Christianity Today magazine associate editor Jeff M. Sellers spoke about Schiavo's situation with John Kilner, president of the Center for Bioethics and Human Dignity.
What are the Christian ethical guidelines for deciding whether to remove the feeding/hydration tube from Terri Schiavo?
There are two important ethical considerations—the medical situation and the patient's wishes.
On the medical situation, the question is are we talking about something that can sustain a person's life; from a Christian perspective, that has to do with the sanctity of human life created in the image of God. That's something that we need to respect and protect. If we have technology that enables that life to continue, then that's a wonderful gift of God.
In the Schiavo case, there is a significant debate about whether or not there are any medical interventions available that would make a difference in her situation. It's clear that the feeding tube is making the difference between her being able to live or die, but there's another significant question: Is her condition truly a persistent vegetative state, or does she have what is sometimes termed a minimally conscious state, in which there's a greater likelihood that she could regain the ability to have more interaction with her environment? The only way to answer that question would be to actually use the therapies that are available to make a difference.
The original lawsuit many years ago, after this brain damage occurred, the husband, Michael, sued for malpractice in terms of the way the case was handled and he won an award, a portion of which went to him personally. But the major portion went into an account to pay for therapy. So it was thought that she was in a state where some therapies could make a difference. They would be expensive and they needed funding for it, but the funding was awarded.
Ever since then, though, he started saying, "Well, she wouldn't want to continue to live." So those therapeutic interventions were not tried. And so now we have legal experts on both sides—some saying she's in a persistent vegetative state and nothing can be done, and others saying "No, she's not, and certain interventions can make a difference."
Ethically speaking, to be able to speak to that issue we needed more information. It would be much better to actually try the therapies for a period of time so that we could answer that question: What is the medical state here, and is there something that medicine can do even beyond the feeding tube to help restore her?
The ethical problem here is that it used to be that once you started somebody on something, you couldn't stop it. So there was a real concern that "we better not start something, because we'll never be able to withdraw her from this intervention if we do." But we've come to recognize more recently that it's not the case that once you start something you can't ever stop it. In fact, if you really don't know whether it's going to work, it's more ethical to try it for a period of time and then be willing to stop it if it's showing no benefit.
So on the first of the two key ethical issues—what's the medical situation, and is there some benefit that can be gained for medical intervention—there is uncertainty. There are experts on both sides. The ethical thing would have been to try the therapies for which the money was awarded originally and be able to answer definitively whether she could benefit from treatment or not.
Before we go to the second point, what if the therapies were tried and it was determined that she would always remain in a persistent vegetative state?
Then you have to place the situation in the context of our criteria for definitions of life and death. Right now the definition of death is what is referred to as a whole brain death. That means the entire brain, not just the upper brain that controls consciousness, needs to be dead. That means that she legally she's an alive human being, so you do have treatment. To withhold the feeding tube is to intend her death.
The governing ethical criteria are that it's inappropriate to intend someone's death. All the biblical injunctions that support life would be relative here, meaning that our intention should be to support and sustain life. That's what distinguishes this case, from the many other cases that many other people are familiar with—these end-of-life cases like the classic [Karen Ann] Quinlan and [Nancy] Cruzan cases. These cases are about establishing a person's right to say no to life-sustaining treatment, or various where people are in a deteriorating condition and they're going to die soon anyway whether or not you continue all the technologies.
So the ethics changes. You have to decide whether various technologies will make that dying process better or worse, and it is possible that artificial nutrition and hydration would add to the burden of that dying process.
That is not the case with Terri Schiavo. She is medically sound, medically healthy apart from her mental disability. If she continues to have this feeding tube, she could continue to live. She's just at the low end of the quality of life scale.
