(The following continues coverage and discussion of an initiative regarding efforts to let dementia patients “refuse” assistance to eat. We discussed this in November 2017. You can check out that blog post here.)
Journalist Mike Bassett has a new online article out in Today’s Geriatric Medicine. It involves the latest initiative from “End of Life Washington” (EOLWA). As mentioned above, it’s been discussed on this blog before.
While disability activists and others in the social justice community have been rallying around the threats to the ADA, Medicaid, Medicare and other vital parts of the social safety net, organizations like EOLWA still see our biggest problem is that it’s allegedly too hard to die. In this case, the allege that too many people with dementia are being fed against their will.
Bassett’s article in Today’s Geriatric Medicine is very good. He includes the voices of reps from EOLWA, Alzheimer’s Association – and me, representing NDY.
As we’ve seen over the past few decades, narrow initiatives like this act as door-openers, in which a narrowly-defined “refusal” of life-sustaining treatment expands over time both in terms of the groups who may exercise this “right” and the level of proof a surrogate needs to “exercise” that right on the behalf of someone who cannot communicate those wishes themselves. What makes this initiative a bold step is that it shifts manual assistance in eating and drinking as a form of medical assistance – a radical difference in framing something that has historically viewed as basic care.
It’s vitally important that anyone who needs assistance to eat, who supports someone with those needs, or loves someone with those needs to keep this issue on your radar. It’s headed your way, sooner or later.
Please go and read the whole article in Today’s Geriatric Medicine. It’s titled Judicious Feeding Options at the End of Life.
When my Dad was in the processing of dying with dementia, he’d eat the food I made from his Mom’s recipes, but not other. As soon as I saw his connection with others had faded I got him into hospice. He was so comfortable there and they let me bring his favorite beans and cornbread and wine that was thickened. Mostly he was happy to see it and would have a spoon or 2 of it and drink the top sip of the wine. The Florida hospice was good and in line with NDY and ADAPT.
Thank you for all the work you do educating us and fighting for us.
Thank you for sharing this. We forget what powerful triggers smell and taste are for memories. We get a lot of horrible stories here. I appreciate your sharing a story showing there’s still kindness and care in the world.
In a recent Canada decision a demented patient had forced on a spoon put to her lips. She did not refuse it. If she was ready to die she would have refused it. (I think)