This is the first in a series of short interviews on end-of-life care that I’m doing for Spirituality & Health. This week I’m speaking with journalist Katy Butler, who has written for publications such as The New Yorker, The New York Times, Vogue, and The Washington Post. In 2010 she wrote an award-winning article about her father’s death in The New York Times Magazine, which became the basis of her first book, Knocking on Heaven's Door: The Path to a Better Way of Death. —Sam Mowe
You've said that “we want death to be a sacred occasion.” What do you mean?
Dying is a renunciation. Willingly or not, it forces us to face that things are as they are and our efforts to change them are done. One way or another, we let go of our clinging, our craving, our unrequited loves, our unfulfilled dreams. It's a spiritual surrender as well as a physical ordeal. Bringing sacredness into this profound experience of human powerlessness leaves family survivors with memories of beauty and not just horror. Rituals remind us that others have taken this journey before, and we are not alone.
How has medical technology made it more difficult to experience death as a sacred occasion?
Technology promises that death can be indefinitely postponed and often succeeds. But when the law of diminishing returns kicks in, we suffer more and more for less and less quality of remaining life. If you die in an ICU, you can't speak because you have a tube down your throat. The people you love are not in charge. You may not be able to have music, photographs, pets, or flowers. That makes it hard to address the emotional tasks of the end of life: "I love you, please forgive me, I forgive you, thank you, and goodbye."
As an individual, what can I do to help ensure that my death is a sacred occasion?
Practice renunciation sooner rather than later. Be willing to die too soon rather than too late. Imagine your ideal death: music, friends, photos, flowers. Who do you need to apologize to or forgive? What makes your life worth living, and what medical care would you refuse if those things were stripped away? Then write an advance directive and go far beyond that legalistic document to define what really matters to you.
What policy recommendations would you suggest for how we approach end-of-life care?
About three-quarters of us say we want to die at home, but only a quarter do. We can change that. Triple hospice funding and improve oversight. Pay doctors to make house calls for the "gray zone" between active living and active dying. Normalize dying. Keep the gravely ill out of the ER and ICU by creating an 811 number—a flying squad of palliative care docs and nurses—as an alternative to 911. Reduce perverse incentives such as excessive insurance reimbursements for futile, torturous end of life treatment. Teach doctors to say honestly and humanely, "you are approaching the end of your life," and pay them well for the time these difficult conversations take. Stop calling the cancer experience a "war" or a "battle." Most will lose it. Try "journey" instead.
What would you like people to say about you after you die?
That I brought more beauty into this beautiful earth and helped reduce unnecessary suffering at the end of life. That, in the words of Raymond Carver, I got what I came for, even so: to call myself beloved on this earth.
Sam Mowe is a writer living in Brooklyn, New York.