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On some level, all our services, all the resources and functions of our society, are optional.  Many we've had for so long we simply accept them, others are contentious points of debate, others are pie in the sky dreams for some, and dread nightmare for others.

  None the less, everything is to some degree, a choice.  A police force is not mandatory, nor is the fire department, nor the armed forces... each of these at one point or another, was created to solve a problem.  

 People often differed on what problem they were solving, but they agreed on the solve.  For example, does the law exist to safeguard liberties, or mandate compliance with accepted norms?  Do we build prisons to punish or to reform, or just to separate the dangerous people from the regular folk, or maybe some combination of the three?

  Even after a solve is chosen, it's scope can change - should the police protect everyone, or just taxpayers?  Should illegal immigrants be protected by the laws of the land, or is their presence here a more terrible crime than whatever was done to them?  If you can't pay the fees for the fire department, should they save your house anyway?

  Then there's healthcare.

  With all the stories about healthcare going around, I'd like to share one I know personally; that of my father.  Even now, he's in a rest home, in so many ways slowly dying, as his wife is slowly dying from trying to care for him, to get him the best care she can in a broken system.

  For everyone who cheers the idea of letting those who cannot pay go untreated, I offer this story.

  My father is a veteran who served in the Korean War - he was a radar technician, one of such incredible skill that he'd achieved the highest possible rating in his trade before setting a foot in theatre, before working on a single radar-box in the field.  Like many his age, he joined up with visions of fighting the spread of communism, enlisting at 17 out of love for country only slightly more than a desire to leave behind a Dickensian home-life.  Our relationship has always been strained, but I am first to admit my childhood was a walk in the park next to his.  Kidnapped by his alcoholic mother before he was out of diapers, often times abandoned for days while she went out drinking, left with no food except what he could scrounge, or in once instance a single potato, something his mother for some reason thought he could prepare and eat at less than a year old.

  This childhood gave way to memories of keeping quiet when the landlord came around for the rent, or similarly hiding when his mother brought home a new man for a night, lest he be punished for 'interrupting.'

  Eventually his father found him and brought him home - to a life with a step mother who 60 years on would still call him worthless in front of his wife, and insist he could never do anything right.

  In this light, the insanity of Korea might've been a blessing, had he been able to lose himself in the battle.

  The paradox of the war for my father was  - possessing the highest ranking in his field - the more dangerous the war, the safer he was.  Every time the enemy came within 90 miles, MPs would wake him up, and transport him to a base farther away from the front.  In this, he came to watch the horrors of Korea, while remaining as close to sane as a person in such a place can be.

  When I asked about the war, Dad described it as not unlike working for an airline, except instead of shipping passengers and luggage they were sending out bombs, and every successful flight meant people died.  Pilots would first be horrified at the things they saw, and weeks later come back with tales of strafing civilians with guns blazing just to see how fast they'd run.

  The stories he returned with are filled equally with wisdom, terror, and humor, with the absurd playing as much a role as the insightful.  I could spend a year trying to write his stories down, and never do them justice.

  For purposes of this recap,let's skip ahead to years later, at MIT.  After his service was up my father returned to the states and decided to attend college.  Having placed second to last in his graduating class he didn't quite know what to expect, but MIT - for reasons known only to fate - told him he couldn't look at a course catalog without applying, and the admissions officer felt the better measure of a veteran was not his grades (which they refused to even look at) but rather his test scores, which dad excelled at.  Thus, MIT.

  After a few of what would probably be the best years of his life, dad walked by a lab which was full of champagne and cheers.  Curious as to what was going on (and likely how to get a free glass of champagne, though he's never entirely admitted this), dad asked what the celebration was about, and was promptly told they'd all been involved in researching a weapon system of some kind, and the yields were off the chart - far and away better than they'd promised, better even than anyone had hoped.

  Silently, he walked out - bothered, but unable to put it into words, lost in a thought, unable to fully put it into words, or even really grasp what the thought was. 
  For days he walked around this way - missing classes, ultimately failing every class that semester, lost in a thought he didn't fully grasp, but knowing there was something he must understand.

