Katy Butler is a journalist, essayist, and author of Knocking on Heaven’s Door: The Path to a Better Way of Death. She founded Facebook’s “Slow Medicine” group and is currently writing a practical manual to a good end of life.
You mentioned on social media that you decided not to ask your fiancé to be your health care proxy. Why not?
My fiance, Brian, says he would do what I want, but because of the way he was raised and who he is as a human being, I think he’d find it horrible to make a decision to allow natural death if things could be done to keep me alive. Not choosing him was an act of kindness on my part. Forcing him to make difficult life and death decisions would put him in a wrenching emotional situation at a time when he should just be allowed to be a grieving spouse.
Who is your health care proxy?
My proxy is the poet Jane Hirshfield, a close friend whom I met as a fellow Zen student 30 years ago. I chose her partly because we’ve talked about end-of-life issues for years. She knows my views and my values, but — even more importantly — she’s somebody with a backbone and a great deal of mental clarity. She doesn’t necessarily share all my views, but I feel confident that she would be faithful to what I want.
Why do you think having a “backbone” is so important for a health care proxy?
I’ve been writing, researching, and hearing other people’s end-of-life stories for seven years. I’ve heard about many situations in which a hospital accedes to the wishes of the so-called “nephew from Peoria” who flies in, insists “everything” be done, and starts calling the shots because the hospital is afraid of being sued. Hospitals do not always honor proxy documents, so it’s sometimes necessary for the designated proxy to have a backbone, and stand up for what the patient wants.
Have you given your proxy an idea of what you’d want in different situations?
I’ve been very clear that if I have any kind of dementia, I want comfort care only. For me personally, I do not want to be in a locked ward anywhere. . That may be a radical position for some people, but it’s not for me.
We haven’t discussed every possible scenario, but it’s not really about “a feeding tube in situation X, but not in situation Y.” It’s about understanding my values. What makes my life worth living? What gives me joy? What medical treatments or health conditions would rob me of that joy? What circumstances do I contemplate and think, “I’d rather be dead than in that situation”?
Jane and I don’t agree on everything, and I don’t know if we would always make the same decisions for ourselves or those we love. But I have faith that she will make decisions that reflect what makes life worth living to me, and what forms of suffering are too much for me to bear.
What do you think gets in the way of having meaningful end-of-life conversations?
There’s a cultural taboo against talking about any circumstances in which you would consider your life not worth living. Most people, including me, feel that life is an amazing gift. There are many religious and cultural pressures against admitting that there are situations in which you would rather allow a natural death than fight to stay alive, no matter how much you were suffering That’s one reason it’s a very intimate and vulnerable thing to share with someone.
I also think people find the legalistic language intimidating. They feel it’s over their heads, and scary. I think this is a sacred conversation, a sacred decision, and yet proxies and advance directives are often produced by lawyers in the course of writing a will, I don’t think the full person comes into the room, you know? The documents focus on the primary concerns of hospitals and doctors, which are not necessarily all those that matter to patients and families. You may care as much about having your dog on your bed when you’re dying as you do about whether or not to permit a feeding tube. The dog gets left out. People often feel disempowered when they confront these pieces of legal paper.
What is your advice about choosing a health care proxy?
Some things are practical. For example, is he or she likely to be in town? Is he or she responsible enough to drop everything and go to the hospital? Is this someone who cares about you and understands what you value and is willing to fight for you, if necessary?
A friend of mine says you need someone who has both a backbone and an ability to get along with people. You could be in the hospital for a long time if you’re very seriously ill and nobody knows which way it’s going to go, so you need someone who treats nurses and doctors and aides courteously and appreciatively. You don’t want someone who just goes in like gangbusters and lays down the law. At the same time, your proxy might have to persistently express your wishes and not take no for an answer, so it’s a complex set of skills.
For more information, download “How to Choose a Health Care Proxy & How to Be a Health Care Proxy.”
Note: This conversation was edited for length and clarity.