It took months for Lisa Krieger to decide to write about her father’s death and minutes for readers to begin responding after her article appeared in the San Jose Mercury News.
At the center of Krieger’s unflinching account of her father’s last days is an uncomfortable question: “Just because it’s possible to prolong a life, should we?”
Hundreds of readers wrote in to thank Krieger for sharing her story and going beyond the “death panel” rhetoric that so often stifles honest discussion of end-of-life concerns.
“It was as if people just wanted permission to talk about dying. I opened the door,” Krieger told Daniel Callahan, co-founder of the Hastings Center, who called for an interview after her article appeared.
Krieger has since written a follow-up article detailing lessons learned from her experience and she plans to write many more.
Her work demonstrates that reporters can sometimes tell the story from an unusual perspective – their own – and touch readers in a different way than would be possible with more traditional coverage.
By Lisa Krieger
Sitting by the bedside of a dying parent is wrenching. This is the person who gave you life – who are you to consider how his life might end? But that’s your job. You’re making life-and-death decisions on behalf of someone you adore and who needs your help. Your parents have taught you basic life values. Suddenly it’s up to you to use them. They’re no longer there to guide you. It’s all up to you.
In the crisis of the moment, you’re dealing with incomplete information. The intensive care unit is very dehumanizing. You’re scared.
You don’t know if you’re doing the right thing. In my case, there was no one else to consult. So it was pretty lonely. We’re a small family, and I didn’t want to impose on my daughter. (I’m an only child, and my mom had died of a sudden heart attack years earlier. Dad’s only brother was long gone; mom had no siblings.)
Why did I decide to write about it? I didn’t, at first. But the second-guessing was haunting me. So I decided to get dad’s medical records. I wanted to review each day’s decisions. I also wanted to compare his chart to my daily personal journal, to see how closely my perception matched reality – to see if I had accurately assessed the situation.
Meanwhile, medical bills were arriving. They were stunning. They were paid by Medicare but the charges were still pretty unbelievable.
Then it hit me: For all the heartache and expense, what did we get for our money? Was it worth it? And, of course, the answer was no.
It rattled around in my head for months. It just kept nagging at me. And I wondered: How did I, a well-educated journalist, find myself in this situation? I’ve got a biology degree from Duke. To earn money during college, I worked in the pathology department of Duke Hospital, and saw several autopsies. I worked for American Medical Association for three years, and then covered AIDS at the San Francisco Examiner and the Human Genome Project and other medical news at the Mercury News.
I know my way around medicine and doctors – and still I got broadsided.
Writing became a sort of therapy. I needed to do my own analysis – a post-mortem, if you will – to get the confusion out of my head and onto paper.
I had major reservations about publishing something, mostly because dad wasn’t there to consent. It was his death, not mine. It was his deeply personal experience, and it wasn’t my right to rob him of that.
But I eventually realized that it was my experience, too. And there was a way to write it that could assert his respect and dignity, describing him in an honorable way and only detailing the clinical experiences that mattered.
I wondered whether anyone would be particularly interested in a story that ended so predictably. Dad dies at the end, and you know that from the first paragraph. There wasn’t a lot of suspense there.
So my goal was to craft it in a way that my emotional/intellectual conflict became the driving narrative. I trusted that readers would accompany me on that journey.
After proposing a story to my editor, he gave me a day or two to just noodle around with the idea and see whether it was worth a try. That was great because it eased the pressure and let me explore the possibilities.
It was a tough piece to structure, because I needed to integrate three things: my personal perceptions, his clinical decline and the costs of his care. Plus some background health care policy stuff.
I didn’t want to be emotionally whipsawed going back and forth between those layers and writing chronologically. I just couldn’t do it. It was too exhausting and still hurt too much.
So I divided it up. In one sitting, I wrote all the awful personal stuff first, quickly, reliving the experience straight out of my notes – describing what it feels like to watch a beloved parent die, and feeling so helpless. Then, in second and third sittings, I could emotionally detach and insert the other pieces.
It was like putting a puzzle together: an intellectual exercise that was very rewarding. And it’s easier to write first and edit later because by then you’ve got some distance.
It has helped enormously with my healing. That’s because I learned by going through his medical records that I had done the right thing. Even though none of the doctors were explicit, I had accurately gauged the gravity of the illness and the tough road ahead.
What would I have done differently? I wish I had demanded access to all of his medical records, all of the doctors’ notes after each test, scan and exam. Doctors aren’t great bedside communicators but those records, they tell everything. They have to, that’s their job. At the time, it didn’t even occur to me to ask.
Also, I would have asked for an ethics consult, so I wasn’t so isolated.
I didn’t call the hospital for comment until I finished writing, because I didn’t want their input to alter my memory of what happened. I didn’t want any defensiveness or PR hokum – “We work closely with our families…” – to color my stark reality. Which was: While they provided great clinical care, they failed to talk about the goals of treatment. There were no insights from 30,000 feet up. There was no one to answer the tough questions: Where are we going here? Is it worth it?
Initially, the hospital seemed to panic. They didn’t know what I was writing, and assumed it would be critical. They issued some very unhelpful PR-related statements. Then, to their credit, they finally provided the hospital’s top doctor, the chief medical officer. He was thoughtful, caring, eloquent, and apologetic. He told me that doctors tend to be overoptimistic about a patient’s chances for a meaningful recovery. And he admitted they could have done a better job.
The response has been huge. There’s solace in that. So many people have had similarly wrenching experiences. Many of us – even 10, 20 or 30 years later – are walking around with the same doubts, wondering did I do enough? Or did I do too much?
So we followed up with a “Lessons Learned” piece, summarizing the wisdom of the commons. Readers seemed grateful for that, as well.
Personally, I’ve learned to not fear death. But I don’t want to suffer. So this experience compelled me to draw up my own advance directives and communicate what I want, so my loved ones don’t need to guess. A friend said his family doesn’t have DNR (Do Not Resuscitate) orders – they have DNC (Do Not Communicate) orders. It’s funny. But you don’t want that to become your reality.
The Mercury News hopes to continue to explore end-of-life issues, because there seems to be so much hunger to learn more. Death is a universal experience. Maybe we’ll do something about advance directives, or dying at home, or how hospitals do their inscrutable billing. Maybe we’ll use the Dartmouth Atlas to explore regional differences in how people spend their last six months.
My greatest reward is that now I can put to rest the awful uncertainty over dad’s last 10 days. Yes, if I knew what I know now, I could have done a better job. When I rushed him to the emergency room, I might have asked for ‘comfort care’ only. But it was human to want a diagnosis for an unexplained fever. I did the best I could, at the time.
I think my dad would be honored to think his experience has helped others.
Now I can focus on much happier times, the other 99.9 percent of his rich and rewarding life. That’s the way he’d want it.
Lisa M. Krieger is Science and Medicine Reporter for The San Jose Mercury News and Bay Area News Group, covering news from Stanford University, the University of California and other Bay Area research facilities. Prior to joining The San Jose Mercury News in 1998, she was the medical writer for The San Francisco Examiner, where for 12 years she wrote about the AIDS epidemic and other public health issues. An award-winning journalist and former National Association of Science Writers fellow at Duke University School of Medicine, she co-authored the book Incredible Voyage: Exploring the Human Body, published by National Geographic Press, numerous magazine articles for general readers, and edited the University of California Press Book AIDS: A Community Response.
