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 -- that's hardly guaranteed -- 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, attorneys themselves, but they say an overly legalistic approach may be why so many living wills are proving 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 when you end up sick or injured and unable to speak for yourself. 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 quickly filling out some legal forms at their lawyer's office. Then, they never look at them again nor discuss them with relatives. The result is often confusion and guilt for the relatives who must decide on treatment. "I can't tell you how many times I've seen people not get what they want because the patient did not adequately share their wishes," says Fern Baudo, a nurse who is president of Fern Baudo Adult Health Nurse Practitioner PC, which helps clients with their advance care planning.
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, noting Alzheimer's Disease is a terminal condition.
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. According to several studies, only about one-third of adults have filled out advance directives. "People get scared when they see those boxes on the form," Carney says. "And they don't fill it out."
That's a dangerous decision because experts say everyone over 18 should at the very least designate someone as their health care agent. "Things happen at any age," Baudo says. Terri Schiavo was stricken at age 26. Medical and demographic trends heighten the urgency of advance care planning. As Baby Boomers enter retirement age, medical advances mean that deaths by strokes, heart disease and cancers are falling. That means more people end up with Alzheimer's Disease or other forms of dementia. In a 2010 study of almost 4,000 adults age 60 or older, more than 70 percent lacked the ability to make decisions at the end of their lives. Increasingly, our bodies are lasting longer than our minds do.
To encourage people to take these issues seriously, Nathan Kottkamp, an attorney at the firm McGuireWoods LLP, five years ago started the "National Healthcare Decisions Day Initiative," which publicizes April 16 as a day each year to talk about advance care planning. 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, Kottkamp says. "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 for 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."
Litigation of the Schiavo variety is rare, Sabatino notes, so your main concern should be easing the burden on loved ones. "The closer you are to the illness that will do you in, the more likely you are to have specific instructions," Sabatino says. Farther away, "it's just impossible to do with any precision." And, if you trust the agent you've designated and you regularly discuss your wishes with him or her, such instructions may not even be necessary.
To contact the editor responsible for this story: Suzanne Woolley at firstname.lastname@example.org