NY Times guest opinion essay on paradox of PWD and advanced directives

dancsfo

The NY Times has an interesting article about advanced directives and PWD.

Whose wishes ought to be honored 1) the pre-dementia person who wrote the directive, or 2) the current PWD?

(the shared gift article link is valid for 30 days)

storycrafter

Well written article brings up an interesting and important question. Thank you for the link!

M1

Very well written, I've seen other articles by him. But it challenges the whole concept of advanced directives-why bother writing them in advance if you're not going to honor them?

Iris L.

This doctor is struggling with the same struggles that members post about in the very late stage. It could help him to read the book, Hard Choices for Loving Families.

Iris

dancsfo

https://alzconnected.org/discussion/comment/186434#Comment_186434

Thanks for referencing other articles written by Dr. Sandeep Jauhar in the NY Times. I also found his book and interviews (see link below) with him when he wrote his memoir on his experiences. I think that even a physician (he is a cardiologist) struggles with these issues (e.g. the discussions he had with his siblings) shows that it is not an easy issue to deal with.

https://sandeepjauhar.com/my-fathers-brain/

SusanB-dil

Thank you for posting that.

It would seem to me that the father knew exactly what he meant when he wrote about "a meaningful life" - and it seems that his life was still meaningful - albeit that 'this' may not quite have been what his father meant at the time. a bit of ice cream, spending time with friends and family... and he was content.

dancsfo

There is a follow-up set of letters to the editor with good observations. This is a complex issue. One letter stated: "Advance care planning is inherently problematic given that we cannot predict our future ailments and, importantly, cannot predict how we will feel about our quality of life when we’re afflicted with serious illness."

and referenced that Dr. Barak Gaster, who has published a now widely used Advance Directive for Dementia which addresses life-support choices in the various stages of dementia, that is free to download and use. The New York Times article from 2018 on this directive is here.

Quilting brings calm

It seems to me that the author of the article was experiencing denial or an inability to say ‘it’s time’. These are his issues, not his father’s. His father made a decision at a time in his life when he was fully capable of understanding how his world would shrink and he didn’t want that -for himself or his family.

Thankfully the brother honored the advance directive. My mom has asked for this and I will honor it.

I’d like to read an article where the struggle is the other way- an advance directive that wanted everything possible done- and the patient is now in a condition that makes that directive problematic or ill advised. Such as dementia or a situation involving intubation, feeding tube, severe stroke, etc. my step-father is so wishy washy on the subject. Says he doesn’t want to continue to see doctors, or have invasive procedures, but also statesmd he wanted a full code if his heart stops ‘and they can fix it’.