Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [64]
Paul told us, “Clinical medicine is an area that moves away from clarity, an area that I think of as having higher uncertainty. You can’t really make rational decisions in this world. Doctors like to have what I call a ‘badge of rationality,’ because it gives them authority, and they try to appear competent for the patients. It’s really unsettling for the doctor to be uncertain, and even more disturbing for the patient. I keep in my head a whole list of synonyms for uncertainty: unsure, skeptical, unreliable, fickle, capricious, indecisive, controversial, vague, indefinitive. I mean, are those labels you want to apply to your doctor? So I think that even if the situation is highly uncertain, they go out of their way to appear certain, to ooze rationality.”
One of the major risks of a bone marrow transplant is “graft versus host” disease. This occurs when the bone marrow from the donor, grafted into the host’s body, treats the host’s tissues as foreign. The new, transplanted blood cells then attack the host’s skin, bowel, liver, and other organs. Paul already knew that the transplanted donor cells could attack and damage parts of his body. The consent form stated that his skin might become so inflamed that it could slough off; he could suffer intense diarrhea; his liver might fail, sending him into a coma. But the attack of the transplanted cells, “graft versus host,” could be partially tempered with powerful and potentially toxic medications.
“How could I assess what it means to have graft-versus-host disease as an outcome without ever having experienced it?” Paul asked rhetorically. “So I’m thinking, How do I evaluate it? How do I measure the severity and impact on my quality of life as an individual? They told me I had a 50 percent chance of getting graft-versus-host disease, with a 10 percent chance of it affecting my liver, a 40 percent chance hurting my intestine, a 30 percent chance involving my skin. I have no way to understand what that all means.”
Paul pointed out that as opposed to money, which is an objective outcome, there is no objective measure for the experience of graft-versus-host disease, either immediately or over time. “When I say over time, it means that having a complication like skin or liver or intestinal toxicity is not a static experience.”
Paul went ahead with the marrow transplant. The procedure itself was successful, but he is living with graft-versus-host disease. Paul was familiar with the three methods of assigning a “utility” to your state of health—the 0 to 100 scale, the time trade-off, and the standard gamble. He echoed the views of numerous researchers that no method captures the dynamic nature of living with illness. “Some days it is better, some days it’s worse. I take medications for it, so that it fluctuates in terms of severity. And, of course, I’m experiencing the side effects of those drugs. Some days they are mild, but other days not. I’m nauseated, fatigued, have no appetite. So for me to have been able to sit at point zero, looking down the pike at a bone marrow transplant and the real risk of graft-versus-host disease, and make a truly rational decision, like in economics—it just couldn’t be done.”
Considerable research points to the wide gulf between imagined and actual quality of life. A remarkable study assessed well-being in two groups of people: lottery winners who had just received a windfall of money and accident victims who had just become paraplegic. Not surprisingly, the two groups reported vastly different levels of well-being, with