Schiavo case highlights end-of-life issues

April 1, 2005

KATE GOLDEN/Frontiersman reporter

MAT-SU - Social worker Matt Nelson, at Valley Hospital's Hospice of Mat-Su, held up a piece of paper. If Terri Schiavo had lived in Alaska, he said, "This is all we would have needed."

The Florida woman has depended on a feeding tube for water and nutrition since 1990, when a potassium imbalance stopped her heart for five minutes, leaving her in what doctors have called a persistent vegetative state.

Court battles between the Florida woman's spouse and parents on whether to remove her feeding tube have wrenched the hearts of Americans, especially in the past few weeks, and spurred unprecedented interest in their own end-of-life options.

Living wills and advance directives specify to what extent doctors should go to keep an unresponsive or terminal patient alive. A one-page power-of-attorney document designates the decision-maker. The documents can be as short as one page. Attorneys, hospitals and other health-care facilities, and even the Internet, provide them.

Yet only 20 percent of patients who end up needing someone else to make life-or-death decisions have prepared documents to help their surrogate decision-makers, said Maria Wallington, a medical ethicist for Providence Health System in Anchorage and former pediatrician.

"Some people don't want to think about the fact that they're going to die someday," she said.

The benefit of the national attention given Schiavo's case has increased awareness of the importance of making these decisions ahead of time, Wallington said.

"Lots of people are doing the advance directives. They're flying out the door," she said. "We might get up to 30 percent instead of 20 percent."

Hospice Director Babetta Daddino said her patients are no longer looking for a cure and are already preparing for death.

Unexpected twists into unresponsiveness, like motor-vehicle collisions or strokes, are more problematic, she said. End-of-life options "may not have been anything more than a discussion." And even a discussion is taboo in some cultures, she added.

Wallington said there is no good reason to hesitate about having such conversations and preparing legal end-of-life directives.

"If you haven't had the conversation, (loved ones) are then stuck trying to represent you at a time when they're grieving. Put it in writing so they don't have to second-guess you and they don't have to feel like they were the ones that ended your life."

The living will expands

Last year's Alaska State Legislature passed a new suggested form of advance directive, which went into effect Jan. 1. The one-page living will is now a 12-page behemoth. But Wallington said the enhancement is worthwhile.

"It encourages you to think about options, instead of saying, 'Don't do anything for me if I'm dying.'"

Nelson said it would help people avoid the legal complications of the Schiavo case. But he added, "I think that a real good conversation with your family and your doctor would basically convey the same information."

For example, a person in hospice treatment, which requires a doctor's referral, has already been thinking about those options.

"When you are dealing with healthy folks who are trying to prepare for the future, (the new document) would be the one."

As an ethicist, Wallington meets with families who are facing difficult decisions about their loved ones. She doesn't tell them what to do. She facilitates discussions and gives them options, and explains the new document:

If you're preparing your advance directive, here's what you can expect to think about:

€ Choose whether to prolong your life artificially - the new document adds "within the limits of acceptable health-care standards." It allows people to distinguish between terminal illness and permanent unconsciousness, which can occur separately, as well as posing several possible feeding-tube instructions.

"It's very clear that in some situations feeding makes someone worse," she said. "It's the way the body withdraws."

Theoretically, Wallington said, you can't really distinguish the ethical consequences of machinery that sustains different organ systems, from kidneys to digestion. But the fact is, she said, people are much more likely to withdraw dialysis than feeding tubes, even though the system has failed in both cases.

Nelson said it's because most people have grown up with a mother who said "You need to eat."

"That has been our whole approach to illness since we were (children)," he said.

So there's a special category in the new advance directive to talk about feeding tubes. You can choose to withhold a feeding tube, to allow it only if there's a chance of getting better.

"This is my choice," Wallington said. "I'm willing to try anything if I have a chance at getting better."

And you can, of course, choose to keep a feeding tube indefinitely.

"We're hoping very much that Mr. and Mrs. Schindler filled that out," she said, referring to Schiavo's parents, who attempted one last court appeal Wednesday to reinstate their dying daughter's tube.

A few other subtleties: Physicians have a lot of power. The definition of "terminal," Wallington said, is arguable. "Ethicists know all about gray, but they know very little about black and white." That's true in court, too.

The writers avoided the term "persistent vegetative state" because it is included in "unresponsiveness," which also covers states like comas with no apparent waking periods.

€ Women can choose what will happen if they're pregnant and unresponsive. The law already states that a living will doesn't kick in if it's feasible to bring the fetus to term. But women who didn't know may have had angst about signing a living will if they thought it might affect an unborn child.

Wallington noted that the clause affects patients in a very small window of time, because it's difficult to keep a fetus alive when the mother is unresponsive.

€ Choose your pain medications. "I would much rather be awake than pain-free," Wallington said. But in that case, the living will wouldn't have kicked in yet, she pointed out.

€ Choose what mental-health treatments you don't want, such as electroconvulsive therapy or specific drugs. Wallington said most people are likely to ignore the section, unless they have prior experience with the treatments.

€ Designate a primary physician. This confused some clients and lawyers, Wallington said. What if somebody names a primary physician who's not involved? Do you have to go find that person? The primary physician, it turns out, is the doctor dealing with the end-of-life situation.

When the state decides for you

Without a living will, who will make decisions for an unresponsive you?

The state recently defined legally how to choose a surrogate decision-maker.

The spouse is first in line. If there's no spouse, the state will look for adult children, parents, adult siblings and then a friend, in that order.

Terri Schiavo's husband, for example, would have precedence, according to Alaska law. If decision-making power falls to multiple people, like a group of adult children, the majority prevails. If there is no majority, the physician involved takes everybody's opinions into account and breaks the tie.

"Nowhere in there do they get to decide based on their own best interests," Wallington pointed out. Surrogates are there to stand in the shoes of a person.

She said she often hears people saying, "I know this is what he would have wanted, but I can't bear it," and must then counsel them otherwise.

It takes about six weeks to appoint a guardian, however. For an emergency, the court's response is to ask whether the person is in a safe environment, and tell the hospital to do what it needs to do.

"That leaves the hospital really hanging, and we just do the best we can," Wallington said. "We try real hard to find a surrogate."

Wallington's solution is to talk while you still can. Get your decision-maker's permission. Talk about the wishes and values that drove you to check the boxes the way you did. This will make it easier for the person to act on your behalf without feeling guilty. "Have the conversation," she said, over and over. "This piece of paper's only as good as the conversation you hold about it."

Contact Kate Golden at kate.golden@frontiersman.com.