5 questions to ask at the end
In the last few weeks, the deaths of several of my age peers have rather destabilized me.
I looked for and found solace when I discovered five questions we are encouraged to ask as we relate to a family member or friend who is facing life’s end. The impetus behind these questions is surgeon and author Atul Gawande.
Anyone who reads this column regularly knows my high regard for his approaches. Gawande’s belief is that if families, friends and physicians learn to ask specific questions about end-of-life preferences, then really listen to the answers and act accordingly, “care in this country will radically change.” Not just death and dying actions, but care overall.
Gawande says, “We tend to assume that safety and health are paramount, without asking things like, “Are you lonely? What would you like?” Who do you need with you currently?
There’s a poignant, and possibly unsettling, Gawande illustration: If the Alzheimer’s patient wants to eat 40 cookies and you recognize that’s not necessarily good for him, “What if you were to say, “So what! Enjoy. That’s living.”
The fundamental idea is to discover what people want as they approach the end of life — and then follow their lead. It’s about recognizing “people have other priorities than just living longer.” And the bottom line, the only way to know these things is to ask. Research suggests that most of the time, no one does. In fact, questions like the ones that follow are asked less than one-third of the time.
Here is my overview of the questions as I might choose to ask them:
1) What is your understanding of your illness?
2) What are your fears (or worries) about the future?
3) What are your goals? Or, differently asked, what are your priorities right now?
4) What outcomes are unacceptable to you? Or differently stated, what are you willing to sacrifice and not?
5) This question is typically asked last, but I think it might be the most important, maybe in some situations the only one you need to ask, “What would a good day look like to you?”
And, Dr. Gawande reminds us, “You need to ask repeatedly, people change their minds.”
As an article by writer and editor Sue Campbell (published online at www.nextavenue.org/atul-gawandes-5-questions-ask-lifes-end/) reminded me, “Thinking about mortality is anxiety-provoking.” But we must consider opening the door to dialogue.
You don’t have to have the full question/answer conversation the first time you bring it up. But consider starting a discourse. You ask a good question, and the person you’re querying may begin to process things they have not thought about — and want to, need to. They start contemplating possible responses and “later become ready and willing to talk about it.”
Yes, it’s awkward to bring up these things. But what may be even more difficult is if you do not — and later wish you had.
And it’s not just about the last weeks of life, it’s about the last decade. Most of us are going to spend a significant part of life with increasingly more chronic conditions. We will live substantially longer. With that as our aging reality “What’s acceptable to us and those we love and what’s not?” Just ask.
Sharon Johnson is an associate professor emeritus, Oregon State University, and the author of “How Gray in My Valley: Enlightened Observations About Being Old.” Reach her at Sharon@agefriendlyinnovators.org.