Unplugged: Reclaiming Our Right to Die in America, by William H. Colby, New York: AMACOM, 272 pages, $24.95
If you believe every person should have control of his or her mind and body, it probably seems easy to leap to a quick, smug opinion about "our right to die in America." Of course individuals have a right to die, the standard individualist position goes; the decision to end a terminal illness with the assistance of a physician should be left to the doctor and the patient.
William H. Colby's new book complicates such straightforward conclusions. Unplugged: Reclaiming Our Right to Die in America shows us ethical gray areas that are not easily elided. More important, it reminds us that advances in medical technology have radically altered our relationship to the most familiar Shakespearean question: "To be, or not to be?" Roll over, Aristotle, and tell Ayn Rand the news: There is now a middle ground regarding whether and when a human being still exists. Colby fights his intellectual battles on that middle ground.
Colby is a lawyer who has worked with right to die issues primarily as they relate to the persistent vegetative state, the condition wherein a person's body is kept alive long after consciousness is gone. He has been on both sides of the issue, working with families that did and that did not want feeding tubes removed from their loved ones, always supporting their choices over the choices favored by the state. But as we witnessed last year in the case of Terri Schiavo, trying to decipher choice when the person at issue is brain-dead can lead to a complicated mess. If the individual whose life is at stake cannot make life-and-death decisions, who is best qualified to do so?
In 1956 Paul Zoll, a physician at Beth Israel Hospital in Boston, used an AC defibrillator to shock a stopped heart back to life. That development set in motion a complicated, twisting series of events that has redefined the moment of death for all of us. By 1970 respirators were keeping people breathing, "alive" but unconscious.
That made Karen Ann Quinlan a cause célèbre in 1976. The New Jersey woman had been brain-dead for a year but kept breathing, apparently with the help of a respirator. Her parents, who wanted the respirator unplugged, took their case to the New Jersey Supreme Court and won. The respirator was unplugged, but Quinlan unexpectedly kept breathing. She remained unconscious but alive for nine more years.
In 1987 the case of Nancy Cruzan gave an eerie new meaning to the phrase legal limbo. After she spent four years in a persistent vegetative state, her parents finally decided it was time to let go. They asked that her feeding tube be removed. But because they had previously signed an agreement allowing its insertion in the first place, the hospital refused. The case lingered before the courts and the media until June 1990, when the Missouri Supreme Court ruled that in the absence of clear evidence of Cruzan's wishes, the feeding tube would have to remain in place. The Cruzans took the case before the U.S. Supreme Court, which ruled against the family, stating that the Missouri ruling didn't violate the U.S. Constitution. But the Cruzans still had the option of convincing a Missouri court that there was sufficient evidence of Cruzan's wishes for them to get to remove the tube. When they returned to a local judge, the state attorney general chose not to oppose the family, and in December 1990 the feeding tube was removed. Religious protesters entered the scene in a big way, taunting the Cruzans with shouts of "murderer" as they exited the hospital after bidding a final farewell to their daughter.
This ongoing legal and social tug of war about what to do with the vegetative reached its most colorful apex, so far, in the Terri Schiavo case, in which a comatose young woman's husband and parents battled each other over whether she would have preferred to live or die. Colby covers that tale exhaustively, including the unprecedented intrusion of the U.S. Congress, which in March 2005 passed the For the Relief of the Parents of Theresa Marie Schiavo Act. That law tried to give "jurisdiction to hear, determine and render judgment…for the alleged violation of any rights of Theresa Marie Schiavo" to the U.S. District Court for the Middle District of Florida, a court known to be sympathetic to those opposed to allowing Schiavo to die. It also gave "any of Schiavo's parents" the right to sue anyone involved in "withholding food, fluids, or medical treatment necessary to sustain her life."
Armed with the bill, Schiavo's parents made an emergency appeal to the U.S. Supreme Court to have the patient's feeding tube reinserted. The court rejected the appeal in a one-sentence ruling, and the empty shell that had been Terri Schiavo was at last allowed to be still. But further federal intervention to keep the dead alive remains a possibility.
People can claim autonomy over their fate if they wind up in a persistent vegetative state by registering "living wills," documents that state specifically what treatments they would and would not accept in such a condition. Colby reports that even these are frequently ignored, particularly if a conscious family member disagrees with what the will contains and is willing to fight it in court.
Here Colby shares his own experiences, outlining one of the paradoxes that can make these issues so difficult to think through. He has spoken to his own family frequently about what he'd like to have happen in the event he is alive but no longer conscious or able to communicate. But he adds that if they go against his wishes, well, that's fine too. It doesn't matter much to him. After all, he'll be unconscious.
