanism of control takes our primal need to deny death and institutionalizes it into the very system that oversees the dying.

Needless to say, this gives our powers of denial quite a boost.  It sets up a bewildering array of hoops to jump through and there’s nothing denial loves more than hoops, because the more complicated it is to face something, the longer we can put it off.

So it’s no longer just anybody who can announce it’s my time anymore.  Only doctors can.  But even then, it’s not just any doctor.  It usually requires a specialist, maybe two or three of them.  But even a specialist can’t pronounce until they’ve done all the tests.  Blood tests, panels, x-rays, scans, ‘oscopys, surgeries, and more.  And they have to administer all the treatments, too.  Then the treatments to treat the side effects of the treatments.  Then the experimental treatments.  And of course all this costs a fortune which sets up hoops of insurance and loans and savings being depleted and assets being used up first.

(Which, come to think of it, is the other way of figuring out whether we’re actually dying or not.  If we run out of money and can’t pay for any more treatments, then we are.  So in some cases, insurance administrators are actually the guardians of the portal.)

It’s odd to me, how in some ways we’ve come to equate dying with treatments.  Are there still treatments left?  Then we’re not dying yet.  No treatments left?  Then we are.  But this is all wrong.  Treatments have nothing to do with dying.  Dying happens independently.  When we’re dying, we’re just dying.  There may be zillions of treatments left still to try but none of them are going to work.  Why?  Because we’re dying. In this case going through all the treatments first is primarily about satisfying the mind: our mind, the minds of our loved ones, the doctor’s mind.  It’s our modern way of answering the question:  Is it my time? If all the treatments fail then the answer is yes.

In any case, what all this hoop-jumping does is enable us to postpone the acknowledgment that yes, I am now finally, definitely, incontrovertibly dying for as long as humanly possible, sometimes far beyond anything that could be considered rationally productive.  In fact, sometimes it can even postpone the diagnosis until after we’ve become terminally unconscious, at which point we never have to face it at all.  And it offers another benefit as well.  It also allows the rest of us to avoid facing our fears about death.  Because as long as we can believe that someone isn’t dying then, in our mind at least, they’re not.  Even if they are.  Poof!  Dying has disappeared and we don’t have to fear it for a little while longer.

But there’s a cost to this denial and it’s a price that every one of us will eventually pay.  As each of us enters our dying time, this kind of institutionally backed denial automatically places us in a kind of perceptual quarantine.

Our society doesn’t want to hear that we’re dying.  They don’t want to know.  Even after the point is reached where we who are dying are ready to accept it, ready to commence the end-of-life tasks required for wrapping things up and saying good-bye, the society around us will still only want to hear the stories about cures.   And because we can’t deliver that story we’ll be marginalized, shrouded, and ignored.  Our laws and social policies will funnel most of the resources to those who are still willing to fight to live, and we and our loved ones will have a far more limited amount of help, if any, available to us.

I’m going to close this post with a quote from an article in the Literature, Arts, and Medicine Database:

In today’s world we encounter “invisible death,” a somewhat paradoxical name because its invisibility allows the savage beast free rein. Death is no longer “tame” because we deny its existence so effectively we no longer develop personal and communal resources to give it meaning. Death’s invisibility enhances its terror; our culture’s loss of spirituality enhances death’s meaninglessness.

copyright 2010 Dia Osborn

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