By Charlotte Allen
Sunday, October 14, 2007
Do I have to have a living will? Last year, I had an experience that gave me the distinct impression that if I didn't have one, my life was hardly worth, well, living.
A routine mammogram had revealed that I had early-stage breast cancer. This kind of cancer is noninvasive and thus not particularly life-threatening if promptly attended to, and the required outpatient surgery isn't especially risky. Nonetheless, one of the shoals I had to maneuver through at the hospital (which otherwise afforded me excellent care) was a series of efforts to persuade me to sign on to the currently fashionable notion of a "good death."
Those efforts came in the form of a living will, one of those advance directives on end-of-life care that are currently urged upon us all by such high-minded organizations as the American Medical Association, the American Bar Association, state laws and an array of policymakers, bioethicists and advice columnists. Even this newspaper ran a long article in its business section this year advancing the notion that you haven't got your life in order without a living will. Whether to have a living will is presumably up to the patient. But I've developed a sneaking suspicion that someone else may be hoping to call the shots. After three attempts to induce me either to sign up or to state my refusal to do so in writing, I had to wonder how voluntary a living will really is in many cases. In my case, I started to feel ever-so-slightly harassed.
When I showed up at the hospital for some pre-surgery medical tests, one of the receptionist's first questions was, "Do you have a living will?" The form she gave me after I shook my head was as complicated as a tax return. There were numerous boxes for me to check specifying a range of conditions under which I might like to have a Do Not Resuscitate order hung over my hospital bed, whether I would want to be denied "artificial" food and water under some circumstances, what I thought about being taken off a ventilator, and so forth.
Furthermore, I found something weasely in the way all those options were presented, as though my only real choice were between being dispatched into the hereafter at the first sign of loss of consciousness or being stuck with as many tubes as needles in a voodoo doll and imprisoned inside a ventilator until global warming melts the ice caps and the hospital washes out to sea. I found the box on the form that said "I decline a living will" and checked it. Right now, my husband is my living will, and after we spent 13 days observing Terri Schiavo exercise her "right to die" by being slowly dehydrated to death after her feeding tube was removed in 2005, he knows exactly how I feel about such matters.
A few days later, when I returned to the hospital for the surgery, a different receptionist handed me a second living will. "I've already gone through this," I said, handing it back. After the operation, I was back to begin six weeks of daily radiation. A third receptionist pulled out the very same form and asked the very same question: "Do you have a living will?" At least I knew where to find the "I decline" box fast.
Now, I'm sure that all three receptionists were just doing their jobs. A 1991 federal law requires hospitals and other health-care facilities to make their patients aware of living wills. Yet the repeated experience of being given 30 seconds in a busy lobby to read and sign a complex document that cast a negative pall upon positive efforts to keep me alive did not inspire my confidence in the living-will industry.
In fact, when I contemplate the concept of "dying well," I can't avoid the uneasy feeling that it actually means "dying when we, the intellectual elite, think it is appropriate for you to die." Consider what's happened in recent years: The classic Hippocratic Oath and its prohibition against physicians giving people a "deadly drug" has collapsed with the growing acceptance of such notions as physician-assisted suicide, the "right to die," and even giving some very sick, disabled or demented people a little push over the edge, as seems to be the case in the Netherlands. People facing end-of-life decisions may well feel subtle pressure from the medical and bioethical establishments to make the choice that will save the most money, as well as spare their relatives and society at large the burden of their continued existence. A "good death" -- that's the English translation of the Greek word that begins with an "e." You know, euthanasia.
Even the hospice movement, which has historically opposed anything that smacked of euthanasia, has become tainted by this thinking. Hospices and home hospice care had always sounded wonderful to me: providing a comfortable place for the hopelessly ill to die with sufficient pain medication and no burdensome and futile efforts to prolong their lives.
