Behind the media frenzy that is the Terri Schiavo case there is a woman. A woman that, at 27, collapsed of a heart attack triggered in part by her struggle with an eating disorder. A woman that, today, leads a very different life than the vibrant young woman pictured in newscasts.
She has remained in a permanent vegetative state (PVS) since 1990, her life sustained by a gastric feeding tube. Her parents’ legal battles to fight her husband’s court-backed orders to remove her feeding tube have captured national attention.
Everyone seems to have an opinion on the matter. Some have suggested part of the legal controversy surrounding her case could have been avoided if she had left behind an advance directive, or what is known as a living will.
“Part of the controversy in this case is that we don’t know precisely what her wishes would have been,” Scot Yoder, a bioethicist and professor of philosophy, said. “We have some testimony from her husband and friends that said that she wouldn’t have wanted to live like this. But she left no documentation, so we don’t have proof of that.”
[crain]The Schiavo case illustrates why it’s a good idea for all adults to have an advance directive. It’s not just for the elderly who might anticipate the onset of dementia or senility.
An advance directive, such as a living will or durable power of attorney for health care, is a document stating how you want medical decisions to be made for you if you become unable to make those decisions yourself. Yoder put it this way: “An advanced directive protects your decision-making power. It says, ‘OK, here’s how you’d make a decision if you were competent. How can we extend that decision-making power to a time when you’re no longer competent?’”
Michigan law does not recognize living wills, but durable powers of attorney for health care are. In a living will, you express your wishes concerning medical treatment if you become unable to do so. In a durable power of attorney for health care, you designate and authorize a patient advocate or health care proxy to make medical decisions for you. With a power of attorney, you also have the option of expressing your wishes regarding the medical treatment you would or would not want to receive.
Many people tend to think advance directives are for older people, but it’s actually more common for younger people to be in a persistent vegetative state, Yoder said. “Persistent vegetative state is often caused by severe brain trauma such as auto accidents, drownings and so forth, which are more frequent among younger people,” he said.
Any mentally competent adult over 18 may have an advance directive. Hospitals provide the necessary paperwork, and it is also widely available online. Legal or medical assistance is not required to write your advance directive, but professionals highly recommend it. Attorneys can help you avoid common mistakes such as using confusing and unclear language, or writing the advance directive so it is either too specific or too vague.
If you’re thinking of getting a durable power of attorney for health care, Yoder advises choosing someone who knows you well enough to make decisions on your behalf. You should also choose someone who would be a respected decision-maker for you. “If you decide that your best friend is the one who knows you best, that’s nice, but if your parents disagree with your best friend’s decision, that’s going to create a huge problem,” Yoder said. He said it is best to discuss your wishes with your family members in drawing up your durable power of attorney.
Making decisions to withhold or withdraw treatment for your loved one is the hardest thing a person would ever have to do, social work graduate student Anne Samuel Crain said. “It’s probably the most difficult thing in the world for parents to bury their children. It’s hard to be in a position where you have to choose to let your kids live, or lose them.”
As difficult as these decisions may be, Crain suggests the decision-making process is more peaceful for the family members involved when they realize they’re doing what their loved one would have wanted. “I don’t think [the Schiavo] case would have blown up the way it has if the family and the husband had had a better understanding of Terri’s wishes,” Crain said. And although Crain does not have an advance directive, she said, “I would hope that if my family were faced with a situation like [Schiavo’s], that they would be able to make the decisions together and have enough respect for each other.”
Zoology senior Charles Rutenbar said he does not have an advance directive but would consider getting one. Amid the Schiavo controversy, he’s already made his wishes known to his parents. “I don’t think that I’d want to be kept alive like that,” Rutenbar said. “If there was any chance of actually recovering I would want to be kept alive, but when it’s been such a long time or when there’s a small chance for recovery, I don’t think that I’d want to be kept that way. Especially if I wasn’t able to comprehend anything – why put that kind of burden on my parents?”
“I think it’s good to have your wishes written down, in case,” Rutenbar said. “My grandmother is in a situation like this now where she has extensive Alzheimer’s. We’re getting to the point where we’re going to have to decide what to do with her. Her life isn’t prolonged by artificial means right now, but it’s going to get to that point. She told us she wouldn’t want to be kept alive.”
We seldom know what events may occur to render us incapable to make our medical treatment decisions. Not only can these initiatives protect your decision-making power, they can also help guide your family members in those tough decisions about whether or not to withhold or withdraw treatment. At the very least, have a discussion with family members and make clear to them the options you would choose.
No one knows what Terry the woman would have wanted, but you have the time now to make your wishes known.
Information and advance directive forms are available at the State Bar of Michigan Elder Law and Advocacy Web site at www.michbar.org/elderlaw/adpamphlet.cfm.

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