With the author himself shrugging, you can see why "right to die" dilemmas so frequently end up a confused muddle. (Granted, it took an act of Congress to transform a relatively private muddle into an occasion for clown-show demagoguery.) Colby's focus on the rights of those who are already essentially absent doesn't just frustrate attempts to find the political position that best comports with individual liberty. It frustrates the attempt to find much meaning
at all. It's far easier to arouse enthusiasm for the rights of conscious, suffering, terminally ill patients who are actively exercising their right to die.
Our right to shut down our own bodies and brains is a logical extension of the principles of the Enlightenment, and it fits neatly with personal liberties relating to mind-altering substances, consensual sex, birth control, elective surgery, and (surely soon to be an arena of political conflict) genetic performance enhancement. Despite all the ink spilled on Schiavo's unconscious body, the right-to-die movement has every reason to focus its energy on the rights of those who are still uncontroversially competent to decide for themselves. After all, persistent vegetative states are rare; the merely terminally ill we have in relative abundance.
But then you wonder: What possibilities does medical technology yet have in store for us? What kind of maintenance half-lives might emerge in the near future? And what about the medical miracles promised by many scientists and the accelerated rate of change prophesied by transhumanists and singularitarians, who believe that technological and scientific advances will soon make possible radical life extension or even immortality? What happens if and when there are major medical breakthroughs every month, every week, maybe even every day? It is not difficult to imagine, 10 or 20 years down the road, that technophiles will have taken the place of religious conservatives, protesting against the murder of a "temporarily unoccupied" body (not dead, please—that ugly old word just sounds so final) in the expectation that cures may be just a couple of years, months, or weeks away. If that line of reasoning seems a little far out or flaky, consider that nobody had given much thought to the rights of our contemporary undead—vegetative patients—before technology made their existence possible.
Given the chance, Americans seem willing to adopt a live-and-let-die attitude on these matters, respecting individual autonomy. A Pew Research Center Poll released earlier this year reported that 84 percent of the country supports right-to-die laws. In 1994 Oregon passed its Death With Dignity Act by popular vote, allowing physician-assisted suicide for terminally ill patients. Other states, particularly California, have been engaged in lengthy political battles provoked by attempts to pass similar legislation.
Unplugged dedicates its final 40 pages to such issues, and Colby effectively explains the political controversies involved. He seems to lean toward the pro-choice side, but he is frustratingly indirect, stating only that "the social experiment with physician-assisted suicide in Oregon has been conducted thoughtfully and with careful oversight" and that he supports the state's rights against the attempted interventions of Attorneys General John Ashcroft and Alberto Gonzales. He disapproves of physicians' participating in suicide ("my sense is that physician-assisted suicide presents a line that society does not need to and should not cross") and paints Jack Kevorkian, roaming the countryside in his Volkswagen van of death, in frightening, disapproving colors. Colby's thinking regarding the right of the terminally ill to choose death seems terminally confused. Is he saying that the terminal and suffering should have the right to end it all, but only without a doctor's help? It sounds like it.
It seems to me that we can allow doctors to consult their own consciences in deciding whether alleviating suffering through death under some circumstances might not conform with the injunction to "do no harm." Granted, the issue wouldn't loom so large if it weren't for laws that require us to request a doctor's prescription before we acquire the lethal chemicals we need to kill ourselves. But as someone who took two years to get accustomed to pumping my own gas, I'd like to have the legal option of having a friendly doctor serve me my final cocktail should circumstances require it.
Individual autonomy in matters of personal choice, including the choice to live or die, is the libertarian ideal. But that doesn't mean such choices don't create often-knotty complexities. Disabled activists worry about our old friend the slippery slope, where those deemed to have a lower quality of life are pressured to exit the scene, making the "individual choice" aspect questionable. Some disabled activists seem actually to identify with people in persistent vegetative states. Given the history of eugenics during the 20th century, I can't blame them. And some poor people may feel so burdened by the high costs of medical care that they will hasten their own deaths, or be pressured by relatives or taxpayers to do so. Finally, some critics worry that those who are merely depressed will find it too easy to receive assisted suicide, thus ending their lives when they may only need a new prescription medicine or a compelling hobby. Clearly, psychiatric examination and treatment should be part of any doctor's procedure before supplying a death cocktail to a patient. But should we deny the rights of the many to protect the few who are likely to cheat life in this manner? After all, there are many ways to commit suicide, and most depressed people act on impulse rather than engaging in the long-term planning that would be needed to convince a doctor to help them die.
Still, these are all legitimate concerns, and we should keep a wary eye out to ensure that we don't slide inadvertently into a system of semi-involuntary euthanasia of the poor and infirm. But we should ultimately err on the side of personal privacy and choice. It is as much an outrage for the state to force a person to live as it is to force a person to die.
RU Sirius is the host of The RU Sirius Show and NeoFiles on the MondoGlobo Podcast Network, at mondoglobo.net. He co-wrote Design for Dying (HarperCollins) with Timothy Leary.