We're in a very dangerous situation if we start looking at people and saying, "Well, how low are they in the quality of life scale? She's so low we're going to consider that a life not worth living." It's hugely significant that in the legal case in Florida on this, 17 national disability groups all weighed in on the side of maintaining her feeding tube. What they all said, looking out from the inside, was "This doesn't look like it may look to you on the outside. This isn't about our being able to assert our right to die. This is about not looking at somebody who has not expressed a clear statement of their wishes that they don't want treatment and assuming that because they're so low on the quality of life scale that they shouldn't be allowed to live." That's just a bad way to look at human beings.
If Terri Schiavo had made it clear that she did not want the feeding tube if she were in a vegetative state, would it be ethical to remove it?
You'd have to answer that from a double perspective. You'd have to say, "Would that be an ethical decision from a Christian perspective to make, and would that be a decision that we would need to respect and honor?" It would not be the most ethical decision to make. But if the person made that, we would need to respect and honor it.
It would be appropriate for us to respect and follow that decision. You'd have to say, "What are the alternatives here?" as opposed to forcing something on them against their will.
But it's really important to hold those two things together because it's so easy just to answer that question by saying, "Yes, if they clearly stated that's what they wanted then that would be the right thing to do," because that doesn't make it the right thing to do. But it is appropriate for us to honor their wishes even though it's the wrong thing to do, because the person has responsibility for what can be inflicted on their body.
But if we don't hold the two things together, then you get a situation in which we say, "Okay, well, it's just up to the patient, whatever they want in any of these situations." As soon as somebody says, "I don't want the feeding tube, or if I became really compromised I don't want to be put on a ventilator," that can so often be merely an expression of them not wanting to be a burden to others. Our appropriate response as Christians to that needs to be, "Well, wait a minute, tell me about that—why wouldn't you want to do that? Your life is precious before God and precious to other people. And we want to be there for you and provide the support you need."
In many situations that will result in a change of what they would want to have. And how sad if we just readily go along with an expression of somebody wanting to forego treatment without probing that, without making out concern and support for them known. Because it just confirms their worst fears that nobody does care for them and they're not worth it.
So you just kind of hold those two things together: We have to honor somebody's wishes to refuse life-sustaining treatment, but we need to do everything possible to help them see that their life really is important and significant and that we're willing to care for them.
So there were no ethical grounds for withdrawing the feeding tube and hydration?
Given her medical condition, that's right. But there's a more widely acceptable medical standard here involved before you even come to that. If we were to be able to keep her alive to try the therapies first, then we'd have to deal with the feeding tube issue ultimately if the therapies wouldn't make any difference.
There's even broader support for keeping somebody alive if they might be able to be responsive existing therapies.
How to apply to Schiavo's case your second criterion—the patient's wishes?
There are strong grounds on a biblical Christian basis—also supported, interestingly enough, by most in society at large—that responsibility for deciding belongs to the patient. We have responsibility for the major decisions that affect our lives, and God has created the world in a way that this applies not only to decisions about our life in this world, but even the greater decision about our life eternally. God has given us a responsibility to make a decision about whether we will have life and have it eternally by choosing to follow Jesus Christ and commit our life to him, or not.
This is different from a worldly ethic, which is kind of a postmodern autonomy ethic saying that whatever you decide is right for you—that it is right simply because you've decided it. The biblical perspective says you've got the responsibility for making a decision, but that doesn't make it right.
Others who are more in touch with a godly perspective, which ultimately is the most life affirming and healthy way to go, should, when somebody is making a wrong decision, should try to persuade them otherwise. And this is as true if they're not choosing eternal life with Jesus Christ as it is if they're not choosing to continue their life when life-sustaining treatment is available for them. But we have to recognize that the decision is the responsibility of that person. And they're not to be forced against their wishes if they don't want to have that life-sustaining treatment.
The implications of that is that if we knew Terri Schiavo's wishes, those should be respected. A Christian could support that as well as others in society. But we're dealing with a situation here where there is significant debate over what her wishes were. One of the lessons of this case is how much better it would have been if only she had completed an advance directive, if only she had make it clear in writing whom she wanted to make the decision for her and what her wishes were. But she didn't. I mean we can learn about that and be more proactive now in doing that ourselves. Our center has developed a kit to help people do that.
