Let’s Have a Discussion About End-of-Life Care

A recent article in the San Jose Mercury News not only let writer Lisa Krieger share the story of her father’s final days with intrigued readers, but also taught the author some valuable lessons about what she considers “a good death.”

” How could the hospital bill for the final 10 days of this frugal man, with carefully prepared end-of-life instructions, add up to $323,000?”

The original story, entitled “The cost of dying: It’s hard to reject care even as costs soar,” shares the lessons that Krieger learned through the loss of her father, after ten days in the hospital that cost his surviving family over $323,000. Krieger realized that, when it comes to making end-of-life decisions, even when carefully-planned end-of-life care instructions,  “it is easy to get quick access to world-class treatment. It’s much harder to reject it.”

In this article, the author poses the question: “Just because it’s possible to prolong a life, should we?” The original story received such an outpouring of response from readers that Mercury News gathered family members and doctors together to discuss this topic.

Krieger ran a follow-up story two weeks after the original, entitled “Cost of Dying: Lessons Learned,” in which she poses the questions “What’s a good death? And how do we get there?”

“I’m not afraid of death. I didn’t miss myself before I was born, and won’t miss myself once I’m gone. But I’m terrified of pointless suffering. I don’t want to die amid tubes or catheters.” – Lisa Krieger

She suggests that planning for the end-of-life needs to begin much sooner than it typically does – much sooner than many of us are prepared to do it.

“For me, planning should have begun the day my dad got his Alzheimer’s diagnosis, four years before his death,” Krieger says in the article. “Certainly when he broke his hip. By the time we got to the ER, trying to combat an infection in my frail 88-year-old dad, it was far too late.”

All too often, this is the case as people are forced to face end-of-life care decisions for loved ones. Most people prefer to die at home, in familiar surroundings, and with loved ones near. But the majority, instead, spend their last days in a hospital room, surrounded by tubes and charts and doctors, in pain as their bodies are pushed further than they are meant to go.

Healthy and open discussions about the end-of-life long before death approaches can help alleviate so much of this emotional and physical suffering, as well as help families avoid incurring the cost of unnecessary treatments.

In my recent conversations with end-of-life industry experts, this issue came up again and again. Medical professionals are not trained to end lives; they are trained to save and protect them, and their efforts will always be aimed toward those goals. But sometimes knowing how to create a comfortable and positive end-of-life experience is a healthier option than knowing how to extend a life that is wrought with suffering. Avoiding discussions about death and dying because we are afraid or saddened by the thought of losing a loved one causes us to also ignore important conversations that could help us create a positive end-of-life experience for that person.

Krieger’s shared experience and the response from her readers makes it clear that we are reaching a turning point in the conversation about the end-of-life. We are learning the importance of embracing the experience for ourselves and for our loved ones. And, most importantly, as people like Krieger share their stories, we are starting to talk about it.

Here are some of the things Mercury News readers had to say, sharing their own stories in response to Krieger’s (read more at the Special Report page):

• Michelle Barajas: “Society is too afraid to say it out loud.”
• Sailaja Rajappan: “We were the scared ones, not him.”
• Mariann Jones: “In Europe death is inevitable, but in America, death is optional.”
• Kathryn Murphy: “The hard part of companioning a dying person is that he or she is at the same time living.”
• Pamela Gibson: “Often “doing everthing” does not mean prolonging a life, it means prolonging the dying process and the pain and suffering.”

What do you think?