Friday, June 12, 2015

In memoriam

My father passed away last night, at the over-ripe old age of 99.92 years.  He was just another guy, not a celebrity, though he might wistfully have wished otherwise.  He wondered near the end if he'd led a good enough life, remembering that doing things for others was how his college, Antioch College, at the time of its glory days, defined a good life. He had been a news reporter, career civil servant, a folk artist making enamels and origami, and a writer of doggerel.  Lots of doggerel!

As his various systems began falling apart, literally from head to toe, Dad several times told me he had had enough, though he couldn't (or wouldn't, he wasn't clear) take his own life.  He just wanted his misery to be over with.  At his age and in his condition, he hardly had the means even if in his terrorized panics he might wish to end it all.  Over many weeks, he faded in and out of partial awareness of people, surroundings, memories, just as his physical abilities and his physiology were also heading down the road to Nowhere.

Our Pincushion Finales
For a while, my father was largely trapped in a Sartre-like Hell, not by being confined forever with unsavory people, but with the abstract techno world of modern biomedicine.  Its obsession with plumbing and its failure, despite the very best of intentions, to be just plain decent to others and to ourselves when it runs out of pins to insert almost everywhere, and causes huge distress.  This, even if the reason is that it can keep us going in one gear or another for a long time, as our various systems experience their accelerated decline.  The most visible current commenter on this state of affairs from inside the medical system is Atul Gawande, whose work is very much worth reading--and his suggestions on making the most meaningful kind of end of life worth heeding.

As he was (the person, not the horse)
The obstructionist troglodytes who impede assisted suicide measures are in part responsible for the nation's increasing Agony of the Aged, a tragedy that makes the Greeks' tragedies seem farce by comparison.  Our relentless spending on huge projects designed to prevent or cure disease is only going to exacerbate things.  One can't denigrate the desire to prevent or at least cure serious diseases, but one can critique the lack of more comprehensive thought about the problem of life as a finite proposition.  Rather than intensely and with laser-like focus on finding treatment or even real cures for early onset, life-devastating diseases, our widely publicized stress on 'precision' medicine is going to leave ever more people in miserably decrepit states for increasing numbers of years. Pinpointing cause, genetic or otherwise, leads to pincushion outcomes and distracts from the real 'point', which should be the overall quality of life.

The problem is real and getting worse.  We are setting many or most of us up for ending up as medical pincushions.  We simply do not have a humane policy about aging and disease, because not only are the issues challenging, technically as well as philosophically, but they are too deeply interleaved with material interests.

"Affordable care"
My father, though not really wealthy, had a good or even de luxe health care plan--as a civil servant he had what many Congressmen have but cruelly deny to the rest of society, and those without it often suffer a fate one can hardly bear to think about.  But in Dad's case money was not a barrier, and in the end it became clear that he was not going to get any better, suffer less discomfort, or experience less terror in a hospital.  So the rest of his family were able to arrange for hospice care.

We can all be thankful, very thankful, for the hospice movement.  What they do seems incredibly honorable.  We were lucky, if one can use that ironic term in a non-cynical way, because my father was eventually moved out of the ER, out of the hospital pincushion ward, and into a hospice-care section of the retirement complex where he had lived for the past 20 years.  Being 'downstairs' wasn't the same as being in the recognizable--even to one in and out of partial confusion--comforting environs of his apartment, but at least he had calm, knowledgeable, and supportive care, that enabled him to fade away, in relative peace.  My sister and step-mother were at his side during these last weeks, though he often didn't recognize even them.

Even then, he was handed from one regime of medical responsibility to another, assessment and palliative measures weren't uniformly or rapidly applied, one nursing or medical hand didn't entirely know what the other was doing.  All were helpful and conscientious, but these are daunting circumstances.  The net result: a distraught person helplessly wanting it to be over with.  Here is a poignant recounting by our daughter, his granddaughter, of her visit to him, fortunately long enough before the very end.

At least he had skilled nursing care and some intervention by the hospice team.  Even so, in his last days, wraith-like and hardly able to move or respond, he had some flailing, sleep-interrupting terrors, that for some reason even under hospice care were not prevented.

How many are even as lucky as he was?  How many end their lives multiply intubated and pinned like a collector's butterfly, largely left alone in a rush-rush, impersonal hospital room?  How many have little or perhaps even none of my father's level of care? How many doctors know or care enough, or are free enough from fearing judgment or lawsuits, to ease their patients' way out?  How many of our many elderly contemporaries even have access to any semblance of hospice care when it becomes clear that 'medicine' can no longer help?

