Negotiating Life's End: Part Four
(Dad with his One True Love -- the Boat -- July 4, 1976)
We tell ourselves stories in order to live. . . . . We look for the sermon in the suicide, for the social or moral lesson in the murder of five. We interpret what we see, select the most workable of the multiple choices. We live entirely, especially if we are writers, by the imposition of a narrative line upon disparate images, by the "ideas" with which we have learned to freeze the shifting phantasmagoria which is our actual experience. Joan Didion, The White Album
The poem, then, is not a transcription of an already known world, but a process of discovery, and the act of writing . . . is one that demands personal risks. [The poet does] not write solely in order to express himself, but to orient himself within his own life and take his stand in the world and it is this feeling of necessity that communicates itself to a reader. [P]oems are more than literary artifacts. They are a means of staying alive. Paul Auster, The Poetry of Exile, from The Art of Hunger.
[T]he process of revising a poem is no arbitrary tinkering, but a continued honing of the self at the deepest level. Jane Hirshfield, Nine Gates - Entering the Mind of Poetry.
[T]o safeguard what little equilibrium I still possessed, I chose to sit as I have been sitting all my life, in a chair, at a desk, under a lamp, substantiating my peculiar existing in the most consolidating way I know, taming temporarily with a string of words the unruly tyranny of my incoherence. Philip Roth, Operating Shylock.
Palliative and Hospice Care
"You can't tell families that their only choices are surgically attached feeding tubes or starvation," my friend Jay the hospice director is saying on the morning after my run-in with Dr. X.
Jay and I are standing on the steps of the West Hollywood Kiwanis Club, where I attend a regular morning meeting with people whose history and spiritual values are similar to my own. Although we're on a major urban thoroughfare undergoing reconstruction of the jack-hammer kind, the scent of night-blooming jasmine still lingers in the cool morning air.
"We express love with food," Jay continues, "and care-taking. When a child skins his knee, mom doesn't just put a band-aid on it, she offers cookies and milk 'to make it better.'"
I relax for the first time since Juanita's call. Jay gets it. It's not just about the mechanics, the diagnosis, the prognosis, or the treatment plan. It's about love.
Holding my hand while tears stream down my face, Jay tells me how to feed a man who can't swallow. "The little honey bear," he's saying, "you tip it into your father's gum where the ball players keep their chewing tobacco. Rub it into his gums. Not only will it provide instant nourishment, it crosses the blood-brain barrier. It will improve his cognitive functions as well."
Jay pulls a clutch of business cards from his pocket -- cards he has gathered from every hospital in the greater Los Angeles area. He scribbles the name of the hospital's palliative care nurse on the back of his own card.
"Tell her I gave you her name," Jay says, knowing how irresistible it is for us to pay more attention to people we believe to be "inside" our circle of friends and colleagues. "Call her on your way to the hospital," he says, giving me one more squeeze for courage before I go.
"It's Not Your Decision"
The palliative care nurse has already arrived in Dad's room by the time I make my way out into the deep reaches of the San Fernando Valley. She and my step-mother are going over the details of a plan for home-hospice care. Dr. X will confirm that dad has less than six months to live. Once he delivers that verdict and signs the order releasing dad, the hospice people will arrange everything -- delivering a hospital bed; medication and equipment; assessing medical and nursing needs, even providing pastoral care.
"What about the new medication," I ask. "And the new diagnosis?"
"That's not the direction we're going in," says Juanita as I listen to my father struggle for breath behind her. "We talked about this, your dad and I. I'm sorry I let them put the feeding tube in. I know what he wants and I'm the one he chose to make this decision for him."
"Will he be fed? Hydrated?" I ask.
"No honey," my step-mother responds. "There's no quality of life here. There's nothing left for your father to live for. He's dying. He's suffering. It's time to let him go."
There's Nothing for Me to Negotiate Here
I've been trained to wrest control from the uncontrollable since law school. Define goals. Frame questions. Information gather. Brainstorm. Plan strategically. Marshal resources. Make demands. Couple them with consequences. Be supple, flexible, responsive, but firm. Stay "on message." Negotiate on my terms and preferably on my turf. Prepare, prepare, prepare. Move, move, move.
I'd been in crisis mode since Juanita's telephone call. But I'd never stopped to ask myself the first question any advocate or negotiator should ask.
What was my role here? And if I had one, what were the scope of my duties? What did my father -- my "client" want? And if I didn't know the answer to that question, where could I look to ascertain it?
Dr. X had actually provided me with the answer to these central questions the first afternoon I'd arrived at the hospital. But I wasn't ready to hear it. And he wasn't trained to deliver it.
In one of those small waiting rooms where families await the fate the their loved ones, I'd sat with the hospital social worker later that same afternoon.
"Don't they teach these doctors active listening?" I'd asked after recounting the Dr. X catastrophe to her.
The social worker put her hand on my knee and said, "you're not the mediator here. And you're not responsible for the result. Your step mother has the power of attorney. She's the one who will make the decision. The only thing you have to be is be the daughter."
But I wasn't ready to hear it then either, even though the social worker was ever so much better at expressing it.