The lesson of the Terri Schiavo case: Living wills no panacea for end of life

Dispute was aberrant but it offers lessons for risk managers

In the final days of the dispute over whether Terri Schiavo, the 41-year-old, severely brain-damaged woman in Florida, should be allowed to die by removing her feeding tube, news commentators repeatedly cited the need for patients to have living wills. If only Schiavo had signed a living will before her injury, all of this turmoil could have been avoided, they said.

But that’s just not true. Risk managers know better than most people that, while living wills can be useful in some circumstances, they do not guarantee that end-of-life decisions will be simple or uncontested. The Schiavo case proves that point well, says Carl E. Schneider, MD, JD, the Chauncey Stillman Professor of Law at the University of Michigan (UM) Law School and professor of internal medicine at UM in Ann Arbor. Schneider has studied living wills extensively with researcher Angela Fagerlin, PhD, a research scientist with the UM Medical School and Veterans Affairs Ann Arbor Healthcare System.

Schiavo did not have a living will, but the two researchers say the document would not have helped quell the vicious debate among family members.

"I don’t think a living will would have changed things one iota," says Schneider. "You have a family that is embroiled in such mutual animosity that they are prepared to do anything they can to strike out at the other side. If you really feel that way and have the resources to do it, you can cause unending trouble for the people you’re dealing with, and that is clearly what has happened here."

Any document can be contested

So if she had a living will, even one that was unusually specific in detailing that she did not want nutrition and hydration after a prolonged period in a vegetative state, Schiavo’s parents still would have contested it, he says. It is very hard to write living wills that accurately reflect a person’s desires, he says, and even the best living will can be picked apart by a good lawyer.

"The living will depends not just on the language you use, but on the clarity of the medical circumstances," Schneider explains. "Here, there would have been ambiguity even if the living will said she did not want to live in a persistent vegetative state. They would just keep arguing that she was not in a persistent vegetative state and they would find doctor after doctor who would say that for them. That’s exactly what they did, and a living will would not have deterred them."

No matter how ironclad the living will may appear, any opposing party with enough motivation can keep picking at it, word by word, until they find a court that will agree it is not so ironclad after all.

"Every day I go teach a class of law students; I teach people how to do that," Schneider says. "Then you have to hope they won’t do it in an irresponsible way. But lawyers are trained to identify ambiguity and to build arguments based on even the smallest opening."

Don’t push for more living wills

Fagerlin cautions risk managers not to jump on the living will bandwagon just because everyone else seems to be recommending them in the wake of the Schiavo case.

To have any effect on calming the debate, Schiavo’s living will would have had to be extremely specific, describing exactly the situation she was in 15 years after the incident that left her brain damaged. The problem, Fagerlin explains, is that no one can anticipate precisely what situation they will be in when the living will is invoked. Schiavo was just 26 when her heart stopped because of a chemical imbalance believed to have been brought on by an eating disorder, leaving her severely brain-damaged. How many healthy 26-year-olds can imagine being in the condition Schiavo was in after 15 years of brain damage and make an informed decision about what should be done at that point?

Very few, Fagerlin says. The result is that even when someone with the best intentions creates a living will, it is rarely specific enough to avoid the kind of intrafamilial dispute that occurred with Schiavo. If one member of the family, especially someone with substantial standing like the parents, disagrees with the living will or the whether it is time to invoke it, the document usually is not strong enough to withstand the challenge, Schneider says.

In most situations, the patient is better served by assigning a durable power of attorney to a trusted relative or friend who can then make all health care decisions on his or her behalf, Fagerlin says. That arrangement is far more practical and reliable than a living will. But in the Schiavo case, even a durable power of attorney would not have made much difference, she adds.

A durable power of attorney grants legal standing for one person to make decisions for another; but in the Schiavo case, the courts repeatedly confirmed that the patient’s husband had that authority. As far as the courts were concerned, the husband was responsible for determining her fate and a durable power of attorney would not have added to that authority in any way.

So how could the patient, the hospice, and the family end up in a situation in which such legal documents have no bearing? Schneider says the Schiavo case is "a truly disastrous example" of what can happen when opposing parties are motivated to contest end-of-life decisions no matter what. That is not what happens in most cases.

"Very few of these cases even go to the hospital’s ethics board, much less going to 25 different court rooms in search of a decision," Fagerlin says. "I think it would be a terrible reaction to use this case for any policy changes or legislative initiatives because it is so very unusual."

Watch for legislative action

One bad outcome from the Schiavo case could be a growing emphasis on living wills and proof of a vegetative state.

"If I were a risk manager, I would be worried that in reaction to this case legislatures will pass laws requiring that you always err on the side of life and prevent you from withdrawing treatment unless you provide all sorts of really clear evidence," Schneider says. "The other thing I would worry about is any effort to promote living wills even more than they already are. Apparently, there are some efforts under way in Washington as a result of this case to make us all have living wills. I can only imagine how hospitals are going to get the burden of that requirement."

If there is any good news for risk managers in the wake of the Schiavo controversy, it is this: You’re very unlikely to have a similar case at your own facility. Even in the Schiavo case, the health care providers were essentially bystanders waiting to be given instructions, he notes.

"No one would want to be the provider with all these lawsuits swirling around you, but this is so completely atypical. It is the most unusual decision to end treatment in the history of the United States," Schneider says. "It is not a good example of anything at all in a legal sense. It is dangerous to try to draw conclusions on anything based on this case, because it such a freakish case."

Schneider does suggest that risk managers look at the Schiavo case as the nightmare scenario for how badly end-of-life decisions can go off the rails. You’re unlikely to find yourself in the same degree of controversy, he says, but memories of the Schiavo case may prompt risk managers to intervene earlier when families are not in agreement about a patient’s death.

"It seems there were so many points at which they might have compromised, but once they got locked into this mutual hatred there was no hope of discussing the case reasonably," he says. "That’s where the risk manager might play a role, by helping the family come together through mediation before the animosity goes past that point of no return."

Encourage mediation early in disputes

Schneider’s research shows that most end-of-life decisions are made over the course of 24-72 hours, and the family ends up feeling they did the right thing. What can set off a dispute, he says, is not the substance of the decision. Instead, disputes are prompted by the way people are treated in the midst of such sad circumstances.

"It comes down to very small human misbehavior that irritates the family, like someone saying he is the spokesman for the family and everything must go through him," he says. "That infuriates people. What upsets people about the hospital is not being given information. It’s the pathetic woman who won’t leave her husband’s bedside to go to the bathroom because she’s afraid she’ll miss the doctor and not be able to talk to him for another day."

Risk managers can help by making sure family members are properly attended during this time, he suggests. For instance, they should have a place to rest and wait other than the patient’s room. Too often, he says, family members report feeling lost and out of place in the hospital, left to stand in the hallway.

"If you want to avoid trouble with the family, there are some straightforward things you can do that are good for everybody. Make sure they have all the information they need, and attend to their basic human needs in this tragic time for them," Schneider says. "Those are better than any legal solutions, and it’s also just a good thing to do for people."