My brother Dave is a physician and a patient—a cancer patient. One of those whose illness is life threatening. A cancer that never appears in the same sentence with the word, "remission." A cancer that, in the United Kingdom, prompts a gentle, empathetic smile and the words, "Go home and prepare your affairs."
Thanks to an operation at the University of California and a vaccine trial at Duke University's School of Medicine, he also belongs to a club with few, if any, other members at all. He has lived with this disease for seven years. The historical median survival time for his kind of tumor is 7.5 months.
Those facts place him at the vortex of the debate over health care. The procedures have been phenomenally expensive. His prospects for survival are slim to non-existent. There are a lot of arguments that might be made for withholding the treatment he has received.
But he also stands at what may possibly be the cusp of an entirely new array of approaches to treating cancer that take us beyond the scorched-earth tactics associated with radiation and chemotherapy. There will come a day when what we do right now for cancer patients will be considered the equivalent of medieval bleedings and much of what we do for cancer victims will rely on vaccines and genetic manipulation. But for now radiation and chemo are the only tools we have, and the only bridge to the future lies with trial and error in the treatment of real women and men battling diseases that we hope will one day be easily conquered. That is why, as my brother wryly observes, "we call it the practice of medicine."
His is the story of much of medical history. It is rare, if ever, that procedures are invented in a laboratory and then applied to a patient population with universal success. In spite of physicians' efforts, before the first blue baby survived thousands died; before the first transplant patient who survived were patients who did not; before by-pass surgery succeeded, many efforts failed.
Therein lies a dilemma that has all been all but completely neglected in the healthcare debate: The decision to treat an illness is not simply a decision about the fate of a single human being. It is a decision about what we will or will not learn about treating illness. It is also about what we will or will not have at our disposal to treat illnesses in the future. Stop now, tell people to go home and prepare to die, and it is not just the individual who pays for the decision made. We will all pay and so will our children and grandchildren. Fairness and access are not the only important issues; the quality of medicine itself is at stake.
Imagine what the world would be like without treatments for cardiac disease, circulatory problems, organ failure, breast cancer, tuberculosis, or small pox—just to name a few of the once life-ending maladies we suffer. Where do we draw the line? When do we stop learning? Which illnesses will we choose to leave unchallenged?
Those are difficult questions to answer with the blunt instrument of life expectancy. My brother is not experiencing a disease, he is experiencing his disease—and that experience has been and is 100 percent of what has happened to him. The statistics describing the profile of his cancer have helped his physicians to decide how aggressive they should be, but they have been of little value in predicting the course of his illness. Thanks, in part, to the vaccine trial at Duke he is still here almost seven years later.
The collective differences are freighted with even greater significance for everyone concerned. Dave's cancer lies on the far side of a cure. Like everyone else in a clinical trial, he is reminded that the course of his treatment is unlikely to alter the course of his own illness, but it will aid physicians in caring for the next generation of victims. But once his condition—or any other condition—has been conquered or controlled, the prospects change for everyone.
The practice of this kind of medicine is inherently expensive and wasteful—and necessarily so. The initial research, the funding for new medications and procedures, and the grinding, exploratory nature of the treatment takes its toll financially and physically—to say nothing of the spiritual and emotional costs.
But how do we measure waste? Do we measure the efforts we make now against the probable survival of current victims? Or do we measure the value of present-tense waste against the future-tense conquest of a disease—as well as freedom from the misery and deaths it might inflict on subsequent generations?
To be sure, there are trade-offs and subtleties to be observed and at any one moment, we are always dealing with finite resources. But these are not decisions that can be made beyond the context of the doctor-patient relationship, and global metrics imposed by a board populated by accountants, actuaries, and a small band of physicians would foreclose on the learning that a more open-ended process fosters. Granted that the potential for abuse and exploitation of the current system is possible and does exist, correctives are undoubtedly needed.