The Patient From Hell

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

A friend e-mailed, asking me what I thought of the book, because she didn't like it much.

I haven't read it yet, although I've heard of it, so I'm wondering:

Have you read this book, and, if so, what did you think of it?

Please add a comment below.

I'll be reading it myself, once I get through the stack of books on my coffee table, which include: "Face Food," "The Seattle Bungalow," "Vegetable Soups," and "A Lifetime of Secrets."

Buy the book:

The Patient From Hell

Comments

[Anna Schleelein]

Jeanne -

A friend ordered this for me after an incident where a male medical student (who was a friend of a friend of mine) came in to the exam room without asking permission during one of my ultrasounds and the radiologist didn't understand why I was annoyed. I haven't taken a crack at it yet since I am in the middle of law school finals, but I will let you know when I've had a chance to read it. It looks like at least an entertaining version of what we all know already, sometimes you have to demand the best care to receive it.

So far on my list of demands: 1. no more comments to the effect of "you're so young," 2. I am about to graduate with a J.D., do not hand me uninformative pamphlets covered in flowers written at a 5th grade reading level, 3. I am the same age as med students - don't send them to talk to me if I know more about my disease than they do. So far my surgeon has nailed down all three no problem, but the radiologist leaves something to be desired.

[jeanne]

Anna--good for you! And thanks for telling me that the "You're so young!" comment bothers you, because I have to admit that I often think that, although I don't think I usually say it. And I know cancer can hit at any age. I once interviewed a child (and her mom) who had been diagnosed with leukemia at about one year of age--she was 5 when I interviewed her.

One criticism I've heard of this book is that this guy is a doctor, and male, and has power, so of course he was successful in getting the best treatment--so the real question is, will his advice work for the rest of us.

I have to read it first before I can comment, obviously.

Good luck with those law school finals.

[jeanne]

Anna e-mailed me this critique of the book:

I just finished reading the book The Patient From Hell. It wasn’t great, but it wasn’t horrible. I found some of his suggestions useful.

He had a very, very unusual disease, but I did enjoy reading about how he got his doctors to modify protocols, etc. I’m a pretty atypical patient so I do that a lot myself. Part of the book was very specific to his disease which was sometimes frustrating.

More generally, I was disappointed with the cursory way in which he addressed things like costs and getting the insurance company to cover therapies outside the standard protocols. He got into that somewhat, but not in a way that really captured that he would almost definitely be dead or bankrupt today if he didn’t have good insurance at the time.

Cost is a HUGE factor in quality of life issues for cancer patients and you don’t get that at all from his book. He has a PhD and studies climate change. I think having a advanced science degree probably made his doctors take his suggestions more seriously, but he still had to be his own advocate. He had his wife who is also a PhD was with him the entire time too.

He certainly expresses sincere gratitude for all of her support throughout, but I’m sure that helped him get better care. Certainly two people both being able to take that much time away from work is not a typical cancer experience.

The book talked about how he handled getting his doctors to really give him as much information as possible, no matter how bad, which I liked. I know doctors are in a difficult position with adjusting delivery of information for comprehension.

I’ve fired oncologists simply because they talked to me like an 8th grader which drives me crazy, or because they have said things like “you shouldn’t be worried about that,” with no explanation of why I shouldn’t worry or how the hell to meaningfully assess how much to worry.

The book is a much longer and less practical version of the big ideas behind your blog: being assertive gets you better care. I find your blog tends to have very pragmatic suggestions (e.g. review your bill because 80% of them contain mistakes, or ask your doctor about e-mailing information so you won’t forget), but this book sort of misses the mark in that department.

There is a lot of focus on this process called “Bayesian updating” but as far as I can tell it’s basically don’t keep doing the same thing if it doesn’t work just because that’s the conventional therapy, and he does a lot of cost/benefit type analysis in making decisions.

Overall, not a horrible read but I didn’t think it provided any brilliant insights that a reasonably well-informed consumer doesn’t already know.