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Not pain, but distress about disability

The Oregon reports show the first five “end-of-life concerns” deal with not pain, but “existential distress” over the disabling aspects of serious illness, from depending on others for care to grief over lost abilities, loss of social status (“dignity”), incontinence, and feeling like a burden. Proponents speak of “quality-of-life.”

Leading California prescriber Lonny Shavelson says, “It’s almost never about pain, it’s about dignity and control.” Palliative care expert Ira Byock said that almost all pain is controllable, and that marketing bills as all about pain “is a bait and switch.” In the eyes of the state, everyone must be seen as having equal dignity. We champion fully funded home and community-based services, for a caring society rooted in mutual aid and interdependence.

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