But since Schiavo did not make a living will, then you have to have some pecking order, so to speak. Many states have passed laws that are explicit about this, and usually at the top of the list is the spouse. But there needs to be protections for the individual. It's always possible that you have an exceptional case where the normal presumption doesn't apply, where there's a conflict of interest that renders somebody inappropriate even though that type of person would normally be appropriate.
That's what courts and laws are for—to provide protections for exceptional cases. And this is a classic case of that. The major conflicts of interest you could have are money and sex, or money and personal relationships. The strong reason why the spouse is normally the person to turn to is because they're devoted to them more than to any other person, and clearly, therefore, will act in that person's best interest. But in the Schiavo case, right from the beginning, once there is this huge financial award (from the malpractice suit) for her care put aside, that's the first point at which he began saying, "Oh she wouldn't want to continue to live," and of course all the money would pass to him.
Then he took up a relationship with another woman and has had two children by her. And this is just simply not the normal relationship to the patient that the spouse would usually be.
The implications is that the most ethical way of dealing with the situation would be for the court to appoint a truly objective person to be able to assess the evidence and make the judgment about her wishes or at least her best interests. The husband is manifestly not in a position to do that because of these conflicts of interest.
Would a truly objective person be better than the next person in the pecking order?
Yea, I think so under these circumstances, because you've got conflicting claims based on hearsay evidence. And it's become a very polarized situation with some family members lining up on one side, and some family members lining up on the other. You certainly could go down the pecking order—typically a parent and/or sibling. Often it goes to parents first if they're still with decision-making capacity. And then to siblings. But in this particular case, that's certainly not going to be a very effective resolution because this has become so politicized, where there's far more at stake. Relatives are far more committed on record to a certain position.
From the court's perspective, that's not going to provide a good public resolution to this case. You really need a guardian that the court would appoint that truly doesn't have any vested interest in this case.
Who would that person be?
It could be somebody in social services who has enough familiarity with the medical issues and has experience in working on behalf of people who are unable to care for themselves or provide for themselves.
This person actually becomes an advocate for this person. I mean it's not neutral in the sense of they're neutral between her husband and the parents. Rather, this is somebody who is there to be an advocate for her and is experienced assessing what would genuinely be in her best interest. And what evidence is plausible as to any express wishes that she had or hadn't had. It would be somebody who understands the family dynamics and the conflicts of interest with the people involved.
Shouldn't we distinguish between medical treatment and basic care, such as food and hydration?
Well there's definitely a difference between basic care, and medical treatment. There are a number of different things that we need to have and it would always be wrong to do anything to prevent people from being able to take in air, to take in food or to take in water.
When the body begins breaking down and we're no longer able to do that, then there are medical means: a ventilator for air, a feeding tube or IVs for nutrition. Normally that would be appropriate until somebody is in the process of dying, and then we're not going to want to do anything that's going to make their dying worse or more burdensome. Just like we wouldn't force food down somebody's throat and cause them to die in the process. We would do anything that would be helpful and beneficial to them even in the dying process.
Right now we have to be just a little more careful about sweeping statements about what we would do with nutrition and hydration. There are medical circumstances in a final dying process in which it's not automatic that you do everything possible to put in the fluid and hydration. Even the Pope's pronouncements on these things have reflected that nuancing.
But that's very different from a situation like Schiavo's, where it's required to live and the person can continue to live for a long time.
Is the burden to the family a legitimate ethical consideration?
Certainly not in this case, if we're talking about whether there is cost involved, because where there is anything that's needed in terms of the finances or the actual care giving, people are available to provide.
The person who is saying we need to withhold the feeding tube, which would be Michael, the husband—is there a genuine concern about whether it's just going to be too burdensome to him? No, that's not relevant in this situation because there is ample support, both financially and humanly speaking, to be able to provide all the care that's needed.
