Terri Schiavo died 10 years ago today — not long after her feeding tube was removed by order of a Florida judge acting at the request of Schiavo's husband that his wife be allowed to die.
She was 41 and had spent nearly half her life in a vegetative state after suffering a cardiac arrest in 1990, causing a severe lack of oxygen and brain damage. The highly publicized legal case surrounding her husband's plea not to keep her artificially alive roused debates across the world and at the U.S. Supreme Court.
What is Schiavo's legacy? What have we since learned about brain function, vegetative states, and how we should talk about death — long before we're gone?
Today, some families still battle at the bedside. The condition of Bobbi Kristina Brown, found facedown in a bathtub Jan. 31, had not changed as of March 20, and people within her famous family have engaged in a fight and public arguments.
Many of us still have not gained enough wisdom from the Schiavo episode. And the political and personal ripples of that moment remain as well.
So let's recall what happened. At the heart of that case, Michael Schiavo, her husband, began requesting in 1995 that she legally be allowed to die.
He believed she would never emerge from her comatose state — as did every doctor who examined her. He did not want her to live in a permanent vegetative state, unconscious, unresponsive and unable to interact with the world since he felt that she would not want to be in that condition.
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Terri’s family bitterly disagreed. They still believe to this day that she would have wanted to live, that her husband did not have her interests at heart and that they were unfairly pushed aside in their effort to save her life.
What began a private dispute moved from Florida circuit courts to district courts to state courts to federal courts, to Congress, to the U.S. Supreme Court.
President George Bush almost created a constitutional crisis between the courts and the executive branch in trying to override the Florida courts which had, time after time, backed Michael Schiavo’s decision. Former Senator and surgeon Bill Frist saw his Presidential dream disappear when he challenged Terri Schiavo's diagnosis without directly examining her.
During his tenure as Florida governor, Jeb Bush decided to fight his own state courts in trying to override their decision to let her die.
The Vatican wound up challenging U.S. law which, as the Schiavo case affirmed, allows the stopping of artificial food and water under certain circumstances. The Vatican said food and water could not be stopped, thereby, leaving many Catholic health care institutions and Catholics in this country — and others — uncertain as to how to manage requests to let a patient die by removing a feeding tube.
The facts did not support those, including Terri Schiavo's parents, who held that she was not in a permanent coma. An autopsy definitively settled that question. Her brain was severely atrophied, weighing less than half of what it should have. No treatment then or now could have reversed the brain damage she suffered. She was not conscious for all those years and never again would be.
What has changed in America?
Ten years later, too few of us fill out living wills, advance directives or select a surrogate decision maker in writing. In some states, only married relatives have the standing to make treatment decisions, leaving those who are living together but not married at risk of being ignored.
Some states have laws voiding written patient directions about what should be done if a woman in Schiavo's condition is pregnant. Other states will only honor written directions by the patient not prior conversations or oral statements. And three states have enacted laws since Schiavo's death that allow the terminally ill to end their lives — laws for which Terri would not have qualified since she herself was not competent or able to communicate in any way.
And we still find ourselves embroiled in fights about what diagnoses of coma and permanent vegetative state and brain death really mean.
In addition to Bobbi Kristina Brown’s plight, the body of teenager Jahi McMath is still being maintained by artificial means in New Jersey more than a year after her parents refused to accept that she died at a hospital following elective surgery.
But Terri Schiavo taught us some very important lessons.
Spouses have the last word on medical-decision-making for the incompetent. If you don’t have a spouse, you should write down who you wish to decide for you and have that witnessed and notarized using one of the many forms available on line.
It is important to know the beliefs of doctors, hospitals and nursing homes about stopping artificial life support such as a feeding tube so that everyone is on the same page should such a decision need to be made.
And America, both young and old, still needs to try harder not to avoid talking about death and one’s wishes about what one would want if disability or illness makes communication impossible so that there will be fewer Terri Schiavos in the future.
Arthur L. Caplan, Ph.D., is the Drs. William F. and Virginia Connolly Mitty Professor and founding head of the Division of Bioethics at New York University Langone Medical Center. He is the author or editor of 32 books, most recently "Contemporary Debates in Bioethics" and "Ethics in Mental Healthcare: A Reader."