Susan Sontag's Heroic Final Months

Correction: my email notification for this piece contained an error. It was the poet Dylan Thomas, not Eugene O'Neill, who wrote "rage, rage against the dying of the light."

Susan Sontag’s death from cancer earlier this year left a void in American intellectual life that will be hard to fill. Two of her books, Illness as Metaphor and AIDS as Metaphor, inspired my own inquiry into the search for cures for fatal illnesses that many Americans viewed as divine retribution for a person’s habits or lifestyle.

So I was not surprised to read in her son David Rieff’s moving tribute in Sunday's New York Times Magazine (registration required) that Sontag obeyed Dylan Thomas' injunction to "rage, rage against the dying of the light" in the final months of her life. The 71-year-old New Yorker, who suffered from a rare blood cancer, spent about $300,000 of her own money for a risky and all-but-hopeless bone marrow transplant after Medicare and her supplemental insurance company turned down her request for reimbursement. When that failed, she tried an experimental drug. Not fighting for life was never an option.

Rieff, a contributing writer to the magazine, used his mother’s final struggle as a jumping off point for discussing end-of-life care in the U.S., particularly for the half million Americans who die from cancer every year. Knowing the statistics makes an oncologist’s work grim. Many cancers are not detected until they are in their final phases, when remissions are almost unheard of and even the most advanced treatments add a few months to life at best.

Rieff suggested it is the medical system’s duty to provide such care for those who want it. He criticized the work of medical ethicists like Daniel Callahan who believe society’s scarce resources would be better spent on public health interventions that reduce the incidence of cancer, which Rieff categorized as a “model based on better health outcomes for communities rather than individuals.” He quoted a New York palliative-medicine specialist who claimed that “if we as a society spent the sort of money on medical care that we spend, say, on the military, the challenge facing physicians would be very different.”

Alas, Rieff knows little about medical economics or the laws of large numbers. The Sontag case provides a textbook illustration of the costs associated with an “everything goes” approach to end-of-life care. The U.S. already spends nearly $2 trillion on health care – four times what it spends on the military. The government portions of health care – Medicare and Medicaid – alone exceed national defense.

What if the government gave every American who died of cancer the same level of treatment that Sontag fought for and received? Multiply that $300,000 times a half million people and it would add $150 billion to the nation’s health care tab. That would drive health care spending from the current 15 percent of GDP, already the highest in the world, up to 16.4 percent in one fell swoop.

Writer Shannon Brownlee last week offered another view of this difficult subject. Writing in the Los Angeles Times, she cited a study that compared the wildly varying costs of end-of-life care in three Southern California hospitals. Not only did the the high-cost intensive-care hospitals fail to prolong life, the study suggested, it wound up that "those intensive-care hospitals may actually increase a patient's chances of dying by as much as 2% to 6%. That's because hospitals, for all their power to deliver lifesaving treatments, can also be dangerous places where every drug, every treatment, every test carries the risk of error and harm.”

Most people who study the health care system as a whole, rather than viewing it as a personal interaction between the person who is sick and the health care they receive, eventually come to understand that always paying for the most expensive treatment does not always lead to the best result. Yet the researchers who point that out usually get attacked as supporting rationing and a dual health care system that favors the rich.

Sontag's final months remind us that just because you can buy it doesn’t mean that it will work. When clinical trials show that the chances of a medical intervention succeeding are vanishingly small, it is not unreasonable for a health care provider to say that it isn't worth the money or effort. What the public needs to do is insist that such decisions are based on scientific evidence and not the profit-driven "just say no" philosophy that motivates many health insurance companies.

Sontag’s approach to her impending demise was in character. She fought for life with every means at her disposal. Her grit and determination in the face of insurmountable odds was admirable. But it didn’t save her life or even extend it. Her heroic final months have something to teach a society with limited resources and an aging population. It's a lesson that is hard to accept.

Posted by gooznews at December 5, 2005 09:03 AM