Uncle G.'s message said "Call me, as soon as you can."  That's how we knew.  If Papaw was getting was getting better, there would have been details. 

When we called, Uncle G. said "We've been asked to make a decision about removing the ventilator."

"Does that mean what we think it means," my husband, asked.

"Yes," said Uncle G.

"Okay" we said.  Then we packed up ourselves and the baby and drove the two hours to the Scott and White hospital by Ganny and Papaw's house.  We, the family, converged in the 10th floor waiting room: Granny, the 2 kids, the 4 grandkids, and the various assortments of spouses, including myself.  I brought muffins.  This was Saturday, August 1.  We were going to say goodbye.  We were going to join the death panel.

This is a post about politics.  It is absolutely personal, but I don't know how else to address why the nation is so divided about healthcare.  It is personal.  Its about our bodies.   Its about our families.  Its about life and death and death is so impolite.  It breaks schedules.  It’s messy.  it ignores our wishes.  This post is about making one medical decision.  I have tried to tell it simply, but it is not simple.  It has 94 years of family grudges and blind spots.  Its also about the politics of a family, what we fight for.

No more than two or three of us were allowed in the room with Papaw at a time, so we went in shifts.  My husband and his sister, a newly minted nurse herself, went back together.  They've been through a lot together.  Both pulled themselves out of difficult childhoods with help.  My husband was essentially adopted by his martial arts dojo when he was 16.  My Husband's sister was saved by a local community action program that help ssingle mothers get their GED's and pay for nursing school.  She was the class validictorian.  The both deeply belive in communities helping each other.  Papaw didn't.

The quintessential story of Papaw is that as his hearing faded, he never would use a hearing aid.  He denied he was deaf no matter how obvious it became.  Sadly, it took a long time to become obvious, even when he could hear, he didn't really want to listen to what anyone else had to say.   Especially not women or children.  (Even as his children became grandparents.)  Everyone waiting to see this dying man had been persistently, if often gently, dismissed by him for the past 50 years.  He firmly believed himself a classic self-made man. 

After we'd gotten to the hospital and hugged everyone, Uncle G. told us that, on the doctor's recommendation, they'd decided not to continue the ventilators past Monday.  Granny ate a muffin and made a dark joke about doctors.  I don't even remember what it was, just that it was funny, and black, and totally unexpected.  I stifled my laugh and wondered where this wry witty woman had been hiding.

My husband and sister were switching shifts with their cousins, the two other adult grandkids.  All of us married.  All of us with young children.  While they were all there the nurse monitoring Papaw took them aside and said "We know the family has directed the doctor to end ventilation support on Monday.  But we don't really have clear instructions from the family on what to do if he crashes before then, what happens late tonight.  He's often worse at night."   Poor nurse she had no idea what she was stepping into.

Dutiful as always, the grandkids carried the request back out to the waiting room.  The nurse hadn't said, "he's going to die tonight," but my sister-in-law looked at his fluids and monitors and told us that's what she meant.   By "us" I mean our generation of grandkids and spouses.  Telling "the kids", our parents, was . . . complex.  Telling Granny, seemed too sad to bear.

The main complexity was my husband's mother, "Aunt P".  She was Granny and Papaw's daughter and live-in caretaker: also, a very difficult woman who has a various times in her life, generally during custody battles, been diagnosed as having a schizophrenic or borderline-personality disorder.  She hasnever recieved medical treatment, becuase neither she nor her father believed in "that kind of Doctor."  She is functional, in a way, and was enabled by her father.  It fit his world view that a woman would never be able to hold a job, that she would be unable to support herself or really be independent, unless, of course, she was married.  In which case she wasn't his problem, but her husbands.  She in turn, passive-aggressively indulged Papaw's every bad habit. 

This run of hospitalization started because Papaw had fallen on the front path.  He then, in his terrible way, insisted that he didn't need a doctor, just to helped to his easy chair by the T.V.   Aunt P reported to us later that it took four hours to "walk" back into the house with Papaw.  She set him up in his chair with a glass of tea and an afghan.  He said he was in pain.  She brought him some Tylenol.  That's why it was 18 hours before an ambulance was called for 94 year old man with a broken hip and a fever. 

I, the most out spoken of the grandkids and their spouses, had already had one fight with Aunt P  over the decisions the rest of the family was making about Papaw's care.   Uncle G and his wife had been researching live-in rehab facilities when it looked like he might still recover.  They were explaining what they had decided to us, when Aunt P. pipes up and says "Well, don't forget that he might not go."  This caused Uncle G. to freeze, he can't deal with his sister at all.   

"What's he going to do?" I asked, "Run away from the hospital?"   

"He might call people.  Friends of his.  I know I couldn't stop them."

"Fine.  Have the hospital orderly stop these 'friends'." I said, now starting to regret that I had engaged. 

She continued asserting that if she didn't do what her father wanted, he, while bedridden, would kick her out of the house.  This went back and forth for a while, and ended rather abruptly about the time she said "I know you all blame me for not calling an ambulance."   Because, honestly, we did. 

