One of the most unsettling rites of passage of being a medical student or junior physician is one's first encounter with a patient who has no prognosis for recovery. A paradigmatic case has recently drawn media headlines in Great Britain: the tragedy of Baby RB, who survived thirteen months with a rare and progressive genetic disorder known as congenital myasthenic syndrome, which left him paralyzed and prevented him from breathing on his own. By his final weeks, the baby's lungs filled with fluid multiple times each day, so that the child likely felt as though he was choking to death. All attempts at therapy had failed. According to medical authorities, no child had every recovered from such a state. Nonetheless, thousands of scarce pounds were expended on extending this infant's life by artificial means, seemingly prolonging suffering for the sake of suffering. If RB's parents had not agreed to scale back on "heroic" measures, the child's costly, agonizing and futile "treatment" might have continued for many months.
Similar tragedies have drawn headlines in the United States as well. In one notable case in 2007, the mother of a toddler named Emilio Gonzales -- left blind, deaf, intubated and terminally-ill with Leigh's Disease -- fought to have a tracheotomy performed on the dying child so that a feeding tube might be inserted, even though the seventeen month old's physicians all insisted that such an intervention would be both painful and pointless. But Emilio was hospitalized in Texas, not London. Physicians and hospitals in Texas have the authority, under the landmark Advance Directives Act of 1999, to withhold or withdraw medical care in situations where such care is futile. In Emilio's case, the child died before such actions could be fully implemented. However, Baylor University ethicist Robert Fine reports that in at least twenty-seven other Texas cases prior to 2007, hospitals did successfully withdraw or withold care in circumstances of medical futility.
The Advance Directives Act of 1999, which then Governor George W. Bush championed as the product of careful negotiations between liberal and conservative legislators, was the first state statute to guarantee legal immunity to physicians and hospitals who refuse to provide futile care. The law contains numerous safeguards: Family members of the patient must be allowed to participate in the consultation process, the hospital and physicians must attempt to find another hospital willing to care for the patient, and a ten day grace period must be permitted before any treatment is withheld or withdrawn. During that time, the patient's family has the right to arrange to transfer the patient to another hospital or to find physicians willing to provide care. The practical result is that medical care is withdrawn only when no hospital in the entire country believes that continuing care is medically reasonable. That, presumably, includes religiously-affiliated institutions with conservative values on end-of-life issues. Such cases are few, but they are costly -- ranging from a minimum of $60,000 to $80,000 a year to keep a patient in a vegetative state, to millions for the complex surgeries and round-the-clock ICU support demanded by some families.
Providing futile care is not merely a moral neutral, but a moral evil. In a health care system with highly limited resources -- and a society that, rightly or wrongly, refuses to expand the size of the pie -- every dollar spent on "helping" a patient who cannot recover is money not devoted to a patient who still has hope. If healthcare resources were infinite, providing years of ventilator support to cognitively dead victims of anoxic brain injuries would be a relatively harmless indulgence that might mollify their loved ones, albeit at some cost to their own fundamental human dignity. However, in the real world of today, funding such care means that others go without necessary medication or have fewer precious minutes to spend with their doctors. I like to think of our current healthcare system as an enormous yet finite blanket that can only cover so many people -- when one individual slides under the cloth, somebody else is pushed out.
We can either prolong the life of a single elderly patient who has bled into her brain and has been unresponsive for months, or we can use those same funds to install safety bars in the showers of hundreds of other senior citizens to prevent them from falling in the first place. We can stick feeding tubes into unconscious cancer patients, or we can devote those resources to finding a cure for cancer. We can prolong the lives of Emilio Gonzalez and Baby RB, or we can provide better pediatric care to thousands of poor children. Our country denies life-saving dialysis treatment to immigrants because their legal status, while providing such treatments to patients with no hope of regaining consciousness. Such a Dickensian approach is the rare measure that manages to simultaneously defy Kantian, Christian and utilitarian ethics. I try not to reflect upon how many mammograms or mosquito nets can be purchased with $60,000.
Of course, a true utilitarian will argue that a just society should spend and ration its resources sensibly in order to save as many lives as possible. One does not have to adopt such an unforgiving position to acknowledge that care, beyond a certain point, is unreasonable. A grim prognosis does not necessarily justify an end to care, but a truly futile prognosis is another matter. Hospital ethics committees, which have the insight of collective experience to guide them, are well-suited to make these determinations. In contrast, families are often driven by false hope, or guilt, or a basic misunderstanding of the cruel realities of the patient's prognosis. By allowing for input by ethics committees, which often draw members from a wide range of disciplines including medicine, nursing, law, theology and social work, the Texas model offers an excellent blueprint for other states to follow.
Unfortunately, a peculiar orgy of bedfellows -- ranging from anti-abortion crusaders to a letterhead disability rights organization called "Not Dead Yet" -- have joined forces to derail the expansion of medical futility statutes. Most recently, this motley band fended off efforts to adopt a Texas-style statute in Idaho. The great irony is that these same groups often argue for a healthcare provider's "right of conscience" to refuse participation in well-established medical therapies such as the prescription of birth control. However, they are unwilling to accept that many physicians find providing futile care to be not merely inconvenient, but morally repugnant. In all states, a medical resident has a right to refuse to participate in an elective abortion. In most states, a medical resident who is unwilling to provide futile care can be fired. The same groups that argue for the autonomy of physicians and private hospitals refuse to allow those hospitals a right to decide that certain patients are truly beyond hope.
In an ideal world, every patient who entered a hospital could be restored to full health. (Unlike the conservative humanist Leon Kass, I see nothing ethically wrong -- and only pure unadulterated good -- in extending the human life expectancy by as many years as possible.) The stark reality is that some patients are leagues beyond hope. If they are not dead yet, they are certainly darn close: accumulations of failed organs supporting permanently unresponsive brains, fed through stomach tubes, hydrated via IVs, often with the help of artificial lungs and artificial kidneys and, increasingly, ventricular assist devices to replace damaged hearts. Some physicians, examining such patients every day, inure themselves to a task they view as pointless but unavoidable. In contrast, I cannot help thinking of the desperate patient on a gurney in the emergency room, waiting for a hospital bed, whose care is delayed because -- in all states but Texas -- first come is still first served.
We have witnessed considerable public controversy in the past months over claims that the relatively benign end-of-life counseling provisions advanced by Republican Senator Johnny Isakson of Georgia and Democratic Congressman Earl Blumenauer of Oregon amount to "death panels" -- assertions which everyone other than Sarah Palin now seems to recognize as patent nonsense. That does not mean that there is no role for ethics panels to determine that some patients are beyond medical hope. If these are "death panels," then I support them wholeheartedly, as did George W. Bush and many conservative Texans. As physicians, we are in the business of saving lives, not pandering to ideologies. A national medical futility law, modeled on the Texas Advance Directives Act of 1999, is a long-ovderdue and life-saving measure.