It requires no cynicism about our medical system to recognize that we face a huge dilemma, about which we've recently posted.  Even those with faith in an afterlife seem to cling to this worldly one. Most of us would not give up on medical treatment, or research, where it can really do good; and no one would want to just write off those suffering even from avoidable diseases related to lazy or indulgent lifestyles.  Even when lifestyle choices are largely responsible, we wouldn't want to stop considering genetic or other causes of vulnerability. We don't want to ignore antibiotic resistance, because infectious diseases take even those for whom it is not a favor to ease them out of misery.

But the inevitable hard fact is that the more our success in such preventive or therapeutic work, the more we condemn ourselves to deteriorating in our every bodily system and, in the absence of a better way, being degraded, more like objects than subjects, in our final experiences.

The more we live well into senior years, the more this will be our dragged-out fate, and those who for various reasons both sincere and self-interested promise otherwise are committing culpable acts of thoughtless or indirect cruelty.  There is no obvious solution but there is an obvious issue and it has or should have major policy implications. This is a real moral conundrum, our society hasn't really yet faced, except here and there, and subordinated to the enamored rush of 'science'.

RIP, Dad
Well, for my Dad this is now moot. He has found peace, as the euphemism goes.  In this age of self-declared 'precision', I guess he can claim to have lived to be 100; after all, rounding up 99.92 is far less a violation of 'precision' that what we're being promised!  And in that spirit, at least he should have the final word, or as he might put it, the last laugh, typical of his humor rather than anything morbid.  Here is a verse he published in his book Now I am Ninety....But It's Not My Fault:

Now I am Ninety
I am ninety.  It’s not my fault.
I got there from zero.
People just fed me—
My mom and my pop.
Oats they threw in,
Fish and fowl and brisket,
And even fruit they threw in
And spinach—ugh—and
Turnips—ugh—they threw in.
And rhubarb—ugh!

I am ninety.  It’s not my fault.
School marms and men taught me
ABC’s and threw in 6 times 7,
English and higher math too.
Calculus—ugh—and differential
Equations they threw in—ugh—
Twisting my brain in knots.
Dates they taught me—1776 and 1812.
And Caesar and et tu Brute
They taught me.  My head gorged with stuff.
Surely it was not my fault.

I am ninety.  I am not to blame.
They sent me to war.
They taught me to shoot—ugh—
Sent  me on forced marches—ugh—
Taught me to swim in oil-slick water,
And identify strange planes in the sky,
And fight fires on aircraft carriers.
I came home as others did not.
It is not my fault
That I am here at ninety.

On my own, I think, came love
And coupling and kids
And diapers—ugh—
And  careers and dear ones died—sigh—
And  it was not my fault.
DNA, perhaps, and more love
And twenty odd-shaped pills—ugh—
And I am here at 90,
And as I have said,
Through no fault of my own,

I am here.


Holly Dunsworth said...

I love this human just from reading his poem. Thank you for sharing this bit of your dad with us. Peace and love to you and yours, Ken, Anne, Ellen, and ...

Anonymous said...

That is a beautiful poem describing journey through an incredible century. My kids will have to write such poems in early 2100s, if they live that long and I wonder how their century is going to be.

Rest in peace !


Anonymous said...

He was a unique character, that's for sure. Thanks for the thoughtful post.


Ken Weiss said...

Here is a comment sent to us via email because the author had trouble posting it himself, and posted with his permission:

That was a touching and insightful story you wrote about the death of your father, one that left me feeling I knew him (a little) and liking him a lot.

I also read your daughter's incredibly moving essay on her last hours with him. This act of sitting with him, listening, talking, just being there was a profound reminder of the value of human contact, no matter the circumstances.

I want to thank you for writing about him and for sharing him with us.

My thoughts are with you...all of you.

Ed Hessler

Hollis said...

Great essay, thanks! We Boomers talk about these issues a lot. Let's keep talking ... maybe things will improve.

Ken Weiss said...

Thanks to all who have or will express their condolences, as a Comment or on the Tweet that Anne made of this post. If people can mobilize to address the subject, not just for ourselves but for those younger, it will be a fine national service.

We'll be further exploring the implications of competing causes in regard to end of life quality implications, next week after we do a series on the question of inheritance of gene regulation patterns.

But if the implications of medical science, health care and so on are to be addressed, it will take organized action on behalf of those not yet caught in the system.

James Goetz said...

Dear Ken and Anne, My deepest sympathy to you and all of your father's family and friends. Peace, Jim