The sad case of Terri Schiavo, the comatose Florida woman at the center of a right-to-die battle, has thrown a harsh national spotlight on the decisions families and caregivers face when a patient is close to death.
Politicians, right-to-lifers, judges, the Catholic Church, and the American Civil Liberties Union have all weighed in on whether the 39-year-old Schiavo, who has been in a persistent vegetative state for 13 years, should continue to be kept alive with a feeding tube, as her parents wish, or allowed to die, as her husband has requested. But the many public arguments that have been made on both sides consistently neglect one important aspect of the debate: the cost of keeping Terri Schiavo alive.
It may seem coldhearted to bring up money -- but money is already the elephant in the room. Estimates have placed Schiavo's care as high as $500,000 a year since she collapsed 13 years ago. And she is no anomaly. A 1995 study estimated that 16,000 to 35,000 Americans are in a persistent vegetative state, meaning they have been comatose with severe brain damage for more than a year. The cost of their care, which can vary widely, adds up to $1 billion to $7 billion in any given year. "The hidden issue in all of this is how much our society can afford to indulge this desire to keep people alive no matter what the cost," says Dr. Stuart J. Youngner, chairman of the Bioethics Dept. at Case Western Reserve University.
Granted, the price of caring for the permanently comatose isn't much in the context of the $1.4 trillion the U.S. will spend on health care this year. But the U.S. cannot afford to pay for every medical need, and the Schiavo case offers the opportunity to open a public dialogue about a concept that has been taboo for too long: rationing health care.
Medical ethicists and health-care experts have argued for years that rationing should be part of the national conversation. "We've tried to sweep it under the rug," says Alan Meisel, a bioethicist at the University of Pittsburgh. "We don't have unlimited resources, and we ought to be thinking about where they can do the most good." For a start, we could admit that health care in the U.S. is already rationed -- albeit very arbitrarily. The 43 million uninsured, with their limited access to health care, present the most obvious example.
If rationing were the deliberate result of clearheaded discussion, the U.S. might be pouring money into cost-effective public health programs that save the most lives, such as childhood immunizations, prenatal care, and better diabetes management. Yet we woefully underfund such efforts.
Where does the U.S. health-care system bestow its bounty? Spending is heavily skewed toward acute care for the sickest, particularly the elderly. In a study published last year, the mean medical expenditure for senior citizens was $37,581 in the final year of life, vs. $7,365 for other years. Medicare spends 27% of its budget on patients in their last year -- and those funds serve only 5% of enrollees. This is far different from most European systems, where expensive treatments are routinely denied when the outcome is likely to be grim. In Belgium, for example, the final year accounts for less than 13% of the health-care budget.
U.S. clinicians tend to favor heroic interventions. One survey of 600 critical-care doctors found that the cost-benefit ratio of a given procedure was among the least important factors when making care decisions. More than 40% said patients in a vegetative state should be admitted to intensive care if they face a life-threatening event.
This approach may fly in the face of what the public wants. Dr. Ezekiel J. Emanuel, chairman of the Clinical Bioethics Dept. at the National Institutes of Health, notes that almost every surveyed tallied has found that 80% of the respondents say that they would not want to be kept alive in a vegetative state. Perhaps there's a message here. We as individuals can make clear what medical efforts we would want when there is little chance of recovery. Then hope that doctors, and our own families, listen.
By Catherine Arnst