Author: Chris Feudtner, Review by: Scott Strumello
Hardcover: 312 pages; Dimensions (in inches): 1.00 x 9.56 x 6.40
Publisher: University of North Carolina Press; (May 26, 2003)
Well, I've had this book review included among my draft postings for a while, and its probably time to post it. I have read this book, and have a slightly different perspective than the target audience, namely medical professionals, but I also share some of their observations. Read on for my complete review!
Although Bittersweet: Diabetes, Insulin, and the Transformation of Illness was first published in May 2003, it has not really hit the radar screens of many patients with diabetes as say, Michael Bliss' The Discovery of Insulin did. That is unfortunate, because Bittersweet provides a useful perspective that is not seen in so many of what I consider to be a "sickeningly sweet" context for many diabetes publications today (self-help books frequently written by people who tell us that we can successfully control diabetes, all it takes is a positive attitude -– despite the fact that few of these books are written by people who have any clue what its actually like to live with diabetes 24/7/365 themselves). Bittersweet is more of a history lesson, but an important one which addresses not only diabetes, but the impact of medical care on health over time. The author, Chris Feudtner, uses the term "Bittersweet" to describe medicine not as a history of consistent and steady progress as it is often viewed, but frequently a compromise between the lesser of two lousy choices. In many cases, treatment falls short of the ultimate goal of actually making people better. This is true for not only diabetes, but for many other conditions, ranging from asthma to AIDS.
To be sure, Bittersweet is not the kind of reading I would recommend doing before going to sleep. It is rather dry reading and takes a while to get into reading it, but the perspective provided makes it worthwhile. Feudtner examines the history of insulin therapy, and describes what he calls the transformation of illness. The idea is simple enough, although as The New England Journal of Medicine reviewer originally said, "It has not been stated so clearly and compellingly before now". New therapeutic techniques often do not conquer or eradicate diseases but, instead, transform them, and sometimes in ways that physicians cannot imagine.
Feudtner builds on a detailed examination of the clinical records and correspondence from the clinic of the famous Boston physician Elliott Joslin to chart the effects of insulin therapy on the patients and physicians who actually pioneered it. The records that Feudtner studied contained the extensive correspondence of Joslin's original patients, who reported their successes and challenges in using insulin. The treatment of diabetes allowed patients to be involved in the day-to-day management of a disease in a way that was unprecedented. Feudtner carefully sorted through the documents of a first generation of patients who entered this regimen of regular injections, monitoring, and dose adjustments. He also notes that what we find in these letters are not private reflections on illness by its sufferers, but by people who were writing to their doctor. One especially poignant example was from a patient named Guy Rainsford, who kept up a decades-long correspondence with Joslin and illustrated his medical concerns in part through a series of penciled cartoons. Rainsford's sketches featured himself as the quirky and irascible protagonist of an ongoing struggle against his ailing body, armed with, or beset by, a sometimes-bewildering array of syringes, retorts, chemicals, and charts in an effort to try and manage his blood glucose levels.
Indeed, insulin transformed the illnesses and the lives of the patients who came under its influence. Early proponents of insulin treatment, like Joslin, realized they were at the cusp of a new era. The sections of the book about the treatment of childhood diabetes before 1922 were very informative, and make patients realize that although current treatment is far short of a cure, it's still better than what became of patients before insulin's discovery, but the overall lesson is that the medical profession has not been a history of ongoing success as they would like us to believe. Interestingly, even the earliest insulin users expressed similar complaints about the ability to comply with the relentless rigors of medical advice that arose in the form of dietary restrictions, guidance and treatment and frustration with their inability to truly control their condition. The introduction of insulin in 1922 transformed the acute, rapidly fatal course of a type 1 diabetic coma into a chronic illness that was instead monitored and managed over the years. But the limitations of insulin treatment were painfully evident even in Joslin's day. Insulin treatment often stopped cold the ravages of ketoacidosis but created in its wake a host of late complications in the vessels of the retina, brain, heart, and kidneys of patients with diabetes.
Even today, in spite of improvements in the management of diabetes, sometimes even the most motivated and compliant patients still suffer complications, showing us that the idea of "control" is really a misnomer. "Manage" is probably a more appropriate term because physicians and patients do not have absolute control over all metabolic variables, and therefore our ability to actually control the condition remains limited. More recently, the DCCT showed that although intensified glucose management dramatically reduced the likelihood of complications, it still failed to completely eliminate diabetes complications (indeed, something like 60% of the intensive treatment group actually suffered from some form of complication, although some proponents argue this is because they did not intensively manage the condition from diagnosis). In addition, the intensified treatment therapy brought with it a statistically significant increase in the incidence of severe hypoglycemia, and although more accurate dosing and delivery via insulin pumps and better insulin analogs have improved insulin therapy slightly, the reality is that a patient with type 1 diabetes today still faces many of the same challenges as patients in the early 1920's did. Although refined control may further reduce the likelihood of complications, or at least reduce the severity of them, even that is unlikely to ever completely eliminate diabetes complications. As The New England Journal of Medicine reviewer noted, what changed most was the expectation of success.
Interestingly, in March 1999, another famous Canadian diabetes researcher, Dr. James Shapiro and his team again raised the expectation that an actual cure for diabetes was no longer a completely unrealistic expectation. But the lesson we must draw from Bittersweet is that although our expectations for success have grown, the medical profession's track record of success is decidedly more limited. As a result, our expectations for a cure will probably need to be moderated as well. Frequently, I hear people with diabetes who claim they expect a cure without immunosuppressants. But as Bittersweet serves to remind us, medical history is filled with stories of transformed illnesses, and type 1 diabetes is perhaps the most well-documented example. The result may be a "cure" that includes immunosuppressants, but perhaps fewer and less toxic ones are a more realistic expectation. As both a historian and a pediatrician, Feudtner is sensitive to the ironies implicit in insulin therapy. As The New England Journal of Medicine reviewer originally noted in his review of this book, "The transformation of disease, as exemplified by the case of diabetes, is a valuable and elegant concept that serves to remind us that the tally sheet for medical science must carry a column for debit as well as credit." Bittersweet serves as a valuable history lesson and in spite of advancements in treatment, patients with type 1 diabetes today will probably find a lot more in common with the earliest users of insulin than they might expect.
Tuesday, March 20, 2007
Author: Chris Feudtner, Review by: Scott Strumello