This morning’s New York Times features a frontpage article that tells the story of Tom and Brandon. They are cousins who shared in life’s adventures and, in recent months, battled advanced, aggressive forms of melanoma.
The standard of care doesn’t work, but a trial drug does — or at a minimum, has promising results. And in the case of patients with aggressive cancers, a bit of relief or some measure of progress is the most that you can hope to achieve.
Tom and Brandon entered a drug trial that was testing the promise of this new drug, but one (Tom) was randomized (chosen) to receive the trial drug and the other (Brandon) was given the standard of care —which everyone knows doesn’t work. On the face of it, such practices were established to insure patient safety and the scientific integrity of test results. But every set of rules can become a blunt and brutal instrument in the hands of people who refuse to exercise moral responsibility. Because of those rules, Brandon (whose health began to fail dramatically) was unable to find anyone who would give him the trial drug. So, not long ago Tom buried his cousin.
Scientific standards, rules for patient safety, and fiscal responsibility are all legitimate concerns in the real world of medicine where practice comes up hard against the limits of our knowledge and resources. But for the practice of medicine to be moral, physicians need to make judgments based upon the needs of their patients.
In this case the rules came up hard against the bureaucratization of moral judgment and a young man was condemned to death in the name of learning something we already knew.
Recent debates about health care seem to assume at some level that if we create legislative structures and programs that enshrine certain values, then we will guarantee that everyone will receive the care they should receive or, at a minimum, the care that is reasonably available. That is quite simply not true. The rules that were applied in this case were designed to avoid the horrors of the past, but blindly applied, they took the life of a young man.
Most of us will never have the opportunity to shape the legislative process in any direct way, but we do have the responsibility to resist approaches to the challenges we face that assign moral responsibility to the blunt, unthinking application of rules to the lives of those in need. And that is true of almost any moral challenge — they cannot be evaded, dispatched with legislation, or dealt with once and for all by creating a list of rules — at the heart of every moral dilemma is someone like Tom, Brandon, you, and me.
http://www.nytimes.com/2010/09/19/health/research/19trial.html?_r=1&hp