Monday, August 24, 2009

An end of life discussion...

So this was how it was supposed to happen - my father would not feel pain; he would not feel agony; the end would come swiftly and relatively easily, probably around Thanksgiving.

That's what we were told by the doctors the summer after I graduated from college. My father had kidney cancer - and had been born with just one kidney, which had complicated the treatment. When remission ended and the cancer returned, my father made the decision not to pursue aggressive treatment to prolong his life. He'd watched his beloved wife die of cancer ten years earlier and saw no point in extending the agony that comes with dying of such a disease.

I was the oldest of three girls. My father was a widower. My two younger sisters went off to college a week after that initial "end of life discussion" and my father and I were left alone to contemplate the end of his life.

For some months, it was as the doctors had told us. Not too much pain or discomfort. A growing weakness. A need for periodic blood transfusions for a reason I can no longer remember.

Thanksgiving came and went. We celebrated with extended family. It was a hopeful time - we gave thanks and hoped we'd celebrate yet again with my father the next year. Hope dies last, when dealing with end of life issues. At least for me.

And then the pain came. His kidney - what was left of it - began to fail. His body retained fluids. His legs began to swell and itch horribly. He could not sleep. He could not rest. He would vomit before he could reach a toilet. He felt his illness was a horrible burden for me. I felt horrible only because there was nothing I could do to alleviate his suffering.

As time passed, we had additional "end of life discussions" with our doctor. And the predictions of a pain-free demise shifted when the pain came. We started talking about pain relief and true end of life issues.

Once, near the end, I showed up at the hospital and discovered my father was no longer himself. He had become shrouded in a cancer-fueled haze of pain. I left the room, sobbing with grief. The doctor told me that I should just turn around and leave - to curtail the visit - so that I would not think things I would regret later.

I did not curtail the visit. And as I sat next to the dying man, I thought all those things the doctor thought I might regret. I hoped for my father's death that night. I fervently, with all my heart, wanted the end of his suffering, which meant his death.

And I do not regret that at all. I've never regretted those thoughts. Ever. There comes a point when wishing life on a terminal patient is one of the worst tortures you could wish for.

End of life counseling is nothing I'd wish on anyone - but it's something that most of us will experience at some point in our lives - either because of our own health issues or the health condition of someone we love. I was young when I had my first "end of life" chat with a medical practitioner. And in my experience, it was not just one discussion. It was an ongoing dialogue that evolved as my father's disease evolved. And only nine months passed between the first end of life conversation and the end of my father's life.

With all this attention focused on health care reform, I find myself agreeing with Charles Krauthammer that perhaps now is a time for a reasonable discussion on end-of-life issues.

But does Congress really need to establish mandated guidelines for this? Apparently yes, as outlined in section 1233 of HR 3200. Is this truly a reasonable way to frame these discussions? Having Congress define the terms?

No, plain and simple. End of life issues are horribly personal and should take place between patient, family and physician. Congress should not be involved in any way at all.

For Congress to set up a five-year plan for end of life chats between doctor and patient is to suggest that physicians don't have these end of life counseling sessions right now, because it's not mandated by Congress. Because there is no box to check on the insurance form. Because physicians won't engage in such discussions unless Congress requires them to do it.

Adding a little "end of life counseling" box to the insurance invoicing form is not reform of any kind. It is an admission that there is no health care in America unless it's first defined as a billable expense. And that there's nothing done by physicians unless it falls within the regulations defined in the hefty health care reform bill that perhaps someday will be passed.

And that is nothing but a prescription for disaster.

No comments: