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Negotiating Life's End: Part Two

(right:  Dad at 19; everthing about him was big -- not just the hair)

My step-mother's disembodied voice rose up from my answering machine last week with the words we're all afraid to hear: 

"Vickie, your Dad's in the hospital; his condition is not good;  please call me."

The last time I'd seen my dad, about two weeks earlier, he'd been sitting in his favorite chair with his eyes closed.  Part of him, the seeing part, wasn't much interested in being there.  

But dad was a talker; a spellbinding story-teller in the Irish tradition even though he liked to identify more with the Swedes in his lineage.  Vikings you know.  Warfare.  Being a manly man.   

Dad married the second time when I was in elementary school.  His first marriage to my mother having been a  failure of spectacular proportions, he took pains to begin my instruction in the basics of a happy marriage as soon as his second chance at marital bliss presented itself.  

"At the end of the day," he said when I was only 12 or 13, "the man gets to tell his stories first.  You can talk about your own day as much as you want.  But you have to make sure your husband goes first."    

Now, at 85, in the late stages of Parkinson's, Dad wasn't even having a day, let alone telling it, and certainly not telling it first.  

As dad sat immobile in his "easy" chair, you could hear the disease strangle the narrative out of him -- the mild dementia; the increasingly rigid muscles in his throat; the way he forgot the entire point of what he wanted to say by the third or fourth word he managed to slip past his captors.       

But he hadn't been anywhere near dying.

The Feeding Tube

As I drove out of the Los Angeles basin up through Laurel Canyon and down into the San Fernando Valley, Juanita, my father's third wife, was telling me by cell phone that Dad's Parkinson's was preventing him from swallowing.  He couldn't eat or drink.  He was choking.  The hospital was suggesting that a surgical feeding tube be attached and Juanita understandably wanted his children to help make the decision.

Dad, a life-long, semi-agnostic Protestant, was in a Catholic Hospital.  If his condition deteriorated badly -- if he entered a vegetative state -- I was worried about becoming immersed in a Terry Schiavo controversy.  I needed to know whether the hospital would later consent to the removal of a feeding tube.  That was my mission.  To find that out.  I called a friend in the healthcare industry who told me who I should talk to and what I should ask.  I was prepared.  

Your Father's on the Roof 

There's a old joke about friends -- we'll call them Bill and Jean -- who take care of the neighbor's cat while the neighbor -- we'll call him Phil -- is on vacation.  Upon his return, Phil rings his neighbors' doorbell only to have them immediately announce that Phil's cat is dead.  

Phil protests. 

'You're not supposed to come right out and say my cat is dead," says Phil.  "You're supposed to prepare me.  You're supposed to say something like, 'we were feeding the cat but he ran out the front door when we weren't looking.  He climbed up on the roof and couldn't get down.  We called the fire department and they raced over but the fire fighter who climbed up to the roof lost his footing on the way back down.  He managed to save himself but dropped the cat.  We rushed to the vet but there was nothing the vet could do.  We're terribly sorry but your cat had to be put to sleep.'"  

Everyone paused.  Finally, Bill said, "listen, we dropped by your mother's house last night and while we weren't looking she climbed up on the roof . . . . . . "

Dr. X Delivers Bad News

I arrived at my father's hospital room at the same time Dad's primary physician, Dr. X was making his rounds.  I introduced myself as Don Pike's daughter and asked about my Dad's condition.  For reasons I didn't understand, this seemed to irritate Dr. X.  

"What do you want to know?" he asked, eyeing me suspiciously.  "Your step-mother has already decided what will happen."

"And what is that?" I asked, not having yet had the opportunity to speak with my step-mother since our cell-phone conversation fifteen minutes earlier.  Something must have changed in the interim.

"It's quite simple," said the doctor, as if he were speaking to a child.  "Your father can't swallow.  His wife doesn't want the hospital to insert a feeding tube. We'll send him home with morphine to ease the pain.  Without food, he will quickly die of renal failure."

They say anxiety interferes with the functioning of the brain's higher "executive" functions.  So I wan't thinking very clearly.  

