Stephen Schneider - The Patient From Hell

This book is the story of how Stephen Schneider and his wife Terry dealt with his diagnosis of a rare form of cancer. While the title of this book might be a little confronting, it's a book worth reading. Stephen Schneider is a climate change scientist, skilled in scientific method and analysis of uncertainty. He used his scientific experience to challenge and validate the treatment proposed by his doctors. If he hadn't done this, he may not have survived the disease.

The medical profession is one that is held in high esteem and with whom we trust our lives. And it's true that the vast majority are caring, professional individuals who are committed to patient care. But the reality of how medicine is practiced today places limitations and constraints on doctors.

We found this book six months after Peter's stroke. Whilst it was too late to be of use in the critical phase just after the stroke occurred, it provided a number of interesting lessons for us in taking things forward. This is a book that I strongly recommend to the nominated patient advocate and caregiver. It is written in an engaging way, telling the story of his diagnosis, treatment and (so far) recovery.

Stephen Schneider advocates that the patient and/or patient advocate fully understands what is happening in treatment and is fully engaged in determining which treatment options to select. For a cancer patient, treatment is typically ongoing until remission and then monitoring thereafter. For a stroke patient, there is possibly some intervention once diagnosed and then rehab, followed by some preventative medicine or activities. Even so, the lessons described in the book are relevant and interesting. We've made use of them several times.

A key theme is that medical services are geared around an average patient. And whilst this is fine if you fit that definition, the odds are that you aren't the average patient.

As an example, some stroke patients that we've spoken to were put onto an anti-depressant immediately, because "most stroke patients suffer from depression". This might be the case, but if 60% of stroke patients suffer from depression, how do you know if you are one of the 60% or one of the 40%? There are side effects associated with anti-depressants and if you're one of the 40% you might be experiencing these side effects for no good purpose!

Similarly, we were told by more than one healthcare professional that whatever function Peter got back in the first three months after his stroke would be all he would get back! Apart from being blatantly untrue (he has made significant gains in the last few months, a year after the stroke), this acts as a demotivator to the patient. I suspect that the healthcare people in question were trying to lower expectations to avoid disappointment, and were possibly basing this opinion on the fact that once patients come out of a rehab program they may not take the initiative to continue to work on their recovery.

The key message of Stephen Schneider's book (for me) was that the patient, patient advocate and caregiver need to take responsibility for the patient's recovery. The medical staff are the support crew who can offer advice and guidance and assistance. But ultimately, it's not their body or their brain. They have a professional interest in your recovery. But for you, it's personal!