View Full Version : American Families Grapple with Decisions on Death

03-14-2005, 06:58 AM
MIAMI (Reuters) - The legal battle over whether to remove the feeding tube that keeps a severely brain-damaged Florida woman alive has overshadowed a quiet truth about death in America: More often than not, it follows a deliberate decision to end or withhold life-prolonging treatment.

A judge has ordered that a feeding tube be removed on Friday from Florida's Terri Schiavo, possibly marking the end of a long legal fight between her parents and her husband.

In most cases, there is no such drama because family members are able to agree whether to pursue further treatment. For an estimated 85 percent of the roughly 1.76 million people who die in America's hospitals, hospices and nursing homes every year, death follows explicit decisions by their families to either stop or not start treatment.

"America is a place where death is thought of as being optional," said Alan Meisel, a University of Pittsburgh law professor who specializes in bioethics and drafted a study for President Ronald Reagan on informed consent and end-of-life decision making.

The medical advances of the last three decades have made it frequently possible to delay death, for a while.

"Once you medicalize the process of dying, then the moment of death and the style of death is simply bound up in the whole set of medical decisions," said Steven Miles, a Center for Bioethics professor at the University of Minnesota. "You instantly put on the table the question of when do you stop."

Schiavo has depended on tube feeding since she suffered a heart attack in 1990 that starved her brain of oxygen and left her in what the courts have ruled is an irreversible and unconscious state.

A study done under the Reagan administration estimated there could be about 10,000 people in the United States in "persistent vegetative states" similar to Schiavo's in which they could live for decades if they are fed and cared for.


The public seldom hears about these cases because the patients have either left instructions for their end-of-life care or their families have come to an agreement about how far to go to keep them alive.

Schiavo's case is rare because her parents and her husband were unable to reach such an agreement and have fought in court for seven years over whether her feeding tube should be removed.

In 1990 -- the year Schiavo suffered her heart attack -- the U.S. Supreme Court said in a landmark ruling that food and water could be withheld from a comatose Missouri woman named Nancy Cruzan if there was clear evidence she would not have wanted to live.

According to 1996 congressional testimony, there are about 2.2 million annual deaths in the United States and 80 percent occur in health-care facilities. Of those, roughly 1.5 million deaths, or about 85 percent of the deaths in health facilities, are preceded by an explicit decision to stop or not start medical treatment, according to testimony Dr. Leon Kass, who is now chairman of President Bush's Council of Bioethics. The 1990 Supreme Court decision gave similar data.

Medical experts said a decision to stop or not start treatment most commonly involves whether to perform cardiac resuscitation or use ventilators, feeding tubes, kidney dialysis or antibiotics.

Generally the decision to stop or withhold them is made when treatment would prolong life or burden the patient without improving the underlying condition.

Sixty to 70 percent of seriously ill patients are unable to speak for themselves when the time comes to decide, according to the Minnesota bioethics center where Miles teaches.

And unless they have left instructions about what treatment they would want, it is usually their families who decide. What sets Schiavo's case apart is that her husband and her parents have been litigating her fate for seven years.

Her husband won court permission to remove the feeding tube and let her die and her parents are trying to reverse the order because they are convinced she could improve.

"A case like the Schiavo case is extremely rare and unusual because generally family members are in agreement, or they come to an agreement," Meisel said.

The courts and legislative bodies have set a broad legal framework for those decisions but have otherwise considered them a private matter for families to weigh according to their own beliefs.

Most families prefer to stay out of court and their disagreements are usually resolved when the patient's condition worsens and it becomes apparent that death is inevitable, medical experts said.

But those in a persistent vegetative state can live in that unchanging and unconscious condition for decades, so long as they can breath, receive food and water, are cleaned and turned to prevent bedsores, and receive antibiotics when they develop infection.

"There are a lot of cases like Terri Schiavo's all over the United States where the person is just staying in a nursing home, on a feeding tube and nobody is pressing anybody to do anything about it," said Carol Tauer, a visiting professor at the Minnesota center.

link (http://www.boston.com/news/nation/articles/2005/03/14/american_families_grapple_with_decisions_on_death/)