I didn’t want to be an expert on death and dying. I only set out to be a writer. I wanted to write a book that people would think about. And talk about. A socially relevant message.
But now it’s me who’s talking about it. A lot.
I guess I didn’t realize that’s what publicity is all about. I thought I could just talk about writing it.
But people want to talk about It.
Going all the way back to the beginning, when I told people what I was writing about, they wanted to talk. In fact, at first people just wanted me to listen and not say much. These were friends and neighbors wanting to tell their stories. Stories of love and grief and loyalty and sadness. I listened. It helped. I like helping people.
Those conversations, while difficult for the speakers, were encouraging as I wrote Finding Frances. They told me I was on the right track, that death and dying and medical technology were important subjects for our “Never say ‘dying’” culture. Maybe people would want to read my book after all.
Once the book came out, I listened to more stories. At this point people were relating to certain scenes in the book, certain dilemmas my fictional family faced. I didn’t have to talk back. My writing was enough. My story didn’t belong to me anymore. It belonged to the readers, and I was encouraged that they held it close to their hearts.
But then the publicity started. Interviewers started asking me questions.
Why is this topic important?
What can people do to make their parents’ passing easier?
How did my family feel about my book?
Is Frances typical or atypical of her generation? Of our culture?
For these answers, the book wasn’t enough. I’d gathered a lot of research before I’d started writing, although those facts and figures don’t appear in my book. Yet I find myself quoting them over and over as I talk to larger audiences, sounding like—an expert.
The fact is that a 2008 New England Journal of Medicine report said that only 16% of doctors tell their patients when they’re terminal, even if the patient asks for that information. Instead, doctors offer hope in the form of more treatment. The fact is that over 80% of terminally ill patients in a Dartmouth Atlas Project study did not want to be in the hospital or intensive care while they were dying. Yet most of them were. The fact is that almost 50% of intensive care patients were never asked their preferences on life-sustaining treatment even after 48 hours in the hospital. The fact is that most patients receiving comfort (palliative) care in hospice do so for less than 2 weeks before dying despite the findings that a group of terminally ill lung cancer patients receiving comfort care lived almost 3 months longer than their counterparts who received aggressive treatment only. The facts go on and on.
So despite my best efforts to be only passively involved in the reality of the subject matter, I am, more frequently, finding myself a spokesperson for more compassionate, more patient-centered care for the most ill. Maybe I’m just talking to people who agree with me, but there seems to be a lot of consensus on that one.
I started the book because my mother asked me to. She was in a hospital bed, dying, and I was standing on her left side, stroking her hair. She knew her struggle to die peacefully was important because it had been so difficult to negotiate.
I finished the book and published it because I found by talking to other people that she was right.
And why am I on radio, on television and on the internet talking about Death with a capital “D?” Sure, I want people to read my book. I’d love to sell every last one that was printed. But more than that, I believe in the message. The facts of the situation—what people really seem to want at the time of their deaths—are so far removed from the way we practice and experience medical care. And that keeps surprising me.
People talk to me about dying and I listen. People ask me my opinion, and I tell them. Whether you decide to read Finding Frances or not, I think more of us need to engage the conversation.