"You're going to let him die of starvation?" I asked.  "I mean," I was almost stuttering now, "you're gong to starve him?  Why?  What is his prognosis?"

Though the word "starvation" carried the most emotional wallop for me, it appeared to be my use of the word "prognosis" that disturbed Dr. X.

"Prognosis?" he asked, glaring at me now.  "Prognosis?  He's in the last stages of Parkinson's disease.  That's his PROG-NO-SIS."

My step-mother -- a member of a generation trained to accept whatever doctors say as holy writ  -- tried to intervene -- begging me not to "fight" with the doctor.  "Please, honey," she implored, "it's hard enough as it is; just do to what the doctor is telling you to do."

Throughout this debacle, my father was gurgling as if he were drowning.  Only when his moaning reached a certain pitch would the nurse come in to suction liquid from his throat, encourage him to cough up whatever fluid was in his lungs, and then suction that as well.  Like the dentist does, except you're generally not drowning when you're having a cavity filled.   

I didn't want to make trouble for my long-suffering step-mother, but I'd just heard that everyone had decided to starve my father to death in my absence because he was in the "last stages" of Parkinson's and I didn't know what that meant.

Information Gathering

"I don't know what end-stage Parkinson's means," I finally said, feeling dizzy and wishing I could sit down somewhere.  On my father's bed perhaps where I'd form a physical barrier between him and this angel of death in a white coat sporting his emblem of authority -- the ubiquitous hospital stethoscope.  

"I don't know what 'final stage' Parkinson's looks like," I muttered, feeling chastened but unwilling to simply "let the matter go."  

Perhaps he was emboldened in his anger by the way I was looking at my shoes, temporarily "unmanned" if a woman can use that term. For whatever reason, Dr. X took the opportunity to stride toward my father's bed and rip the sheet away from his frail, bruised and half-naked body, revealing not only a form that appeared to be entirely convulsed in uncontrollable spasms, but also exposing my father's one quiescent appendange -- his soft penis, curled passively just below the edge of his hospital gown.

"This," snarled Dr. X., sweeping his hand from the top of my father's head to the tip of his toes, "is what late-stage Parkinson's looks likeIs this what you wanted to know?"  he asked, as if in the very asking I'd brought this agony upon myself and my exhausted step-mother.  That I'd just made myself complicit in my father's continued suffering.  That this pitiable wreckage of the man who taught me to raft Class Four rapids was somehow my fault.   

Mea culpa, mea culpa, mea maxima culpa

"This is not your decision," Dr. X continued, without having the decency to cover up my father's nakedness.  "You have nothing to do with this and nothing to say about this.  Your step-mother has the Power of Attorney and she has already made the decision."

Then all hell broke loose.  I began to shout and, I must admit, also to cry, as my step-mother lunged out of her chair to push me back against the wall, away from Dr. X and my father.  "I'm his daughter," I remember repeating and "Juanita asked for my help in making this decision." I'd also lashed out at Dr. X, saying something about improving his "bedside manner."  But nothing had any effect until I said two words. 

They were "informed consent."

"I don't think I have enough information to give my informed consent," I finally said.  Though this phrase came automatically, it arose from my legal training.  It is an unquestionable code term for "make one more move and you'd better check your malpractice policy.  Doctor."

And then I recall telling the doctor to leave.  "Get out," I think, is what I said, "just get out!" as I reached over to pull the covers back up over my father's thin and trembling body.  As Dr. X obeyed this command, as he slipped behind the hospital curtain and made his way to the nurse's station where my father's chart resided, I shouted behind him, "and send me the hospital social worker!!"

Next, the social worker, a palliative care nurse and hospice services.  

Comments (1)

Read through and enter the discussion by using the form at the end
Cordelia - June 1, 2008 1:52 AM

Vickie,

Wow! Perhaps your dad's doctor should educate himself on palliative care. If there were an etiquette on death and dying, he certainly would need more than a refresher course.

Follow your gut, follow your heart and your mind will take you there. Your strength will come to you through your dad, now and after he's gone.

You are, after all, your father's daughter. I always knew that.

Great photo of him, by the way.

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