Concepts:
Schiavo, Demme, brain, end-of-life, patients, persistent vegetative state, feeding tube, Lamers, living, die, care, death, Terri Schiavo, Americans, Demme notes, life, doctors, health care proxy, hospice, lives, breathe, brain dead, committee, whatever, wills, discontinue, reasoning, consensus, satisfaction, cruel.
Schiavo Case Forces Americans to Think About the Unthinkable What would Terri Schiavo want?
Would the brain-damaged Florida woman want doctors to remove the feeding tube that has kept her alive for 16 years?
Would she instead prefer to keep whatever life remains to her?
Whatever we think about the Schiavo case, it forces all of us to ask ourselves a troubling question.
If we were in the same situation as Terri Schiavo, what would we want?
It may be the most important decision we ever make.
Important decisions require information.Important decisions require information.
To get that information, we turned to two end-of-life experts.
Richard Demme, MD, leads the ethics committee at the University of Rochester Medical Center in New York.
His group is responsible for determining what kinds of life-prolonging medical care - if any - patients want.
Schiavo, Demme notes, is not brain dead.
Brain death means that there is no longer any electrical activity in any part of the brain.
People who are brain dead cannot breathe on their own - and Terri Schiavo clearly can.
Most of the doctors in the Schiavo case say she is in something called a persistent vegetative state.
Demme, who saw her brain scans at a medical meeting, agrees.
"It means the lower part of the brain that tells her lungs to breathe is still intact.
But it doesn't mean she has any thoughts or the ability to experience anything," Demme states.
"Her brain is pretty much full of fluid.
Barring some miracle, she will never get any better than she is now.
There is nothing in medicine we know of that will make her able to think or experience again.
To suggest there are medical therapies that can help her - that all she needs is tender loving care and she will be romping in the back yard again - is cruel."
End-of-Life-Decisions: Quality of Life, or Life Itself?
Just because a patient will never get better doesn't mean that person wants to die, Demme notes.
Some 40,000 Americans, Demme says, are living in a persistent vegetative state.
"Their loved ones think they may get some satisfaction from their lives," he says.
Some people think, 'I would not like to live like that.'"
She's kept alive by a feeding tube, says William Lamers, MD, medical consultant for The Hospice Foundation of America.
Lamers, one of the first doctors to develop a hospice program in the United States, has led the standards and accreditation committee of the National Hospice Organization.
What would happen if the tube were removed?
Schiavo would die of dehydration and malnutrition.
Surprisingly, Lamers says, it's a gentle death - and one chosen by many terminally ill patients.
Lamers has attended many patients who have chosen to die this way.
Most of the pain, Lamers says, is felt by the patient's family.
"It is usually more difficult for the family," he says.
"And it is difficult to let go.
You have to sit there and listen to the family, and encourage discussion between the patient and the family so they get their reasoning out in front of everybody.
I have done this with people who wanted to discontinue dialysis, disconnect the respirator, remove the feeding tube - there comes a time when people want to say enough is enough.
The determination the family needs to make is this: "Is this a reasonable conclusion to make right now, to say I will die a natural death from lack of oxygen or food or water?"
Most of us fear being in Schiavo's situation - that is, having to rely on others to guess what we'd want if we couldn't speak for ourselves.
Yet very few of us have taken the necessary steps.
A recent poll by FindLaw.com shows that only one in three Americans has made a living will.
And even a living will does not ensure your wishes will be honored, Demme notes.
Too often, he says, such wills fail to foresee specific circumstances that put people in ambiguous medical situations.
What's best, he says, is to legally designate someone to make decisions for you if you aren't able to make them yourself.
"When arguing parties are involved, legally designated health care proxy is the best thing we can have," Demme says.
"I won't say living wills or advance directives are bad, but they are frequently misinterpreted or interpretable.
