Living Wills: Not a Be-All and End-All

Living wills seem like good social policy. The public looks at the case of Terri Schiavo, whose end-of-life wishes are being fought over in court by her husband, her parents and the state of Florida, and thinks, if only she had created a document spelling out her desires, none of this would have had to happen. But the truth is, living wills don’t work often enough or reliably enough to justify the money we’ve spent trying to make them routine and universal. It’s time to face that fact.

One basic problem is that too few people have living wills. Hardly more than a quarter of us can be persuaded to write them, even after vigorous efforts to encourage their use. Education is not the problem. Studies show that people know about living wills, but they think they won’t need them and prefer to entrust decisions to their families.

And if they want to write wills? Consider the hurdles.

First, people have to be able to accurately predict how they would feel about various treatments down the line. But even patients evaluating contemporaneous treatments are often daunted by the difficulty of making such decisions. They falter in gathering information, they misunderstand and ignore what they do gather, and they rush headlong into choices. How much harder, then, is it for people to conjure up decisions for an indescribable future and unknowable medical conditions with unpredictable treatments?

Further, their preferences must be stable. Yet on average, studies find that almost one-third of people’s preferences about life-sustaining medical treatment change even over a few years. Understandably. Would Christopher Reeve have predicted that he could live so fulfilling a life with quadriplegia?

People must also grapple with drafting complex instructions. Studies find that living wills regularly contain mutually inconsistent instructions. Nor do the standard forms sufficiently help. One version deploys vague terms like “artificial means” and “heroic measures.” Another asks the writer to specify numerous treatments for numerous conditions, a labor of analysis few of us are equipped to undertake.

Living wills must also reach decision-makers in order to be effective, but many never do, for the road from the drafting table to the ICU bed can be long. For instance, one study of 182 patients with advance directives found only 29 patients with those directives in their charts.

Ultimately, it is incumbent upon the surrogate decision-maker (typically a family member acting as executor of the living will) to interpret the treatment preferences correctly. But according to a recent study using hypothetical scenarios, surrogates who saw a living will did no better interpreting their loved ones’ preferences than did surrogates who didn’t see a living will. Even surrogates who had discussed living wills with the wills’ writers had trouble.

The empirical evidence indicates that not one of the requisites to making living wills successful social policy is met now, or can be. And so studies repeatedly show that living wills do not influence the level of medical care overall. Neither doctors nor families lightly give up hope for a patient. By the time they finally decide a patient is dying, the patient’s condition is usually so dire that treatment looks pointless quite apart from any living will.

So what is to be done? First, people can gain some control over their fate by choosing their own surrogate via a durable power of attorney, a legal document that names who will make decisions for them when they are no longer able. This can’t guarantee that their preferences will blossom into fact, but it may help. At least the choice of a surrogate is relatively straightforward to articulate.

Few things influence choices at the end of life more than society’s default rules about when to treat and when to stop. Those rules have in recent decades changed profoundly to accommodate people’s changing preferences. There is room for still more change. Those rules must recognize how few of us would want to languish -- perhaps for decades -- in a vegetative state.

Finally, we have to admit that there are limits on our ability to control our fate, to reach blindly into the future and be certain we can impose our will on it.