As Alan Meyers watched news of Terri Schiavo's death, he, like many, asked, "What if that were me?"
"If all I need [to stay alive] is food and water, do I want somebody to take them away?" he asked himself. "I think God has me here for His good purpose for however long He has me breathing." Despite years as an estate-planning lawyer in Midland, Texas, Mr. Meyers is re-examining the state-provided form for the living wills his clients routinely sign, following the March 31 death of Terri Schiavo, who at her husband's directive was allowed to die of starvation and dehydration. Mr. Meyers realizes that, if he or his clients are in Mrs. Schiavo's situation, the form he has directs physicians to remove the feeding tube.
"I'm not so sure these documents are worth much. I think they're confusing," Mr. Meyers said after Mrs. Schiavo's death.
Many lawyers-no matter where they stand on the Schiavo case-have long thought the same thing. And in the post-Schiavo era, they, along with physicians and theologians, are being asked, "How can I make sure that my family and I are filled with peace and hope when I die?"
All 50 states have some kind of living will law that allows the refusal of medical treatment if a patient is terminally ill or suffers from severe, irreversible brain damage. A legal document called an advance directive, signed by the patient and two witnesses, guarantees the patient's right of refusal. In many states, getting an advance directive is as simple as downloading a form and having two witnesses sign it.
"You should be aware that just having a written advance directive by itself does not ensure that your wishes will be understood and respected," states the American Bar Association website. The definition of words written or spoken, as the Terri Schiavo case showed, can be endlessly argued over.
For example, many states' prewritten advance directives allow the withholding of medical treatment if a patient is in a "persistent vegetative state." Medically, that means that a person, like Mrs. Schiavo, appears awake but may be unaware of who or where they are and unresponsive to things around them. As science's ability to study the brain grows, neurologists are arguing that some people diagnosed as in a persistent vegetative state are actually "minimally conscious." A study published in February in the journal Neurology showed that two "minimally conscious" men had the same brain activity when they heard tapes of their loved ones telling stories as healthy people had. In other words, though their bodies could not respond, their brains somehow did.
So is a person in a persistent vegetative state or in a minimally conscious state? Living wills beg that question, and more, says Hank Dunn, an ordained Baptist minister. A nursing home and hospice chaplain for 16 years, Mr. Dunn wrote a book called Hard Choices for Loving People about end-of-life decisions.
"The problem here is you probably cannot design a living will to get all the possibilities," he said. "You don't know all the nuances (ahead of time) of what disease might be killing you." It is difficult to know ahead of time whether certain treatments will be life-saving or only life-prolonging, he said.
Those with end-stage terminal diseases benefit most from living wills, said Mr. Dunn, because they know their likely cause of death and can plan their last days with explicit, helpful details.
For healthy adults looking ahead to their deaths, living wills work best as supporting documents for people they trust to carry out their wishes.
Most living will laws allow the designation of a health-care proxy, also called "health-care power of attorney" or "durable power of attorney." Unlike an advance directive, a health-care proxy's influence kicks in anytime one is unconscious. Typically people designate their spouses or close relatives as proxies.
It is important for the proxy to have a signed, original living will and to communicate with friends and family.
"Almost as important, if not more important than a piece of paper is to have a conversation with everybody who might have an interest in this," Mr. Dunn said. "I want my family to be harmonious when I'm dying."
Most people are comfortable with the general notion of ending life-sustaining treatment for terminally ill patients. But they are much less comfortable when dealing with the death of a loved one, Mr. Dunn finds in his travels and speaking on the topic.
"A common question that people would ask is, 'Am I killing my daughter or my mother by stopping the treatment?' As a Christian-or just a human being-you don't want to think you're killing someone. What I tell people is that the patient is dying from the underlying cause," Mr. Dunn said. "You have nothing to do with the fact that she's dying." He believes patients have the right to refuse feeding tubes-and to remove them from loved ones-in the same way they can refuse CPR or a respirator.
"It used to be that when people couldn't eat or drink anymore, we knew the end was near," he said.
As Mrs. Schiavo lay dying, many Christians spoke up for a moral obligation to use feeding tubes to nourish all sick people. Their cries echoed a statement Pope John Paul II made in a March 2004 speech: "Administration of food and water, even when provided by artificial means, always represents a natural means of preserving life, not a medical act." In its introduction to advance directives, the Christian Medical and Dental Associations states: "Removal of a feeding tube should not be done with the intention of that being the cause of death."
Numbering our days
Christian hospice and end-of-life professionals suggest considering these things when discussing end-of-life wishes:
· The technicalities of state law: Much depends on understanding how a state defines terms such as "terminally ill," "persistent vegetative state" and "life sustaining measures" before signing a pre-made advance directive form. You might be agreeing to something you do or do not want.
· Quality-of-life values: Rather than considering treatments you don't want, talk about what the end of your life could look like. If you value spending time among churchgoers, with family, or outdoors, think of how your final days can allow for that.
· Cost: Hospitals increasingly have "futile care" policies that allow them to end life support when a panel deems it futile and a patient cannot pay for the treatment. If you want your family to pursue aggressive medical treatment at the end of your life, pre-plan for ways to cover the expense.
· How long you want to try certain treatments: Rather than ruling out any one treatment, think about how long you would want to try something before discontinuing it. Consider treatment such as CPR, ventilators, feeding tubes, and dialysis.
Resources for end-of-life planning
· www.cmdahome.org: Website of the Christian Medical and Dental Associations. Has a link to a living will kit.
· www.abanet.org/aging/toolkit/ home.html: The American Bar Association's living will kit. Includes scripts for how to talk about the end of life with family and friends.
· www.de.state.az.us/aaa/pdf/ adfhc.pdf: Arizona's approved living will form. Has a specific list of treatments you may or may not want, and in what conditions you would want them. A good checklist for someone in any state.
· Hard Choices for Loving People by Hank Dunn: Discusses the most common choices people with life-threatening illness face. Available at www.hardchoices.com.