Monday, December 29, 2008

The whole manuscript of uncertainty....

Annals of Internal Medicine recently published a fantastic personal reflection piece about dying, uncertainty, and communication in the ICU. It's one of those essays you read and say to yourself, 'Yes, yes, yes - that's exactly what it's like.' I don't agree with everything the writer (an ICU doc) says, but how he describes the chaos of decision-making, prognostication, suffering, grief, and hope is very familiar and true-to-life.

A quote about goal-setting discussions:

At first I thought that I had a talent for these discussions, that they were something others avoided that I could do. But that isn't quite right. In fact, these are opportunities for performance, and I seek them out like strong coffee or difficult procedures. I like to talk to people who are reforming their lives in front of my eyes, who need certain bits of information to piece together sense from chaos. I'm not empathetic—I don't suffer with them, but I watch closely, looking for clues to what they need, doling out the little packets of information that they can use to build a framework of understanding of the future. As in poetry, an economy of information is key, and you can't rush delivery.
While I can't say that I 'enjoy' those 'performances' much myself, I constantly teach my fellows/other trainees that what families need is a story, a 'medical narrative' which will allow them to make sense of what's happening. This is an aspect of this sort of communication that I think most of us do whether we know it or not, but is rarely talked about. Another quote:
Uniformly, these people want the return of what's been lost, as it was before. Occasionally we deliver. But more often we are talking about wreckage, about what's left, and what, if anything, might be possible. What's said is rarely what's heard. Although the delivery and message don't change too much, sometimes I'm thanked for the straight story, other times for giving hope, and then sometimes I'm chastised by an angry family who feels somehow robbed or betrayed. They fasten onto a look or a word, onto the tone of voice, or pace of speech. I have a few solid things to tell these people: I can tell them what happened, and sometimes why it did. I introduce them to the doctors and nurses and therapists they will see every day. And then I do my thing. I sell them smoke and shadows, clouds passing in the dark, the whole manuscript of uncertainty, as delicately and proudly as I can, because it's the only truth I have.
Thanks to Dr. Sean Marks for sharing this with me.

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