Tami Boehmer: Hope versus statistics

Guest blogger Tami Boehmer shares a recent conversation with e-Patient Dave about the pitfalls of survival statistics and the power of hope. Tami’s blog, “From Incurable to Incredible,” is at www.miraclesurvivors.com.

I recently had the honor of speaking with Dave deBronkart, widely known as “e-Patient Dave.” Dave is the leading spokesperson for the e-Patient movement — Empowered, Engaged, Equipped, Enabled. A high-tech executive and online community leader for many years, he was diagnosed in 2007 with Stage IV kidney cancer, with median survival 24 weeks. e-Patient Dave is a living testament to the power of taking charge of your own health and being the captain of your medical team. He used the internet in every way possible to partner with his care team; today he is well.

During our conversation, I discussed my frustration with doctors who give death sentences to patients, thus taking away their hope. He agreed that statistics are often misleading and can be detrimental to patients. When Dave was diagnosed, he turned to patient online communities, such as the Association of Cancer Online Resources (ACOR), and learned some valuable information.

“I quickly figured out that my median survival was 24 weeks after diagnosis. My doctors didn’t tell me that; they knew better than to give me a prognosis,” he says. “So I presented to my patient community the figure I found. They steered me to a famous article by a scientist named Stephen J. Gould, called “The Median Isn’t the Message.” Gould described his grim prognosis when he was diagnosed with mesothelioma, and this gloomy prognosis never happened. He laid out why the median is useless.

“Let’s say you’re a researcher in a lab and you’re going to follow a group of 25 people. Out of the 25 patients, when the 13th patient dies that is the median survival time. As soon as the 13th person dies, then they can publish. They don’t give information on the others. You need to use this information in context, and you don’t have to go to medical school to understand this.”

Dave discusses the nuances of doctor-patient communication and the healing power of hope in his wonderful book, Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (And What Healthcare Can Learn From It). Here’s an excerpt:

Jerome Groopman, MD’s excellent book, The Anatomy of Hope: How People Prevail in the Face of Illness, cites evidence from well controlled experiments: when challenged, patients’ bodies perform differently based on their minds’ expectation.

We’re not just talking about their experience of pain — scientists measured substantial difference in their physiological response, comparable in strength to a drug. Dr. Groopman calls hope “a catalyst in the crucible of cure” and concludes, “There is an authentic biology of hope.”

Movingly, he describes decades of being with patients as they faced probable death, and his journey as a physician learning to help them deal with it. Today he writes:

“Hope, unlike optimism, is rooted in unalloyed reality. […] Hope acknowledges the significant obstacles and deep pitfalls along the path. True hope has no room for delusion.”

Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them. For all my patients, hope, true hope, has proved as important as any medication.

I’ll repeat: hope is now science, not speculation. If you don’t believe it, read the book.

He says hope has two components – belief and expectation. I’ll paraphrase it: When you believe there’s no hope, your biology shifts; it’s as if your cells give up, your system gives up; your body doesn’t do as well as it could if it had hope.

Being scientific about the unknown

Science can get arrogant, saying, “If we don’t have evidence for something, don’t believe it.” But there’s another saying: “Absence of evidence is not evidence of absence.” History is full of things that were true long before science figured it out. Consider:

  • Oxygen was oxygen, doing what it does, long before Priestley figured it out in 1774.
  • Bacteria were bacteria, doing what they do, long before scientists proposed the germ theory of medicine in the 1800s. (When bacteria were proposed, science was incredulous: infections were being caused by an invisible evil creature? Why, that’s witchcraft! But it was real. Science just hadn’t figured it out yet.)
  • DNA was DNA, doing what it does, long before Watson and Crick figured it out in the 1950s.

And hope was doing what it does — whatever that is — before the experiments Groopman cites. Perhaps it’s related to how PNI (psychoneuroimmunology) works: Thoughts (psych) measurably affect the nervous system, which measurably affects the immune system.

I was recently criticized for my unwavering opinion that hope is powerful medicine. So there you go; hope is not a four-letter word. There’s science behind it. Just ask e-Patient Dave.

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Posted in: e-patient stories | end of life | general | patient networks | pts as teachers | understanding statistics

 

 

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