THIS IS A modern tragedy, replayed millions of times over. When there is no way of knowing exactly how long our skeins will run—and when we imagine ourselves to have much more time than we do—our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Fix Something. Is there any way out of this?
There’s a school of thought that says the problem is the absence of market forces. If terminal patients—rather than insurance companies or the government—had to pay the added costs for the treatments they chose instead of hospice, they would take the trade-offs into account more. Terminal cancer patients wouldn’t pay $80,000 for drugs, and end-stage heart failure patients wouldn’t pay $50,000 dollars for defibrillators offering at best a few months extra survival. But this argument ignores an important factor: the people who opt for these treatments aren’t thinking a few added months. They’re thinking years. They’re thinking they’re getting at least that lottery ticket’s chance that their disease might not even be a problem anymore. Moreover, if there’s anything we want to buy in the free market or obtain from our government taxes, it is assurance that, when we find ourselves in need of these options, we won’t have to worry about the costs.
This is why the R word—“rationing”—remains such a potent charge. There is broad unease with the circumstances we’ve found ourselves in but fear of discussing the specifics. For the only seeming alternative to a market solution is outright rationing—death panels, as some have charged. In the 1990s, insurance companies attempted to challenge the treatment decisions of doctors and patients in cases of terminal illness, but the attempts backfired and one case in particular pretty much put an end to strategy—the case of Nelene Fox.
Fox was from Temecula, California, and was diagnosed with metastatic breast cancer in 1991, when she was thirty-eight years old. Surgery and conventional chemotherapy failed, and the cancer spread to her bone marrow. The disease was terminal. Doctors at the University of Southern California offered her a radical but seemingly promising new treatment—high-dose chemotherapy with bone marrow transplantation. To Fox, it was her one chance of cure.
Her insurer, Health Net, denied her request for coverage of the costs, arguing that it was an experimental treatment whose benefits were unproven and that it was therefore excluded under the terms of her policy. The insurer pressed her to get a second opinion from an independent medical center. Fox refused—who were they to tell her to get another opinion? Her life was at stake. Raising $212,000 through charitable donations, she paid the costs of therapy herself, but it was delayed. She died eight months after the treatment. Her husband sued Health Net for bad faith, breach of contract, intentional infliction of emotional damage, and punitive damages and won. The jury awarded her estate $89 million. The HMO executives were branded killers. Ten states enacted laws requiring insurers to pay for bone marrow transplantation for breast cancer.
Never mind that Health Net was right. Research ultimately showed the treatment to have no benefit for breast cancer patients and to actually worsen their lives. But the jury verdict shook the American insurance industry. Raising questions about doctors’ and patients’ treatment decisions in terminal illness was judged political suicide.
In 2004, executives at another insurance company, Aetna, decided to try a different approach. Instead of reducing aggressive treatment options for their terminally ill policyholders, they decided to try increasing hospice options. Aetna had noted that only a minority of patients ever halted efforts at curative treatment and enrolled in hospice. Even when they did, it was usually not until the very end. So the company decided to experiment: policyholders with a life expectancy of less than a year were allowed to receive hospice services without having to forgo other treatments. A patient like Sara Monopoli could continue to try chemotherapy and radiation and go to the hospital when she wished, but she could also have a hospice team at home focusing on what she needed for the best possible life now and for that morning when she might wake up unable to breathe.