{"id":10284,"date":"2011-09-12T12:35:17","date_gmt":"2011-09-12T16:35:17","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=10284"},"modified":"2011-09-12T12:35:17","modified_gmt":"2011-09-12T16:35:17","slug":"tami-boehmer-hope-versus-statistics","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2011\/09\/tami-boehmer-hope-versus-statistics.html","title":{"rendered":"Tami Boehmer: Hope versus statistics"},"content":{"rendered":"

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.<\/em><\/p>\n

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.<\/p>\n

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)<\/a>, and learned some valuable information.<\/p>\n

“I quickly figured out that my median survival was 24 weeks after diagnosis. My doctors didn\u2019t 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.”<\/a> 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.<\/p>\n

“Let\u2019s say you\u2019re a researcher in a lab and you\u2019re 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\u2019t give information on the others. You need to use this information in context, and you don\u2019t have to go to medical school to understand this.”<\/p>\n

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)<\/em>. Here’s an excerpt:<\/p>\n

Jerome Groopman, MD\u2019s excellent book, The Anatomy of Hope: How People Prevail in the Face of Illness<\/em>, cites evidence from well controlled experiments: when challenged, patients\u2019 bodies perform differently based on their minds\u2019 expectation.<\/p>\n

We\u2019re 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 \u201ca catalyst in the crucible of cure\u201d and concludes, \u201cThere is an authentic biology of hope.\u201d<\/p>\n

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:<\/p>\n

“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.”<\/p>\n

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.<\/p>\n

I\u2019ll repeat: hope is now science, not speculation. If you don\u2019t believe it, read the book.<\/p>\n

He says hope has two components \u2013 belief and expectation. I\u2019ll paraphrase it: When you believe there\u2019s no hope, your biology shifts; it\u2019s as if your cells give up, your system gives up; your body doesn\u2019t do as well as it could if it had hope.<\/p>\n

Being scientific about the unknown<\/strong><\/p>\n

Science can get arrogant, saying, \u201cIf we don\u2019t have evidence for something, don\u2019t believe it.\u201d But there\u2019s another saying: \u201cAbsence of evidence is not evidence of absence.\u201d History is full of things that were true long before science figured it out. Consider:<\/p>\n