Then, seven years ago, I paid what I thought would be a last visit to my 93-year-old father, who was dying of prostate cancer at home with round-the-clock nursing care. The phone rang, and I picked it up. On the other end, a middle-aged male voice inquired about my dad's condition. "Sooner or later he's going to go into a coma," said the voice, which never got around to identifying its owner but was presumably a friend of my parents'. "Then, what you have to do is take him to a hospice. That's what we did with my mother. They'll put him on a morphine drip, and he'll be gone in a few days. They know what to do." I was too dumbfounded to ask the obvious question: Why would someone in a coma need morphine? (My father, by the way, died at home some five months after that visit.)
Certainly not all hospices engage in practices that deliberately hasten death. But in February the American Academy of Hospice and Palliative Medicine reversed its long-standing opposition to physician-assisted suicide (which is legal in Oregon and said to be quietly practiced by many doctors elsewhere) and adopted a new set of rules that effectively endorsed the practice. The academy even decided on a new euphemism for the procedure: "physician-assisted death." Even where assisted suicide is illegal, many hospices now endorse "terminal sedation," the ethically murky practice of anesthetizing terminal patients, then cutting off their nutrition and liquids.
The problem is that nowadays there is simply no societal agreement on how people who are sick or disabled beyond hope of cure ought to be treated. Many people, especially highly educated, nonreligious people, think that "physician-assisted death" is exactly the right way to go -- or to send off your unconscious mother. If you think that bioethicists will erect safeguards against this sort of thing, think again.
As far as I can tell, bioethicists exist for the most part to do some moral chin-pulling before giving the green light to whatever consensus the rest of the elite have reached. If you believe, as the Dutch do, that it's fine for a children's hospital to euthanize severely disabled infants, you can always find a bioethicist to give you a stamp of approval. If you want to harvest the organs of dying people without waiting for brain death to occur, you can probably find a bioethicist to sign on to that, too. Myself, I'm with Slate blogger Mickey Kaus. In 2003, as the Schiavo controversy was raging and Yale surgeon Sherwin Nuland, author of "How We Die" and an advocate of limited assisted suicide, was pontificating on National Public Radio about her low quality of life, Kaus wrote: "If I'm ever in Terri Schiavo's situation, and not in any pain, please follow these simple steps: Keep the feeding tube in, and keep Dr. Nuland out."
It's not surprising that many people have reservations about theories of "dying well" that always seem to involve not staying alive. In 2004, the Hastings Center Report, a journal that focuses on bioethics, reported that despite decades of aggressive promotion of living wills, only 18 percent of Americans of all races had them, including only 35 percent of residents of nursing homes. Those most suspicious of the talk about "dying well" are African Americans and members of other minority groups. African Americans are only one-third as likely as whites to have a living will, and only one-fifth as many blacks as whites sign DNR orders.
According to the article's authors, it seems that people talk a good game about living wills, especially when they're healthy, but when their health begins to fail, they often have very different ideas about what they would be willing to undergo to stave off death for a little while. Furthermore, according to a 1990s study by the National Institutes of Health, even when patients have living wills, if those wills contain directives with which doctors and hospitals disagree (such as, I myself suspect, prolonging the patient's life instead of terminating it), many doctors simply ignore the patient's desires. Living wills, it would seem, are effective only if they happen to comport with doctors' and bioethicists' own theories about what is best for the patient anyway. For this reason, the authors of the Hastings study propose that instead of filling out a living will, people execute a durable power of attorney, a simple document that entrusts decisions about end-of-life care to a relative or friend who shares the signer's moral beliefs about death and dying. That sounds about right to me.
A year ago, I received the gentlest of shoulder-taps from the man with the bony fingers, though he'll inevitably be back. I wish we lived in a different kind of society, one with agreed ideas about what a "good death" means -- but we don't, at least not now. So I say: Go ahead and sign a living will if you want. Have your doctor pull out your feeding tube or inject you with cyanide or do whatever fulfills your idea of death with dignity. But count me out. I don't want to "die well"; I just want to die in peace.
Charlotte F. Allen is the author of "The Human Christ:
The Search for the Historical Jesus."