One of our AdvoConnection members, Ken Schueler, shared a favorite article of his, published in JAMA a couple of years ago, and a good reminder of one of our roles as patient advocates. Written by Dr. Jennifer M. Soyke, it tells about an elderly patient named Lisa who passed away from Genug Syndrome.
(Unfortunately, JAMA requires a subscription to read this piece in its entirety, so please forgive paraphrasing here – but I think you’ll get the point…)
Never heard of Genug Syndrome? You won’t find it in the medical literature.
Genug is the Yiddish word for “enough” or “enough already!” Lisa had lived a very full life and was full of spirit to the end. Her weak body had been breaking down for years, and she no longer cared to simply stay alive for the sake of staying alive. And so Lisa declared “Genug!”
Medical education teaches, and therefore the great majority of physicians, nurses and other providers, attempt to keep people alive for as long as they can. They are rewarded for that approach, too. They may continue to suggest difficult and expensive treatments (and make a lot of money from those expensive procedures and processes.) Most patients, without truly understanding how and why, go along with those suggestions, not realizing they, too, can cry “Genug!” (Here’s how to pronounce it.)
As patient advocates, it’s up to us to support our clients in their determination of what is right for them. We don’t make decisions for them, but we do provide them with explanations of their options. Whether or not their doctors mention the alternative of no treatment at all, we can be sure to mention that option to our clients when it’s called for.
Then let them decide for themselves when “Genug is genug!”
(If you have a subscription, you may like to read the full version of this article in JAMA. Alternatively, read Judith Graham’s synopsis from the Chicago Tribune.