Nobody Knows What You'll Want--Not Even You
The findings aren't new to the bioethics literature, but it's quite striking to read these two recent articles from Archives of Internal Medicine side-by-side. The first shows that patient-designated and next-of-kin surrogate decision makers incorrectly predict patients' end-of-life treatment preferences in one-third of cases. Neither patient designation of the surrogate nor prior discussion of treatment preferences improved the surrogates' accuracy. The second study shows patients' treatment preferences changing as their health states change. Over time, patients who experience reductions in their abiltiy to perform activities of daily living are increasingly apt to rate treatments that result in disability as acceptable. Also, patients with pain were more apt to rate treatments resulting in pain as acceptable. This, as the abstract laconically puts it, "poses a challenge to advance care planning."-Stephen Latham
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---Over time, patients who experience reductions in their abiltiy to perform activities of daily living are increasingly apt to rate treatments that result in disability as acceptable...This, as the abstract laconically puts it, "poses a challenge to advance care planning."---
This appears (haven't read the reports yet) to simply restate something the disability community has been saying for years: "quality of life" arguments are ridiculously weighted against disability and dismissive of the very learned experience of disability we should all be listening to. Perhaps these studies should be a wake up call, less about "challenges to advance care planning" and more about challenges to listening and undertanding our voices of experience out there.
- by mary on May 3, 2006 at 10:14 AM | link
Perhaps these patients just need to let the bioethicists tell them what they can have.
- by Wesley J. Smith on May 3, 2006 at 3:07 PM | link