What would Terri Schiavo (search) want?
Would the brain-damaged Florida woman want doctors to remove the feeding tube that has kept her alive for 16 years? Her husband believes she would. Would she instead prefer to keep whatever life remains to her? Her siblings and parents believe so.
And what about us? 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. To get that information, WebMD turned to two end-of-life experts.
End-of-Life Decisions: Brain Death vs. Persistent Vegetative State
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 tells WebMD. "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.
"Studies find that roughly two-thirds of Americans say, 'Quality of life is really important to me.' They would rather die a little sooner if their remaining life would be better," he says. "And about a third of Americans say, 'I don't care how bad things get, I will take every little gasp of life I can get, because death lasts a long time.'"
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. "There is no consensus on this. Some people think, ‘I would not like to live like that.’"
End-of-Life Decisions: Feeding Tube Removal
Terri Schiavo can't chew or swallow. 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.
"She has a clear plastic tube that enters the middle of her abdomen," Lamers tells WebMD. "Food is prepared in a blender and poured into a spout and gravity-drained into her stomach. That can provide sufficient calories to keep her alive year after year. It is a wet mixture, so it provides hydration as well."
What would happen if the tube were removed? Schiavo would die of dehydration and malnutrition. That sounds terrible.
"When the feeding tube is discontinued, she goes into a negative protein balance," Lamers says. "Her body begins to metabolize her reservoirs of fat and muscle tissue. That — or, if she doesn't get water, dehydration — will probably be the thing that causes her kidneys and liver to stop functioning. Then she will go from kidney and liver failure to heart or brain dysfunction and die."
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.
"That kind of a death is not very painful," he says. "We know this from a tremendous amount of observations in patients who voluntarily stopped eating. They didn't experience a great deal of pain or discomfort."
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?"
End-of Life-Decisions: Getting What You Want
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 (search).
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. But a health care proxy is much more flexible. It gives us somebody in real time to talk to."
SOURCES: Richard Demme, MD, nephrologist and ethics committee chairman, University of Rochester Medical Center, Rochester, N.Y. William Lamers, MD, medical consultant, The Hospice Foundation of America. FindLaw.com.