Putting It in Writing
Deciding what to include in a living will is tough, if you take it seriously
Posted Apr 07, 2016
My husband and I drew up our living wills recently -- along with our wills, our power of attorney forms, and our health care proxies. I guess this is just part of Life in the Sixties, the realization that it behooves us to finally get our house in order.
The boilerplate language of the living will that the lawyer showed us was a little bit off-putting. Even though we knew it wasn't legally binding -- a living will is mostly meant as a set of guidelines for the health care proxy, and you're really supposed to have talked things through with them so they know exactly what your wishes are -- we wanted to make sure that it said things that wouldn't some day come back to bite us. I was especially worried that unless I stated clearly that I didn't want to be kept alive if I was too demented to know who I was or how to feed myself, I'd find myself in a situation that I know, from the vantage point of a cognitively competent 62-year-old, I most definitely don't want to be in.
My concern can be traced to a case I wrote about in early 2015, when a demented woman in a nursing home named Margaret Bentley was being spoon-fed by her attendants, possibly against her will but it was hard to know because she was too demented to say. Her daughter and husband were sure, based on things she had said and written when she was younger, that she never would have wanted to go on living with such a profound loss of self. Voluntarilyy Stopping Eating and Drinking (VSED) is a legal way to end your own life when it's become unbearable, even if you don't live in a state where physician-assisted dying is legal -- yet this woman, and other demented people, can't really engage in VSED, because they can hardly remember that it's what they had once wanted to do. If they're hungry and someone sticks a spoonful of food in their mouths, they'll eat.
So I put it in writing in my living will. The stipulations in the will itself would go into effect "if I am permanently unconscious or if I am conscious but have irreversible brain damage and will never regain the ability to make decisions and explicitly express my wishes."
And in the list of "procedures and treatment" I would want withheld in that eventuality, I mention "artificially administered feeding and fluids, including spoon feeding without explicit consent." I hope that this use of "explicit consent" -- twice -- will make it clear that I don't want to go on living if I'm profoundly demented and don't even know my own name or know how to feed myself. Maybe putting it in writing -- and talking to my husband and, should he die first and be unable to stick up for me, my daughters, will help me avoid Margaret Bentley's grim fate.
As I put the new documents into the file marked "wills," I see that I've also kept in there a poem I saw in The New Yorker a long time ago -- possibly as long ago as 25 or 30 years ago, the last time we wrote up our wills. It's by Sharon Olds, and it's called "The Promise." I guess I put it there, in that folder, as a sharp and powerful declaration of what I want my husband and daughters to do when the time comes. Read the whole poem, at this link. It has lines like this:
I tell you you don't
know me if you think I will not