The fact that we all lightly blamed her, that we all got slightly tense and telegraphic when she tried to join the conversation was probably the reason that she spent most of the day sitting on the far side of the waiting room with her knitting.  It was absolutely the reason that after the nurse told the grandkids that she didn't have directions on what to do if Papaw crashed that night, Saturday, before the Monday order to stop ventilation kicked in, we all approached Uncle G alone.  Its the reason Uncle G then turned to Granny without her.   I doubt though its the only reason that when she figured out we were discussing something important she threw a fit.  She yelled at us all that we had no right to make this decision.  “We have to do what he told us!” she insisted.  There was nothing in what she said to argue about, we all agreed with her.  We all wanted to do what he’d told us he wanted.  She was just the only one in the room who felt certain she knew what that was.

Papaw was scattershot.  His yard was full of half finished projects.  His finances were totally disorganized.  I don't think believed he was going to die, ever.   Two weeks before when his condition was good, Uncle G, had briefly and lightly brought up the topic of "well what happens if . . . ."  Papaw had said "well have them zap me twice and if that doesn’t work, it doesn't work."  Of course, "zap me twice" was not a standard of care that the hospital understood.  The doctor's were very specific that if Papaw started to fail over the night and they necessitated, it meant cracking the chest, breaking ribs, manually massaging the heart, injections of lots of drugs, and generally lots of pain.  Papaw's "directive" was a fantasy.  A T.V. version of healthcare.  So the question was turned over to us, the family, the mourners, the death panel:  guilty lay people who couldn't say the words to each other "Papaw is dying."

So what the hell did he mean “have them zap me twice and if that doesn’t work, it doesn't work."   Does that mean “intervene with heroic measures to save me at all costs, even if its only for an additional 24 or 48 hours?”  Does it mean that “once I’m obviously non-responsive to recovery efforts, like never coming off a ventilator on my own, stop trying?”  Does it mean, “I really don’t want to think about my own death so stop asking me?” 

As Aunt P harangued us for even bring this question to Granny, I know all the grandkids were wishing that someone had forced an Obamacare style “death panel” on Papaw.  I know there is nothing in the healthcare bill that would have forced Papaw to face the fact that he was mortal, nothing to force him to draft medical directives, but in that hospital I fervently wished there was.  Papaw would have hated it.  It went against every bone in his body to even permit himself to conceive that he might not be able to direct every aspect himself: of his life, of his children’s life, of his death. Uncle G somehow became a 10 year old boy in the face of that certainty.  Aunt P never behaved older than 16.  The grandkids all crumpled as we watched our parents crumple.  The emotional peril in the family was too great to get the practical questions answered.

These are also moral questions.  They are also political questions.  Papaw would never have voted for a Democrat.  Democrats he felt, did not seem moral, did not speak and act in a moral way.  The promoted weakness.  The were not in his Church.  Papaw church printed cute little pamphlets which he handed out eagerly.  They had titles like The Way of Everlasting Life, Endless Life, The Joy of Forever, and There is No Death.  Everypart of the healthcare debate, except Sarah Palin, irritated him.  He hated socialist anything.  His hospital stay was paid for by medicade.  His fortune was made building houses on contract for the WPA. 

While the rest of us were mulling and parsing what Papaw would have wanted, now that he was sicker, now that we knew zapping twice wasn’t an option, Aunt P went straight to the nurse that had asked us the question.  I don’t know what she said to the poor woman, but that nurse came out almost in tears apologizing to us.  Saying of course they had the order to keep him alive until Monday, and she didn’t mean to put anyone on the spot, to make anyone feel any pressure.  And somehow, though I don’t think anyone really believed heroic measures were a good idea, or even really possible, we all let it go.  The nurse took the question back, at the urging of an upset schizophrenic, and we let her.  Because it was easier.

Here is a family.  A family of differnt ages, different policitical positions, different moral world views.  This family is united in crisis; it knows that action has to be taken.  This  family is trying to do its best, but still the actual decisions are made by the loudest, craziest, least rational person in the room.  This was August.  If we cannot be straight about healthcare with our own families what chance did any townhall meeting have?

Before you could go into Papaw’s room, you had to put on a paper smock, gloves, and a shower cap.  All blue hospital issue.  He had a spore infection spread by surface to surface contact, my sister-in-law gave all of us a lecture on careful hygiene, after all, we were all in contact with babies, and none of us had enough health insurance for a little one to get really ill.  Papaw was deflated, skinny and sunken by his illness.  He couldn’t keep his eyes open, drifting constantly into light restless sleep.  When he was somewhat awake, he seemed unable to focus on anyone or anything in the room.  He shook.  He shuddered and groaned.  We touched his hands and feet.  We sang anything we could think of, Amazing Grace and Silent Night being the ones he seemed to respond to the most.

Papaw died that night.  His kidneys, heart, and lungs were all failing.  I don’t know what measures were expended to save him.  I don't know how much it cost.  I hope he didn’t die in pain.  I hope we did the right thing for the family.  I hope we can all do better for the nation.