End-of-Life Decisions: What Would You Want?
Schiavo Case Forces Americans to Think About the Unthinkable
End-of-Life Decisions: Feeding Tube Removal continued...
"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?"
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 uninterpretable. But a health care proxy is much more flexible. It gives us somebody in real time to talk to."