Review by: Elaine Adler
Cell 2 Soul. 2006 Summer; 2(2):a18
De Capo Lifelong Books (2005); 300 pages; ISBN: 0738210250
When scientist Stephen Schneider discovered a lump on his arm, he had little time in his schedule to deal with it. He left for Geneva, Switzerland to participate in an international conference on global warming, deciding to watch the lump's progress.
As a Professor of Biological Science and Codirector of the Center for Environmental Science and Policy at Stanford University, he felt he was doing important work and didn't look forward to any obstacle that would interfere with it. A former MacArthur Prize Fellowship recipient, member of the National Academy of Sciences, respected writer on climate change and the environment, everything had always seemed to go his way.
The climate research and discussions in which Schneider, his wife Terry Root, and his colleagues are engaged are based on scientific and economic principles. The analytical tools and reasoning methods that are ingrained in his natural thought process would hold him in good stead when applied to his personal treatment program for the rare cancer, mantle cell lymphoma, with which he was ultimately diagnosed.
He and his wife researched potential progression of symptoms; did data analysis of the success, benefits, and costs of accepted tests and treatments; tracked down clinical trials researching new approaches; applied subjective probability analysis (Bayesian updating) based on knowledge, experience, and intuition when conclusive hard data is lacking; examined historical data to calculate risk, from mild to catastrophic (risk = probability + consequence); and repeatedly determined whether to push for a Type I risk, where one spends the money and acts to prevent a bad outcome despite lack of surety of the symptom, or whether to accept a Type II risk, where one saves the money and doesn't act, accepting that the consequences may be disastrous after all. (Schneider suggests that our government is taking a Type II risk with respect to global warming.)
His understanding of the balance between scientific data and economic realities helped him see that doctors' hands are often tied by the bureaucracy of hospital administrations. Administrators often force doctors to recommend a less complete and less expensive test than one that would yield more conclusive results. They discourage doctors from providing an expensive drug as a preventative measure until symptoms are severe. Schneider feels these policies may be more costly in the long run if one considers social benefits and human productivity in the equation. When it came to his own illness and life, he found himself using every reasoning and persuasion tool at his disposal to gain his doctors' respect and to advocate for the best possible outcome, even when it went against hospital policy.
Early in his cancer research, Schneider found an essay by noted Harvard paleontologist Stephen Jay Gould, who realized that he didn't need to be an "average" statistic when diagnosed with potentially deadly abdominal mesothelioma. In The Median Isn't the Message, Gould demonstrates that, in order to create an average, there must be both higher and lower numbers. Why, he reasoned, should he consider himself average when he may be an "outlier" and beat the odds with individualized treatment? Schneider felt the same way.
By definition, "by the book" treatments may not be the best course for "outliers." Nevertheless, physicians often use average statistics to determine a traditional course of action, even when individualizing for each unique patient and going outside the box may produce better results.
His actions following his first chemo treatment provide an excellent example of how Schneider applied outlier thinking and Bayesian analysis. When the oncology doctor handed him an order for a blood test in eleven days, Schneider asked why. He was told that the test was designed to find his nadir, the low-point in his white blood cell count, the healthy cells that would be killed by the chemo along with the cancer cells. If the count fell below 500, special precautions would be required because the immune system would be highly compromised. The test was scheduled for day eleven because that is when "most" patients reach their nadir.
Schneider immediately thought of Bayesian analysis, which requires that three data points be taken for accurate results, a principle being ignored here. If he were an outlier, wouldn't it be reasonable to assume that he might reach his nadir before or after the average patient? If he reached it before, his system would be compromised while waiting for the recommended test, and he wouldn't be taking necessary precautions. If he reached it after, precautions would never be taken at all, placing him at risk. A lot was at stake if his immune system were compromised without being aware of it. So he took matters into his own hands. He approached a nurse and told her he had been asked to schedule a blood test on what would be day eight, and she made the appointment. He asked who else had the authority to schedule tests, and was told his doctor's nurse practitioner could. A few days later, he called her to schedule a third blood test on day fourteen.
