I recommend this book to anyone who lives with chronic illness, or who knows someone living with chronic illness. It’s about the role of uncertainty in chronic illness, about the evolution of knowledge and the difficulty (sometimes) making choices.
The Prince at the Ruined Tower by Michael D. Lockshin, M.D.
‘Uncertainty is just another tool that we can learn to use.’
Dr Michael Lockshin is Director of the Barbara Volcker Center for Women and Rheumatic Disease, Hospital for Special Surgery, and Professor of Medicine and Obstetrics-Gynecology at Weill Cornell Medicine in New York. He is a graduate of Harvard College and Harvard Medical School.
Dr Lockshin is the kind of doctor I wish we had more of.
Because as he points out so eloquently in this book, medicine especially medicine in relation to the management of chronic illness, is often more about ambiguity and uncertainty than unambiguity and certainty. Choices are not always binary. And yet, and perhaps particularly in the USA, the adoption of codes, of exact diagnoses of illness for insurance purposes makes uncertainty difficult to accept and explore.
‘A name is only a simple description, invented by humans, that describes an appearance that may not reflect the core.’
In this book Dr Lockshin writes of the challenges for both physicians and patients where an exact diagnosis cannot be given. We all wish for a degree of certainty in relation to health. Those of us who live with chronic illness learn a measure of flexibility. (I am the third of four generations in my family to have one or more autoimmune diseases. We’ve learned quite a bit about uncertainty.)
Dr Lockshin also writes about change, about the possibility that we may know more, have different options in the future. In my own family I’ve seen how treatment options have evolved for Type One Diabetes. The insulin my grandmother had access to in the 1930s is very different from what is available to my son in 2016. Delivery mechanisms are evolving as well.
The main message I’ve drawn from my first reading of Dr Lockshin’s book is that uncertainty is not the same as incompetence. Not all medical conditions can be easily diagnosed and treated. Sometimes there are paradoxes, sometimes an illness changes, sometimes there are no clear answers. I think that there are political and ethical dimensions to this as well. For example, if insurance requirements drive physicians to identify particular codes to enable patient claims to be paid then this may result in incorrect treatment. It will certainly result in important medical statistics being incomplete and possibly incorrect. And, it seems to me, that if research funding is allocated on the basis of need, on instances of recorded illness then research opportunities may be missed.
But that’s me, musing about the future. In the present, this is a book for both patients and medical professionals. Both need reassurance that uncertainty has a place in medicine.
Note: I was offered, and accepted, a free copy of this book for review purposes. I am glad that I did.