Saturday, August 22, 2009

'No other'

My goal is to write about palliative care from the perspective of my very limited experience of the phrase. The vein of material isn't exactly rich yet. So far, I haven't gone much beyond accepting more intensive home-nursing services and letting myself articulate palliative care for me personally as a possibly beneficial idea. Going even that far has been hard.

But I'm still upset about the political death panel distortions, and Pauline Chen has a nice column about some of the difficulties and shyness on the physician's side of the conversation, so I thought I would link to that briefly and save my own chaotic views for later. My thought is that here, again, is a place where carelessly applied cancer metaphors can cause so much unnecessary pain. It's easy to think about ending curative treatment of tumors as "giving up" -- but isn't shifting your approach to an illness that isn't getting substantially better more akin to letting go? Or a dozen other phrases that any person or family in the midst of this situation could dream up?

As someone who has written an entire book about the difficulties of caring well for the dying, I find all the fury aimed at halting support of end-of-life care discussions more than a little ironic. Why? Because the truth is that most of us need all the help we can get to start these difficult conversations. The truth is that we never talk or even want to think about talking about dying because we are afraid of dashing our loved one’s or our patient’s hopes. The truth is that we fear — even abhor — these discussions because we believe that by talking about dying we are giving up.
Chen also describes some research findings alluded to here that I still find shocking: Only about one-third of terminally ill patients have discussed end-of-life care with their doctors.


This is a narrative that works well with Chen's Web essay. It's tough, but very smart and and informative. My pullquote doesn't really do it justice:

His coolness is his armor. “I do not feel obligated to be sort of eternally involved with the experience of death,” Dr. O’Mahony said. “It’s not healthy to be there all the time.”

But the danger is that “death gets to be banal,” he said.

“Do you know that poem by Dylan Thomas?” Dr. O’Mahony asked with a faint smile. “After the first death, there is no other.”
THE OBLIGATORY DISCLAIMER: Let me reiterate that I'm absolutely not sick like the people in these articles yet, and my doctors agree. I am not using "palliative" as a euphemism for "hospice," "terminal," etc. While I am obviously not a well dude, the fact that I had a decent scan recently and that some things are going pretty well for me at the moment are giving me the strength to look hard at things that scare me.

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