Private pain, private choices

— "Well, she's practically incoherent. She's not eating as much or taking in as much fluids as she was. She's sleeping 16 hours day." The director of nursing at the nursing home was reading from Mother's file.

"It's the Parkinson's, Paul," she said. "It's finally taking over."

I look at the hospice nurse. She nods her head.

I remove my glasses and rub my eyes.

"Is my Mother dying?"

"Yes," comes back in stereo.

"Actively dying?" What a curious phrase. Learned it from a lawyer friend in Mississippi who represents nursing homes. She told me to ask it.

"Not yet," says the director. "But it will be sooner than later."

"Can you give me a time frame?"

The two nurses look at each other. Shoulders shrug. Hands go up, palms first. Who knows?

"4 to 5 months. Maybe less," says the hospice nurse. "You never can tell."

A couple of minutes go by in silence.

"What do you want us to do," asks the director of nursing. "We need to get on the same page here now that we can see the end."

She says it gently yet insistently.

"Do you want a feeding tube?" asks the hospice nurse.

"No. God no. She wouldn't want that. I mean she signed an Advanced Directive years ago. There is no quality of life here. She wouldn't want that."

"So what do you want?

"I guess I want . . . what I'm trying to say is that . . . with the Parkinson's andall . . . it might be just best to late nature takes its course."

"Well, let's think about what that means," says the hospice nurse as she looks at the back of her hand. "What if she gets a urinary tract infection. UTIs are part of nature. Are you saying you don't want us to treat that?"

"No. I mean, I never thought about that."

"That's why we are having this meeting. We need to come to an understanding."

"Look," says the director. "I'm a firm believer in fixing what can be fixed. If she gets a UTI we treat it. If she gets a upper respiratory infection we treat it. She gets a mild case of pneumonia we treat it. She starts getting recurrent upper respiratory deals, well then, we are in a different ballgame."

"Well, let me ask you this."

"OK."

"What if we tried to help her eat more? What if we tried a feeding tube? How long would that extend her life?" I felt I had to ask.

The nurses look at each other. They shrug. Lots of shrugging going on today.

"I don't know," says the hospice nurse. "3 weeks, maybe? You never can say for sure, but that would be my guess."

It becomes fixed in my mind at that point.

"Clearly, there can be no good outcome to this situation. She will not get better."

"No. The longer she lives the worse the Parkinson's will be. Eventually she will lose the ability to swallow."

"But it's my understanding that treating these minor infections is consistent with palliative care."

"Absolutely. Your mother will not suffer. I promise," says the hospice nurse.

"So that's what we'll do."

"That is absolutely what we will do."

After the meeting I went back to see Mom. She is in bed. She is almost always in bed. I was surprised to see her awake.

"Hey," I said.

"Hey you," she replied. "Boy."

I'll take that, I thought.

"How are you?"

"Bad," she said. "It's bad."

I stood there for about 20 minutes holding her hand. Her talk is virtually unintelligible. I nod and say "um-hmm" a lot. Sometimes I just tell her that I am sorry but that I just can't understand her. Those are the worst moments. It causes her to reach up with her free hand as if she could retrieve words from the air.

I kiss her on the cheek. I gotta go. I head for the door.

"Boy, you be careful now," my mother says. Just like she always has.

The irony of this particular benediction at this precise moment in our relationship is not lost on me.

Much is being made of the proposed health-care reforms that are currently under consideration. Some of the complaints about the reforms are pretty untethered to reality. I've heard the less sane commentators among us equate tax payer funded discussions regarding Advanced Directives and end of the life care as tantamount to acceptance of euthanasia. This is, of course, preposterous.

While Mother paid her lawyer with her own money to draw up the Advanced Directive as part of her estate planning some 18 years ago, her hospice care, her end of life care, is being paid for by Medicare. And to the best of my recollection no representatives from the government were at the meeting withthe nursing home. No member of Sarah Palin's government "death panel" was prescribing any of these difficult decisions. And yet in a very real sense, the medical professional and myself were rationing my 86-year-old mother's health care for her final days pursuant to my understanding of the wishes expressed by her freely in the Advanced Directive. These are prudent measures under these dreadful circumstances. She would not want this. After all, it's bad. Real bad.

My mother is not long for this world. God will take her in his time.

God. Not the Secretary of Health and Human Services.

And anybody that believes this will change in any legislation that finally lands on the President's desk is simply delusional.

Arthur Paul Bowen is a writer and lawyer. He lives in Little Rock

Perspective, Pages 74 on 08/23/2009

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