February 25, 2010--Pulling the Plug

We had a difficult conversation the other day with my nearly 102-year-old mother. She is in as perfect shape as one could hope for someone her age. Or for that matter, for someone 10 to 15 years younger. But she and we know that the actuarial realities are closing in. So to talk with her about what to do when-and-if was not only emotionally difficult but realistic.

She is very thorough and thus for many years has had all her affairs in order, has a careful will, a DNR form to give to any hospital in which she might wind up, and lots of stories to tell about friends in the retirement community where she lives who are in terrible medical trouble--including incipient dementia, deep depression, and days of physical pain.

There is one friend with whom she is very close. They served together on the residents board of their building and worked closely together on a number of complicated projects, including gathering from all residents money for holiday gifts for the staff. This took a lot of time, political smarts (not everyone was equally generous), and lots of bookkeeping skills to manage the accounts.

Prior to retiring, my mother's friend was the principal of a public elementary school in south Florida. She was among the first in Dade County to hire African-American teachers and was so beloved that a group of her former colleagues would come each month to where she lives to take her out to lunch.

Now, she is lost in Alzheimer's. The only person she appears able to recognize and acknowledge is my mother. Beyond that she is confined to her wheelchair and apartment.

When my mother thinks about her and others she has known, she talks openly about what she would like us to do if she ever winds up in similar circumstances. And so the conversation the other afternoon was about that.

"I have had a good and full life," she said without a hint of sadness as she felt the encroachment of time, "But I also know that even tomorrow something could happen to render me helpless. Of course I would like to go to sleep one night and not wake up. That I suppose is what everyone would wish for. But I know enough to know that this may not happen." We didn't say anything. "So we need to talk about what I would like you to do if that occurs."

"Of course, mom," I managed to say. "Anything you want."

"I do not want to just be kept alive. For what purpose would that be?"

"Maybe for you and for us too to become ready for what will follow," Rona said. "For many people who do not want to be on life support it is still important, if granted the time, to prepare themselves."

"That I understand. But I am already prepared. You don't get to my age and not make preparations. Both practical and emotional ones."

"We will, I mean we would of course carry out your wishes," I said, "though it would be difficult to make that decision if . . ."

"But it is not your decision," my mother cut in, "but mine. And I have already made it. But let's talk about other, more pleasant things," she quickly added, "like what is happened in the Olympics. Did you the other night see . . ."

I had watched the Olympics but though I too sought distraction remained lost in thought. Complicated thoughts.

These matters are never easy to think about much less discuss. And they are more difficult when they move from the seemingly theoretical when one is younger to the more pressingly realistic as one ages. So it was helpful, but still complicating, to read a recent column in the New York Times about end-of-life care and decision making. (Linked below.)

Complicating since when actually faced with what to do, often all the planning and previous decision-making is put to the ultimate test, literally the ultimate test, and searing emotions get in the way of well-crafted plans. The legal paperwork may all be in place, but then the stark confrontation with mortality and death can sweep all of that away.

The Times quotes one doctor whose grandmother, deeply demented, was admitted to her hospital with pneumonia. Her grandfather, also a physician, who though throughout his life called pneumonia "an old man's best friend" in that it can lead to a relatively painless death, when he saw his own aged wife taken with this "friendly," potentially life-ending illness, just what he had hoped would one day happen, wanted for his wife "nothing short of heroics."

They were administered, his beloved DeeDee was saved, and then returned home, still demented, still cared for by aides 24-hours a day.

DeeDee's granddaughter said, "My intellectual feeling is that [heroic methods] should not be permitted. We have to set limits. How is the health care system still standing? At some point something has to give."

"But," she then said, "if we don't think about the emotional nature of our decision-making, then no amount of data will change things."

On the other hand, more dispassionately, Dr. Norman Frost, a physician and ethicist at the University of Wisconsin, uttered a version of the unthinkable--"If you can't say no to things that won't work, God knows what the limit is." Again, he feels, extreme measures to prolong life are not only costly and thus threaten to bankrupt our health care system, but they are also, if administered for emotional reasons, "an extraordinarily expensive form of psychotherapy."

But then there is Deedee. And my mother.