  A while later, he found his answer.

  Walking through a parking lot, he took a step, and felt something akin to a bolt of lightning on the back of his neck as the words finally came to him:

  "they're celebrating a better way to kill people."

  And then another step, and in another flash, the realization that he either had to understand this, to understand it and find some way to stop it, some way to resolve such a gross misalignment of value, or he'd go utterly insane.

  With that, dad spent the lions share of the rest of his life, trying to understand what makes such a thing happen, and how it might be prevented.

  The people my father studied with are legends unto themselves - Hartshorne and Hartman among them -  and the things he's learned, the things he writes about, are mind bending. I've had conversations with my father that taught me more about myself and the world around me than I could learn in a month of meditation.  I've seen the reactions when people understand what he has to say, and I'm left with the marvel that all of this doesn't hold a candle to what he's been trying to achieve.

  To listen to my father, what makes our modern world isn't our sciences, but strictly speaking that we have a language to write them in; namely, the calculus.  When Newton (or Leibniz) invented the calculus, and the many additions others would come later, every step was giving rise to a new way of writing about our world, not in the language of people but in mathematics; writing about the world in it's own language.

  If you want to communicate and preserve the truth of an observation, you can't really do better than that.

   Unfortunately, we don't have such a tool for communicating about people, either individually or as a group. 

 Language is imprecise, and numbers inappropriate.  You might assign a monetary value this way, but what something actually means to a person, that's an altogether different experience. Talk about something outside the realm of money entirely - how you value your wife, your child, your life's work - and numbers become even more absurd; watch a man fumble for the words in his heart, and you see the impracticality of natural language.

  This, is ultimately, what my father wanted to create; this, for lack of a better term, is his life's work - a language for expressing value, and ultimately, start work on it’s science.

  Speak with him today, and he'll tell you it still is.

  From a nursing home; where he's bedridden.

  This is still what he talks about with clarity; sometimes, it's all he talks about with clarity.  

  Sometimes, on the bad days, not even that.

  The man cannot tell you where he hurts; he cannot communicate what he needs, and some days he can't stand on his own; but if you can get him talking value theory, or the organizing principles of living systems, he gets tired quickly, but he can still talk about them.

  If he had more money, he'd have better care; but he spent his life chasing meaning, not money.  Along the way he worked in industry as a programmer and an author, worked for IBM and DEC, worked as a part of the team that built the PDP-6.

  If we view this as a choice, then my father looked at the one road of a life in industry and a comfortable retirement, or a life trying trying to understand the human condition, trying to write the language that would advance our understanding of ourselves.

   I understand this was a choice, and I understand there are people who say you must accept the choices you make.

  What I don't understand is why we view the one 'good' because it gives you money, over the other 'bad' choice, because it doesn't, but potentially betters the world.

  For years, I've watched my father and his wife (realistically, the work was done by his wife) attempt to navigate the V.A. healthcare system, the regular healthcare system, medicare, medicaid, work with public hospitals, rest homes, recovery facilities, therapists, home care providers, and every other moving cog in the public healthcare system.  Along the way, I've listened to trials and tribulations, I've attempted to get him better care, and watched as a nurse insisted a clearly malfunctioning O2 concentrator was working fine because 'it was turned on', and wasn't labeled 'broken'.

  Sadly, we can see the nurses and staff aren't to blame; they're simply overworked.  Don't get me wrong, there are bad apples in every profession, but even the good ones are overworked beyond reason, following policies designed to save money rather than people.

  Save money rather than people - that, in a phrase, is modern, public, healthcare. 

  At one facility, the management company won't pay for diaper wipes (too costly), so protocol says use terrycloth towels, and wash them frequently. 

  Another won't pay for telemetry or monitoring (actually, this is most of them) so the patient is woken up every hour / two hours so they can take vitals.

  Another has crazy expensive equipment built into the walls because someone was talked into buying it, but the management company for them won't spring for the consultants to make it work, so it just sits there.

