Life at All Costs: Part One, The Mid-Death Crisis

As the first wave of the 78 million baby boomers nears 65, The Fiscal Times offers a special report about the end of life. The next installment in this five-part series will appear on Monday, March 8th.

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The Fiscal Times
March 3, 2010

The memory is seared in Dr. Richard Payne's mind. Formerly a neurologist and palliative and pain specialist at Memorial Sloan-Kettering Cancer Center in New York City, Payne was treating a middle-aged man, a one-time circus clown, for spinal chordoma, an extremely painful cancer. Payne knew his patient's chances of recovery were slim to none, despite being aggressively treated with surgery, radiation and chemotherapy.

Yet the patient, who never lost his sense of humor, would not accept the fact that he was going to die. He demanded expensive treatments and experimental drugs even though Payne told him there was virtually no chance of surviving. As the tumors enlarged and burst out of the skin of the man's back in painful wounds that became infected and putrid, the circus clown kept demanding maximum care—a futile, yet extremely costly decision.

"He retained his optimism that we would pull something out of our magic bags," recalls Payne , who is now a bioethicist at Duke University. "It was terribly frustrating, because we had nothing to offer him that was going to save him."

Payne confides that he was sympathetic to the man and his condition. But he also was emotionally torn by the reality of his role—of trying to guide a man into the reality of death who wanted to be saved at all costs.

Richard Payne's dilemma is shared by doctors and nurses every day in the United States as society copes with a modern conundrum that no one expected—the wondrous technologies that have boosted the average lifespan by nearly a decade since 1960, and have improved the quality of life for millions of people, can also be painful and unnecessary at the end of life.

This runs counter to a society that believes that bodies, like cars and other machinery, can be fixed—which is often true. Over the past several years medicine has been able to replace vital organs, target cancers with smart bomb pills, develop prosthetic limbs that sometimes rival the original parts, and develop predictive and preventive interventions based on an individual's genetic code.

This technological bounty also can keep dying people alive beyond any hope of recovery and for regaining the special human qualities that define life. These qualities are hard to define, and differ according to the person, but they tend to include attributes such as the use of hearing, sight and other senses; mobility; breathing on one's own; an ability to read and learn, and to interact in a meaningful way with family and friends; and a certain baseline of mental and physical acuity. Quality of life at the end of life is what's at stake in the health care debate.

Call it a mid-death crisis.

The Growing Cost of Dying

"We have the capacity to do so much with technology, but we can't figure out what to do and what not to do with it," says Harvard economist David Cutler, talking about very ill patients. The gap between mid-death and the capacity of technology to keep us alive artificially also has become increasingly expensive as America spends hundreds of billions of dollars a year to take care of the hopelessly ill. The last year of life alone cost Medicare $120 billion in 2009—more than the budgets of the U.S. Departments of Education and Homeland Security combined. This number is expected to double within a decade.

Much of this money is spent on care that patients don't want, or need. Indeed, the majority of people say that they would prefer to die at home with their loved ones. Yet 75 percent die in hospitals or nursing homes, with one in five hooked up to machines and tubes in intensive care units.

During the last six months of life, patients in some major medical centers spend on average more than 10 percent of their final time in hospital beds, and visit physicians over 50 times. Per capita, Medicare pays $50,000 per patient in the U.S. for the last year of life.

David Ewing Duncan, The Fiscal Times
is chief correspondent of public radio's Biotech Nation, a contributor to Fortune, and a columnist for MIT Technology Review. He is also the director of the Center of Life Science Policy at UC Berkeley. The author of seven books, he's written for Wired, Discover