With three data points in the offing, Schneider felt more comfortable. The results of the first test showed his count to be 2,100, low but not placing him at risk. The second, the one that would have been his only test had he abided by the rules, yielded a count of 600, low enough to be warned to avoid being around sick people, yet not so low as to be at risk of serious infection. After the third blood test, he was called at his office to be warned that his number was near 500, that he was in grave danger of serious infection, and that he should avoid being out of the house or around people and animals for five days. In addition, the oncologist began administering Neupogen after each chemo treatment, a drug they used to stimulate white count production only when a count of 500 is reached — one of the many examples of Type II risk that saves money unless they know it is absolutely necessary. Without that third test, he wouldn't have been given this white cell boost that he felt helped him through the chemotherapy.
Schneider is adept at presenting technical information in a way that makes it easy to understand. His proactive intervention in scheduling his blood tests was only the beginning of how he applied data analysis and reasoning to every test and treatment proposed by his doctors. He questioned everything, and his wife was always by his side taking notes for future reference. Based on their research, he often made suggestions for extended tests or for different approaches. Once his doctors understood his cogent reasoning, they accepted him as a member of the team. They became open to his suggestions and often learned from them. As a result of his research, Stanford purchased a stem cell cleansing machine that greatly reduces the chances of reinjecting cancerous cells into the system, benefiting future patients undergoing stem cell transplants.
He admits up front that his book is not for everyone. His approach may seem daunting to anyone not involved in research methodology. Yet, anyone who reads his message cannot help but see the benefits of understanding everything possible about a diagnosed disease and its treatment, to be proactive and take responsibility for what is happening, to advocate for whatever it takes to get well. For those too weak or unable to cope with the technical aspects, Schneider urges appointing an advocate who is up to the task. He suggests that retired physicians might be the perfect match, particularly if they learn to add Bayesian analysis to their knowledge of medicine.
The Patient from Hell is well written, interesting, and informative. There are invaluable suggestions throughout that every patient or advocate should keep in mind. Things like keeping track of medications, being vigilant about the possibility of human error, and coordinating prescriptions and recommendations from different doctors who may act independently rather than integrating their approach with others on the team.
Schneider stresses the importance of staying engaged in life and remaining as active as possible. While on chemo, he continued to take walks with friends, despite painful neuropathy in his feet. During his confinement in a clean room in the bone marrow unit of the hospital, the staff was amazed that he spent hours each day emailing students and colleagues, and spending time with a few good friends who came to visit on a regular basis. His wife stayed with him from 9 a.m. until 11 p.m. every day, devising projects such as putting photographs in albums to help keep him occupied.
While Stephen Schneider's left-brained, research-based, analytic approach to his treatment and healing is in direct contrast to Julia Fox Garrison's right-brained intuitive, feeling approach in her book, Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry, it is interesting to note that both displayed an upbeat, positive, can-do approach to their healing process. Both acknowledged that they had a fight ahead of them and chose to meet it head on. Both were eager to get better so they could resume their lives. Both had devoted family and friends as support systems. There is much to be learned from both the differences and the similarities in their approaches.
After reading both books, one might say that Garrison was the more likely candidate to be labeled the "patient from hell" by her doctors (they seemed to label her everything else, so why not this one?). They didn't know what to do with her feistiness and off-beat sense of humor, the tools she used to fight their authoritarian, insensitive approaches. Rather than trying to understand her needs and personal style, they considered her an anathema.
On the other hand, Schneider was able to speak the same language as his physicians, approaching them on their level and successfully convincing them to change protocol in some instances. He respected their busy schedules and picked his battles prudently. While some physicians may still prefer compliant, submissive patients, it is clear that Schneider's respected his knowledge and learned something in the process.
The Patient from Hell is an empowering and fascinating read for anyone involved as a patient, advocate, or caregiver. And since we are each destined to play one of these roles at some point in our lives, reading it before the need arises would help begin the process from a few rungs up on the ladder.
Note: For more information about Stephen Schneider and The Patient from Hell, visit: http://www.patientfromhell.org.