You're hospitalized and your family faces impossible choices. This is the scenario living wills are supposed to help with. By signing an advance directive, you think you're spelling out your wishes and preventing a nightmare like the fight among Terri Schiavo's relatives.
If only this were true. Very often, the instructions in living wills are "not worth the paper they're written on," says Charlie Sabatino, director of the American Bar Association Commission on Law and Aging. Even if a copy of your living will ends up at the hospital with you, doctors routinely don't know how to interpret them. They may still leave friends and family confused about what you want.
Leading experts in the field known as "advance care planning" are pushing for a sea change. Their goal, in short: Keep the lawyers away from advance care planning. Yes, many of these experts are, like Sabatino, lawyers themselves, but they say an overly legalistic approach may be why so many living wills prove useless, and why so few people ever sign them in the first place. Not surprisingly, people are unwilling to (quite literally) sign their lives away with forms they barely understand.
The alternative is more time-consuming, but ultimately more likely to mean your true wishes are followed. It starts with appointing someone you trust to make decisions on your behalf, a step that does require the correct form depending on the state you live in. Then, just as importantly, you must talk with your designated "health care agent" about your wishes — what sort of life you'd like to live if you get sick and under what circumstances you'd like to die. Then, and only then, it might make sense to formalize your wishes in a legal document like a living will.
Too many people flip this process around. They start by filling out some legal forms at their lawyer's office. Then, they never look at them again nor discuss them with relatives.
Doctors and nurses speak a different language from the one used by lawyers in many living wills, Baudo says. A typical living will directs physicians to stop treatment in the event of a "terminal" illness. This mystifies health care workers, who can define "terminal" as meaning a patient has anything from an hour to six months or more to live, she says.
Many living wills are drawn up years before they're relied upon. That's a problem because, as people age, they tend to change their views on what they can tolerate when facing a serious illness, says John Carney, president and chief executive officer at the Center for Practical Bioethics. Even if your views are consistent, you're unlikely to know how your views would translate into a treatment decision. "The clinical circumstances are virtually unknowable," Carney says.
Experts say everyone over 18 should at the very least designate someone as their health care agent.
"Things happen at any age," Baudo says. Schiavo was stricken at age 26.
Lawyer Nathan Kottkamp said your designated agent doesn't need to know how you feel about every specific medical procedure. It's more important that they understand your values.
"What's the most important thing for you in life? For some people, it's just being alive. For others, it's being able to engage with others." You might have strong religious beliefs that you want to uphold. Or you might hate hospitals and want to die at home.
When choosing your health care advocate, be sure it's someone who will stick up for you, but who also, as Baudo puts it, "plays nice in the sandbox." If your advocate "puts health care professionals on the defensive," she warns, "he or she is going to get less information from them." That's not automatically your spouse, she says. The result of conversations with your agent should be recorded in some way that can be referenced later, Kottkamp says. One option is to write a letter or even an email — no lawyer needed.
Another option remains a living will. These wills, however, should be treated very differently from other legal documents. First of all, don't lock it in a filing cabinet with your actual will, because the whole point is to make it accessible in an accident or sudden illness. Second, avoid being too specific. The words "always" or "never" are dangerous in living wills, Kottkamp says. Rather than "I never want to be on a ventilator," you could say "I only want to be on a ventilator as long as my loved ones believe it's making progress."