Monday, September 22, 2014

This Is My Stop and I Want to Get Off

Some things you see, you don't forget.  Those are often the things you can't really say anything about, either, because your thoughts don't agree with tradition or with just the way things are done.

What I saw was while we were installing some routine added telephone and computer lines at Frey Village in Middletown, PA -- a nursing home.  And still I can't, or won't, bring myself to describe the people we passed by slumping in their wheelchairs in a hallway, in their rooms, or in a social area with others but still as alone as possible.  In a hospital, professionals are buzzing around, there is important-looking equipment flashing numbers and beeping, so despite what you see, you can think there's going to be some things fixed for some of the patients, if not, surely, for all.  There could be no hope for any of these ancients in the nursing home; it was as harrowing as a war scene.

A recent report from the Institute of Medicine made the news last week, and it stated bluntly that aggressive care prolongs dying without improving the quality of life.  Exactly what I've been thinking; even for those I saw so many years ago, who were completely out of it, the standard is to intervene relentlessly to keep them alive; trips made by ambulance from home to doctors' offices and hospitals and back, over and over.  While my father underwent this for nine months, from hospital to rehab to nursing home, the word that came to mind over and over was:  torture.

When a bipartisan group from the House and Senate proposed (in 2009) that patients could be counseled by their doctors about end-of-life care and be paid for their time through insurance or Medicare, the right wing noise machine blew up and hit the headlines with the "death panels" scare before the public even knew about that provision in the bill that was being considered.  The real reason for that dishonest outrage, other than predictable opposition to anything helpful to the helpless, was that no part of the healthcare profit machine should ever be contained, no matter how useless or unreasonable.  Since the largest part of Medicare is spent on the last few years of patients' lives, the prospect of bankrupting it as boomers flood the nursing homes, if nothing is done about prolonging the dying process soon, must have delighted the wingnuts.

Mark Evanier has written stories of his parents' lives many times on his blog (, but the latest is relevant to considering the absurdity of pointlessly prolonging human misery:

When someone close to you dies, you look for that silver lining, however thin and fragile it may be -- some way to 'spin' the death in a way that's more comforting to you.  I had no trouble doing that...when my mother died because she really wanted to go.  She was verging on blindness and a life which did not contain one single thing that brought her any joy.

Mark's father, many years earlier, had seemingly willed himself not to live on as an empty shell after his third heart attack.  He knew he was not going to

recover to the point where he could walk and go out and get into his car and drive somewhere and do something useful.

Despite his own express desires, and the presence of a carefully written living will and clear health directives, there was nothing we could do to stop the endless and fruitless medical interventions during those bedridden nine months my father endured. Only twice were people candid about what the situation was.  Early on during that period, I talked to the rehab hospital care coordinator when everyone else was out of the office and the door was closed, making it clear I wanted her honest assessment apart from the official script of false comfort (Plaza West in Florida is part of a giant corporation).  She said quietly, "he's not going home.  This is it."  And on the last admission to the hospital after being moved here, while Dad was still unconscious in the emergency room, a young doctor took us aside in a shadowy corner and asked what we wanted.  ...He said we were right, and at that point everything changed: he recommended that hospice begin as soon as possible and Dad be moved to a quiet private room. Within a half hour, all the tubes, needles and lines were removed except for an increasing morphine drip.

But a peaceful end could not be found much earlier despite there being no hope of recovery.  Does that make any sense?



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