The Patient from Hell: How I Worked with My Doctors to Get the Best of Modern Medicine and How You Can Too

by Stephen H. Schneider, Janica Lane

Threatened with a rare and life-threatening cancer, a scientist works with his doctors to make decisions in the face of uncertainty

Genres: Science, Health, Nonfiction

320 pages, Hardcover

First published September 26, 2005

Reviews

[Michael · Rating 4 out of 5]

A highly personable memoir by an esteemed climate scientist diagnosed with a rare cancer, and how he used his knowledge of the scientific process and risk assessment (and, he acknowledges, his relative privilege, wealth, and access to highly skilled professionals) to improve his chances of survival. Sadly Dr. Schneider is no longer with us, but as someone in the international environmental field I enjoyed his reminiscences of hanging out with Paul Erhlich, Tom Lovejoy, and other climate and biodiversity luminaries as much as I found his discussion on how to navigate the healthcare system informative.

[Andrew Griffith · Rating 4 out of 5]

Patient from Hell describes the cancer journey of Stephen Schneider, a climatologist diagnosed with mantle cell lymphoma in 2001, and how he used his scientific framework to engage and challenge his medical team and ensure the best possible treatment. While in many ways, his is an example of how his cancer 'metasticized' his brain (and that of his wife), it also provides some general pointers on how and when to engage with your medical team (and arguably, a counter example of when not too!).

Part of what makes it interesting is his focus on uncertainty, drawn from climate science, and how to make better decisions given this uncertainty, where to err on the side of caution (Type I error or precautionary principle) or not (Type II error, or of omission). Some of the more practical suggestions are:
- have an advocate
- understand and make clear that it is the patient who should decide on treatment choices and different risks (doctor recommends)
- persevere in asking questions
- you're still alive, so do something
- use common sense
- just say yes to pain medication

One of my favourite quotes is actually by his psychiatrist, following his auto stem cell transplant when Schneider was feeling depressed:

"Look, Steve, the average person with cancer throws himself at the mercy of his doctors, his God, or at least just feels overwhelmingly sorry for himself. Most people don't let their left brains take over and manage their treatment or spend their time researching their disease on the Web, following every detail of their treatment process, suggesting changes to protocols, and doing mental models of their reingraft. They also don't have a biologist wife who spends hours a day on the Web - catching all the latest reports on their disease so that they can review them together and discuss what to present to their doctors and how. You haven't let yourself fell your disease yet. Finally, you're at a point where your body knows there's nothing more your mind can do. Just let it happen. Let the emotion flow. Let the anger and the hurt and the 'How could this happen to me?' come out now. It should've six months ago, but you didn't let it because you were working overtime to make sure you were properly taken care of. There's nothing you have to do now, so just let them come over you ..."

Not for everybody but very readable, and particularly still relevant for those with mantle cell lymphoma - even if much of the protocols have changed since them (incorporating some of the lessons of Schneider's treatment). A better more general choice is Groopman's How Doctor's Think.

[Bluegirla.h · Rating 4 out of 5]

I found this book very interesting, follow Stephen schneider on his journey following his diagnosis of cancer. I like the fact that he showed some parts of his normal working job with climate change and teaching his students. but i also liked the fact that he questioned and worked with the doctor and nurses that were there when he was being treated,but also suggested other ways to do stuff that in the future may help others that also have this condition.
the only thing is many people may not have the resources or be able to do half the things that he did.
overall it was cool the way he handled everything.

[Maureen · Rating 5 out of 5]

I loved this book so much that I renewed it at the library and reread it immediately. Stephen Schneider, a climate scientist, had the education, motivation, energy and perseverance to question every doctor's decision in his fight against lymphoma. His main thrust is that each of us either has the ability to do what he did or the opportunity to find an advocate to assist us to do so.
I am not sure that the average person with no scientific knowledge would know where to start, but that doesn't mean we can't try. An inspiring book, with lots of useful information for the medical nuts.

[Lynda · Rating 1 out of 5]

This book is about a very specific lymphoma. In some instances this author didn't work with his Dr.'s; he was more interested in finding ways to go around the system to individualize his treatment in a way that HE wanted. Many of the Web sites referenced are out of date or no longer available. It was published in 2005 so it's relevancy has diminished. Written by a Stanford professor - he had access for cancer care that the average person wouldn't have. My recommendation: Don't read it.

[Gail · Rating 5 out of 5]

Very educational- ESP useful for anyone working as a patient advocate on a personal basis. It is amazing the author could navigate his health care with the physical and emotional effects he had to cope with
More perspectives on improving health care can benefit all .

[Noah · Rating 2 out of 5]

Some bits of this book are interesting, but realistically it's only worth reading if you or someone close to you is actually going through the same thing.