Saturday, August 22, 2009

End of Life Counseling

My brother has a 1966 Land Rover. It’s 43 years old. Not bad for a car, or I should say truck. His wife used to commute in it between Manhattan and New Jersey, but now he keeps it at his place in upstate New York. Over the years he and Scott, who runs a garage in the nearest town, have developed a hobby of keeping the Rover running. As I recall, this once involved replacing all four brakes – only one was functioning. Carburetors and things like that have come and gone. The speedometer didn’t work for about a decade, so the mileage is a bit understated. Recently Scott replaced the rear springs and shock absorbers and welded a new rear quarter frame in place because the old one had rusted out.

I hasten to add that my brother only drives the Rover to the dump, or transfer station as it’s now called, at a pace that would please a Victorian dowager. Cars that are 43 years old do have their limitations. Oh, and he also uses the Rover to drive around in the fields and pick up stones for the stone walls that he likes to build.

The lesson that I draw here is that it is possible to keep some vehicles on the road virtually indefinitely.

What does this story have to do with end-of-life counseling? Simply this: People are not automobiles. We grow old, and at some point we get sick, or perhaps we simply wear out, and we die.

Many, many people have a hard time accepting this simple fact of life. After all, isn’t there a pill for everything, or possibly an operation, perhaps a transplant?

Well, frankly, no. The lack of realism that surrounds the end of life in this country sometimes astounds me.

But then I have an unusual background. I come from a medical family. My father was a doctor – a surgeon – and my mother was a nurse until they got married. His hello line was, “Have you seen Snow White?” And their first date was Walt Disney’s Snow White, at Radio City Music Hall.

During his sixties, my father contracted hepatitis from a needle stick while performing a surgery. The hepatitis severely damaged his liver, which (I’ll spare you the details) led to something called esophageal varices. Occasionally the blood vessels in his esophagus would burst, and he would vomit blood. On his last admission, he warned my mother to insist that the ambulance bring whole blood, because he knew he would not survive the trip to the hospital without it.

There was an operation, called a portal-caval shunt, that my father opposed because the outcomes were often extremely poor. However, faced with the option of death, he agreed to the procedure. I have often thought that he did this for us, and not for himself.

The surgery was successful, and my father was a vegetable with non-functioning kidneys. He went through several rounds of dialysis, in the hope that his kidneys would restart. Didn’t happen. And so, one evening, in a rather scruffy lounge at St. Luke’s Hospital, daddy’s doctor, whom we had all known for many years, sat down with my mother, my brother, and me, and suggested it was time to make my father comfortable and let nature take its course. We agreed.

Years later my mother, having fought breast cancer to a standstill, having fought leukemia to a standoff, came down with cancer of the pancreas. She wanted to stay up in the country, which was where she had been born and grown up. We discussed bringing her to the city and pursuing aggressive therapy. She didn’t want it. She was done. She knew it. She could feel it in her body. She died in the country. Most of the time she was at home, but she spent the last few weeks in hospice. I was sitting next to her when she took her last breath.

One of the great benefits of facing facts is that you may get an opportunity to say goodbye. We had that with my mother. With my father we did not. I recall, as he was heading in for surgery, saying that we’d talk again soon. He looked at me with a look that I did not understand at the time, and replied that he certainly hoped so. That was the last time we talked.

I cannot begin to tell you how important I think end-of-life counseling is. I’m to an age where it’s not just the older generation that’s dying – it’s my generation. And still I see the mind-set. Fix me, Doc. Roll me into the shop and bolt on a new carburetor. Well, maybe. But maybe, in your case, it’s not possible. Or maybe the treatment would inflict agony out of all proportion to the few days of life to be gained.

I do believe this conversation should be between the doctor and the patient, or the patient’s family. But it should take place.

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