Hard choices: Local author lived the Schiavo story


The plight of Terri Schiavo has divided the nation, with various factions weighing in on her right to die– or to live. Few people, however, are as qualified to offer their opinions on the subject as Janet Lembke, a Staunton-based author whose 2004 book, The Quality of Life: Living Well, Dying Well, addresses issues central to the Schiavo case.

Lembke is no academic preaching from an ivory tower. Though she's a renowned author of books on the natural world, and recently received an NEA grant for her 16th publication, a translation of Virgil's nature poem "Georgics" due out in April from Yale University Press, Lembke has had to make difficult life and death decisions for members of her immediate family, including her mother and husband. But it is her daughter's case that mirrors Schiavo's almost exactly.

Ten years ago, at age 35, the younger of her two daughters– who was suffering from cancer– went into a seizure that deprived her brain of oxygen for 10 or 15 minutes. While rescue personnel were able to restart her daughter's heart and lungs, "There was no point in keeping someone in her state alive," Lembke says.

"My daughter was a warm body," says Lembke, "but she was a warm body without any sign of personality. We let her go."

Like Schiavo, Lembke says, her daughter retained some "autonomic reflexes," such as turning her head, opening her eyes, and vocalizing. But they were essentially "startle" reflexes, she says, akin to waking an infant suddenly.

Making the decision about when to let someone die is difficult, but Lembke says she discovered several "objective measures." While they come from the Muslim faith, she says they can apply to everyone.

1) How connected is the patient with the rest of the world, with family, friends, and community?

2) How well is this person's mind functioning?

3) Will paying for treatment actually lead to improvement, or will it lead to the ruination of a family?

"There are cases in which families have been bankrupted by long delayed deaths," says Lembke. "Thirty years ago, if you got very sick, you died. There was no lingering, no indistinct gray zone.

"Death and dying are things people should discuss," says Lembke. "It's there; it's a fact of existence. There's nothing, no religion in this world, that says it's sinful or immoral to withdraw treatment if the treatment is an unnatural way of delaying a natural process. It's only the last 30 years we can keep people alive indefinitely with tubes."

Everyone should have not just a living will, but a "durable medical power of attorney," in which one– and only one– person is named "agent," and another is named "back-up agent." In the event that a person cannot make medical decisions for him or herself, these agents have legal access to medical records and have the legal power to make medical decisions.

The agents will be useless, however, if people don't discuss their wishes while they're healthy.

For Schiavo's family, Lembke says she believes healing will only begin after Terri has died.

"Nobody," Lembke notes, "has called me a murderer."

Janet Lembke