I was so desperate for useful information.

Journalist Lisa Krieger's experience of the death of her 88 year old father was recounted in a recent issue of "The Soul of Bioethics", which in tern led me to the Bioethics Forum of The Hastings Center.  

I was struck by the many ways in which she said that the need was for information.  As a librarian and as a chaplain, I think this is a need that can be addressed!

"I was so desperate for useful information." 

[On being asked what advice she would give now...]  "This is what I would have done differently: I would have asked for a road map. A plan. Even if it’s just a back-of-the-envelope flow chart. What are we doing, and why?  I would have asked earlier: “Where are we headed, with all this? What’s the view from 30,000 feet up? Let’s say he survives and makes it out these hospital doors. Then what?” 

I wish someone had told me about the range of choices. Not just: “Do You Have a DNR? Treatment or not?” Rather: “We can do everything. Or we can do some things, but not others. Or we can do nothing, but keep him comfortable.” That conversation never happened. 

I think it is possible to have a conversation about options in aggressive treatment and palliative care at the same time-- early on, maybe upon entering the ER, or even when there is the initial dementia diagnosis. Not when things go south in the ICU. Because then you keep waiting for the perfect time to stop. There is no perfect time. 

Why does this happen?  "It happens because people don’t have enough information, and support, to trust their decision."