On Nov. 4, 1971, Shep Glazer spoke before the House Ways and Means Committee, offering what was arguably the most powerful testimony presented to Congress in the past 40 years.
Glazer, a kidney failure patient, testified while attached to a dialysis machine. The then-vice-president of the National Association of Patients on Hemodialysis told the Congress that the 4,000 patients who needed the treatment could not afford it. He said a growing number of patients faced the choice of either dying or becoming destitute. And he and others who spoke that day warned that more Americans would be allowed to die when hospitals turned them down for dialysis because they couldn't pay the $25,000-a-year cost.
Congress was greatly moved by Glazer’s plea for life. The following year, lawmakers added full payment for dialysis to the nation's brand-new Medicare program, covering the cost of treatment and kidney transplantation, if necessary. Experts agreed that the End-Stage Renal Dialysis program might ultimately serve 10,000 people with kidney failure and would cost Medicare about $135 million dollars. They expected many of those on dialysis would return to work — paying taxes that would help cover the costs involved.
The experts were wrong.
Today, the ESRD program has become a costly, badly supervised program that lines the pockets of providers as growing numbers of terminally ill Americans find themselves prescribed dialysis, sometimes to little avail.
Program costs top $20 billion
Within four decades, the ESRD program has grown to consume about 6 percent of all Medicare expenditures, government figures show. The cost for the program tops $20 billion each year caring for 155,000 beneficiaries.
No other nation has anything close to these costs. No other nation finds itself in a situation where huge numbers of terminally ill and very elderly patients wind up on dialysis.
What ethical lessons can we learn from this attempt to do good by creating a federal health care entitlement program that has gone off the rails?
First, the government set the initial reimbursement rates too high. Officials asked doctors who perform dialysis what to charge and, lo and behold, the doctors said "a lot." Dialysis was so lucrative that private companies began setting up chains of dialysis centers throughout the U.S. Many patients who might have been candidates for transplants rather than dialysis were never told because the money made dialyzing them year after year was so lucrative.
Second, the government did not collect data on quality of care and or numbers of adverse events for many years. When data became available, officials did not share the information with patients and their families.
So, for a long time, patients had no way of knowing whether the complication rates at a certain dialysis center were perhaps twice as high as others nearby. It turned out that centers could make a very good living providing poor-quality dialysis to patients who didn't know any better.
Too many on dialysis
Last, it is hard to die in an American hospital without being put on dialysis. Because kidney failure is such a frequent complication of terminal illness, the population of people needing dialysis is far larger than Shep Glazer or the lawmakers who authorized the benefit ever imagined. Because there is guaranteed money to be made putting the ill on dialysis, that's often exactly what happens.
The End-Stage Renal Dialysis program was an act of noble compassion. But ripping off the American people by allowing too many people to receive lousy or unnecessary care is not compassionate at all. It is cruel.
Arthur Caplan, Ph.D., is director of the Center for Bioethics at the University of Pennsylvania.