Volume 29 • No. 4
Dean calls for improved bedside teaching
For Whyte, medical direction of the ORs is a balancing act
Match Day brings 151 new house staff to SHC, LPCH
SHC/LPCH house staff arrivals.pdf
Lastword now includes Cath Lab results from Apollo
LIVE, DIE, DECIDE
by: LAWRENCE M. SHUER
"ÉMrs.
[Terri] Schiavo's case has torn apart everything it touches. What began
as a personal tragedy has rent asunder first her family, then her state,
and is now tearing at the Congress and the nation at large. It has become
the touchstone for hard questions: How do we treat the end of life?
Who should make decisions about the last days of loved ones'É."
- The Economist, London, p. 29, March 23, 2005.
The controversy about whether to remove an unfortunate Florida woman's feeding tube became a "Perfect Storm." That's the same metaphor I used last December to discuss how regional emergency room closures, tight funding, crowded facilities and even seasonal epidemics have created challenges for SHC that are greater than the sum of their individual parts.
The Terri Schiavo case is, of course, a national not local controversy that continues even after her death on March 31, two weeks after her feeding tube was removed. At the center of this "Perfect Storm" is a woman who could not speak for herself. Near the center is her discordant family and caregivers. But the case has escalated far beyond its roots, involving the Florida legislature, Congress, the President, and the American court system on all levels.
At its essence, the ongoing discussion centers on whether a severely brain damaged woman should have been allowed to die or continue after 15 years to be kept alive with tube feedings. The specifics are sad but at face value familiar. In 1990, Mrs. Schiavo collapsed in her home, presumably due to an electrolyte imbalance possibly related to bulimia. Her heart temporarily stopped, she suffered cerebral anoxia, and Mrs. Schiavo was devastated neurologically in a condition described as persistent vegetative state (PVS). Unlike the finality of brain death, persons defined as in PVS are supported by a functional brain stem although the "higher" cerebral cortex is so severely damaged that the person has no cognition as we know it.
Potentially troubling to those who interact with a PVS patient is the macabre reality that basic brain stem reflexes, such as smiles, grimaces, etc., continue and thus emulate conscious emotion.
After some seven years, Terri's husband said he saw no hopes for a miraculous or spontaneous recovery. Since he said his wife had explicitly asked not to be kept in this state, Michael Schiavo asked that his wife's feeding tube be removed to allow her to die naturally.
However, Terri's parents, sister and brother disagreed, triggering a bizarre five-year court and legislative battle.
What followed: The tube was removed in April 2001, reinstated on a judge's order two days later, then removed a second time in October 2003. That time Florida Gov. Jeb Bush signed a hastily passed "Terri's Law," which allowed him to order reinstatement of the tube. The Florida Supreme Court struck down what amounted to a private law and a state judge ordered the tube removed on March 18. Before her death two weeks later, the story really escalated.
The U. S. Congress on March 21 passed a highly unusual bill sending the case to federal jurisdiction, and shortly thereafter, President Bush rushed back to Washington from a Texas vacation to sign the measure. However, the federal courts, including the U.S. Supreme Court, refused to order the feeding tube reconnected.
Why had this case become a "Perfect Storm"? Here's a quick assessment, which of course needs to be evaluated over time:
Uncertainties, or
at least misunderstandings, about what cognitive ability is possible in
a persistent vegetative state has raised public questions about the definition
of life. Was Terri Schiavo aware of her surroundings? Much has been made
of the "starving" or "dehydrating" of Mrs. Schiavo and how cruel this
seems to be. (In fact some have stated how much kinder we are to death
row inmates when they finally are put to death with a lethal injection.)
The complexities of Florida's political climate, where social and religious
conservatism stand alongside liberal, more urban values and a progressive
economy, is a likely crucible for political confrontation.
An unusually strident family dispute clouded efforts to mediate the case
outside the public arena, and the legal disputes are ongoing.
Timing: Social conservatives needed an "issue," and this one came along
at the right time. Cynically, a President flying back to sign a bill on
behalf of Terri Schiavo could be interpreted as a way to divert attention
from the troubles facing his Social Security reform and the Iraq war.
Jurisdictional ambiguity: I don't think I'm being too partisan when I
say that the governor of Florida, the President's brother, would likely
feel less threatened by federal intervention than would most governors.
Even greater than the sum of the parts is the effect this controversy could have on the fundamental precept of our democracy that legislatures and Congress make laws setting policy, and then the courts and the executive branch apply those laws to individual cases. "Terri's Law" and the Congressional action of March 21 seem to fly in the face of that notion. Even more troubling is that while this case involved the fight to reattach a feeding tube - seen by proponents as "preserving life" - the precedent Congress set with its March legislation could easily be used otherwise. Can Congress now pass legislation to withhold life support, say, from a patient whose Medicare costs were deemed excessive? Personally, I don't even want to take even the smallest of steps in that direction.
And perhaps of direct concern to us as physicians here at Stanford is the direction end-of-life issues are moving. Let's look at some questions this raises:
Who should have the right to decide a patient's fate in extreme circumstances? We have seen in the Terri Schiavo case what happens when this goes public. I believe that this is traditionally the decision of the "next of kin" or that person who is closest to the patient with the authority to make medical decisions for that person if incapacitated. When disagreements occur, our Ethics Committee has often mediated successfully.
Who is best qualified to evaluate the individual's quality of life, especially when the diagnosis, such as PVS, offers no answers of its own? I hope that our legislators will understand that the processes that have been put into place at the hospital level deal fairly well with these types of issues. Taking them out of the medical arena, and injecting them with charged and often inaccurate descriptions such as "starving," is not helpful and could have untoward consequences.
How are we to allow people to die? This gets back to the difference between active and passive euthanasia. As one medical ethicist once stated, isn't the act of deciding to allow someone to die an active process? Isn't withholding life-supporting measures an active decision? If so, why don't we carry that one step further and allow the administration of drugs that would hasten the inevitable in a more humane manner? That's the other shoe ready to drop, and perhaps we should discuss this but after an appropriate interval outside the context of this highly charged case.
One positive offshoot of the Terry Schiavo case might be to help the public understand the importance of such tools as "living wills" and advance directives. The current "Perfect Storm" gives us plenty of opportunity to reflect on our own mortality. Would we want to be tube fed for 15 years? Recent polls show conclusively that most people wouldn't want to exist for 15 years in a persistent vegetative state and agree with Michael Schiavo's decision to disconnect his wife's feeding tube.
Personally, I have let those who hold my durable power of attorney know how I wish to be treated if I were to become incapacitated. I urge all of you and your patients to consider doing the same. It's time we restore the patient-family-doctor relationship to medical decision-making, and I can't think of a better place to start than ourselves based on what we have seen can happen if we don't.