  In one facility, my dad had been in active care for too long, so they had to check him out and start his transfer to another facility, just so the ambulance crew could say he was having trouble and check him back in.  I swear to you I am not making this up - they checked him out so they could check him back in, because if they didn't, he'd be on the books for too long, and the bills would stop getting paid.

  Another facility wanted to test him for clots, but only test certain parts of the body because 'that's all medicare will pay for.'  When my father asked the doctors why they wouldn't check anywhere else he was told - without irony - 'well, that's what medicare will pay for, so that's where we'll find them.'

  Another facility ejected my father because he and his wife wanted to be consulted on treatment, and the staff refused. 

  Lest anyone think this is a 'dump on healthcare' moment, I assure you it's not.  What do all of these things have in common?

  Money.  Profit.  The bottom line.

  Even as my father gets worse, and his wife cracks under the strain, someone out there is making money on this process, and I am supposed to accept that in this country, that makes it all okay.

  Somewhere along the line, we all decided (and much in the way 'we all' decide anything, this was not to the betterment of people, but rather profits) that healthcare must make money, so now it makes money.

  I could rail about how my father is a veteran, but I'd rather keep it simple: he's a human being.

  He's a human being and he's my father, and he's dying.  Too much more of this, and he'll take his wife with him, because she has to watch it happen, and know she's powerless to stop it.

  All because they don't have money.  Because according to the market, his work doesn't have any value.

  As some reading this may know, I do have money - I mean, I have obligations, but I have a better job than most, and if you saw how quickly my salary is exhausted in the face of modern healthcare, you'd either laugh or cry (I did some of the former, a touch of the latter).

  This isn't about me though - this is about my father, and his worth as a human being; so let's talk about that.

  If I might get up on my soapbox for a moment -  the value of my father's work will never be measured in the values espoused by the market, nor should it be.  The act of valuing a thing - be it a piece of writing, or a philosophy, or a math theorem - in terms of money limits the valuation of human contribution to mere materialism.  Charles Pierce (pronounced "purse" incidentally) wrote back in the EIGHTEEN HUNDREDS that the trending towards materialism in philosophy was disheartening, and posed a risk for humanity, and I can't help but agree with him.  We are today presented with the paradox that we must establish the value of a person or place or thing in terms of the market, else we say 'let them die.'  Yet, anyone who can actually do this would rightly be branded a sociopath - any man or woman who had the option to do otherwise yet let a spouse or child die because they didn’t have the money to pay for treatment would be excoriated as inhuman, even as we turn around and demand they do exactly that, claiming it's their responsibility to only take on the debt they can pay, and they should've thought of that before making the choices they made.

“I don’t care, just please God let them live.”  This is what human beings say when presented with options; demanding otherwise is cruel.

  My father chose the work he did, he chose the life he lead, and now he's suffering for them, and I don't understand why discouraging people from tilting at windmills and building the better world is a good thing.

  I don't have a magic bullet cure here, I don't have a solution, and I can't explain how a single change can make it all better.  But healthcare is just like any other system; it was built and configured to solve a problem.

  And like most of our modern systems, it's failing miserably to remedy the root cause it was built to address.

  Lest anyone misunderstand, when you say a system must make money, then you've made a system for making money.  It doesn't matter what you call it, what your intent, your beliefs, your goals, your hopes or your dreams, make the first priority of anything 'being profitable', and you've made a 'be profitable' system.  Whatever else it's there to do is now secondary, and therefore negotiable.

  We've so lost track of this - that if there needs be profit it should arise as a side effect of a properly running system - that it's almost crazy talk, but it's true.  You don't design a healthcare system to be profitable, you design it to deliver healthcare.  I can say that we've done this because we've grown complacent, I can say we've done this because we've forgotten how to be giants.  I can say we've done this because we don't question anymore.  I don't know if one or any of these are true.

  What I know is my healthcare story is that my father is dying; he is dying neglected and in pain, and someone is making money, is turning a most terrible profit on his substandard care.

  To me, that is not okay.

Originally posted to jmkiru on Tue Apr 10, 2012 at 05:09 PM PDT.

Also republished by CareGiving Kos, March4Healthcare, Personal Storytellers, and Community Spotlight.

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