Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [63]
He received several cycles of treatment, and for some six months, his leukemia was contained. But then, as predicted, his disease took a more aggressive form, unresponsive to a series of chemotherapy regimens. The specialist at the cancer center proposed that Paul undergo a bone marrow transplant. Here, a donor whose marrow was genetically compatible with Paul’s would be found, hopefully a family member. The stem cells from that donor would be infused into Paul and would migrate into his bone marrow after it had been cleared of cancerous cells by high-dose chemotherapy and radiation. In essence, this is a medical resurrection, treating the patient with lethal doses of drugs and then rescuing him with the primitive stem cells that will grow and develop into all of the blood components.
“The doctors present the transplant to you as though it is a decision,” Paul said. “Well, I think it’s really a pseudodecision. When they asked if I wanted to have a bone marrow transplant, I answered, ‘What else is there?’ They said, ‘Well, you have to have it,’ so then the decision was like, ‘Well, is it a transplant or is it death?’ There was no spectrum of options, no real decision trees. It was transplant or die.”
Paul traveled again to the cancer center. He was admitted to the hospital and began the arduous preparation for the transplant. “They make believe that the patient has some level of control,” Paul said. “But I think it’s an illusion. There are literally hundreds of decisions being made without my knowledge.” As opposed to the printed schedule he received on his first visit as an outpatient, with a seamless transition from one test and appointment to the next, now he found himself as an inpatient essentially at the mercy of a large, impersonal institution. “All of a sudden, a transport person would arrive and take me for an X-ray, and I had no idea that an X-ray had been ordered. Or they would repeat blood tests in the afternoon, when I wasn’t expecting to be stuck again. Then I’ll tell you about a decision that just irked me. It just irked the heck out of me. The decision was made that I needed intravenous fluids, hooked up to an IV twenty-four hours a day, liter bags changed promptly at ten o’clock each morning. But then I was gaining weight, and sure enough, the bags of fluid continued to be hung there. No one questioned this. Once the decision was set into motion, there was no stopping it. I ended up gaining fifteen pounds, all fluid, and I had been in the hospital only a week.” Paul asked one of the young doctors on the team if he really needed all this fluid.
“It’s our protocol,” he was told.
“What might seem like a very trivial decision, turned out to have a really negative effect on me.” Paul’s legs and thighs swelled and then his belly. “I was the victim of a rigid protocol. They want you to believe that you have control. But when you walk into a hospital environment, with these types of protocols, there is no control.”
Several days later, the hematologist arrived with an informed consent document for Paul to sign. This listed the reason for the transplant and described the side effects expected with the procedure. “There is this pretense, this sort of minuet between the doctor and the patient, making believe they’re involved in a rational decision, but they’re not, really.
“The rules I had used in business no longer applied,” Paul explained. He listed for us the underlying assumptions needed to make a medical decision in the same rational way he advised companies on a strategic decision. “The first assumption is that each aspect of the disease is well-defined and understood. Next, that all elements of information are available and considered. Third, the doctors and the patients have the same well-formulated goals. Fourth, all solutions and treatments have been considered. Fifth, every consequence of every treatment is well understood. And sixth, the outcome of every treatment can be evaluated using objective criteria.”
The sixth assumption was the most problematic. “In business,