In another situation where there are burdens that this creates, we should try to find the support that people need in order to carry on rather than a rationale for not sustaining the life. It's too easy to lightly invoke the notion that this is going to be hard, so therefore we let the person die. There are two needs there: the need of the patient to live, and the need of the family not to be overly burdened. So let's try to meet both the needs rather than get rid of the problem by getting rid of the patient.
That's a really important mandate for Christians, because it's also easy in these end-of-life situations to simply respond to them with a "No." No assisted suicide, no withholding of treatment, that settles it. We settle the ethical issue, we don't even talk about it anymore. And essential in any of these situation needs to be "What are the needs of the people involved in this situation, and secondly, how can they best and ethically be met?"
So you never stop your ethical analysis just by saying X is wrong or X we shouldn't do, because you've always got issues not only related to the patient but issues related to the family. And those need to be addressed as well. That's the dynamic of the situation, but it's not a reason to not continue to support the patient and their life.
Does your approach differ from the Catholic theology on these issues?
The approach at the Center of Bioethics and Human Dignity is biblically based and in harmony with the Catholic position. The first criterion of the medical indications to determine use of interventions that are supportive of life is rooted biblically in human life created in the image of God.
You can go back to the early chapters of Genesis on that, then you can note in Genesis 9:6 that what's wrong with ending life is that it destroys the image of God.
Life is precious, created in God's image. We don't want any harm to come to that image. You also have very powerful statements in Scripture like Deuteronomy 13 that say, really in the larger sweep of things, we have many important choices to make about whether we are choosing life or choosing death. People who follow God are to walk in the way of life.
While life certainly in biblical perspective means more than just a material, physical sense, it very much includes the material, physical sense. So it's a holistic orientation on behalf of life. So because of what human life is and because of the mandate to uphold and choose life, where we have the means to do that, we should do that.
On the second criterion of the patient's responsibility and the patient's wishes being important, there you would want to look at where responsibility lies biblically for the major decisions that affect our life. And while we can very much say there's a right choice to make, the responsibility for that choice does rest on people.
Some are saying that when you take away the nutrition tube, the patient doesn't necessarily suffer in dying from lack of food and water. Is that true?
Actually it can go either way. There have been studies, there's a study in the New England Journal of Medicine that looked at situations where that removal of nutrition hydration was done by well-trained hospices that could minister to the symptoms. You know, one of the greatest problems is where one experiences discomfort and pain is in the drying of the mouth. That's something that can be attended to in the dying process.
What that study showed was that in the majority of cases, if it was well-managed with the best that we know about this, that a person could be supported through a dying process and not experience significant suffering. But in a significant number of cases they did experience significant suffering in the process.
So to be careful about this, we wouldn't just simply make a sweeping statement that to forego this is to subject somebody to a horrendous, suffering death. But on the other hand, it would not be accurate either to say that it wouldn't subject one to a death of substantial suffering. We'd have to say that it might or it might not based upon the range of experiences that people have had.
Even if you acknowledge that in the majority of cases there would not be substantial suffering, documented experience shows that nevertheless in some cases it will. There's no way to predict with assurance what would be the case in this situation.
So all you can say is that she might experience significant suffering in this process, and there's no way to ensure against that.
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More news and opinion on this and other end of life issues is available on out Terri Schiavo page.
The Center for Bioethics and Human Dignity offers advice and Advance Directive Forms for those interested in creating a living will.
Earlier CT coverage of Terri Schiavo include:
My Last Visit with Terri Schiavo | If only Terry could say 'I want to live,' this whole thing could be over, says a lawyer for the Schindlers (Mar. 24, 2005)
Stay of Execution | Judge allows Terri Schiavo to live a few days longer. (Feb. 24, 2005)
Reprieve for Brain-Damaged Woman | But Christian activists say the fight to protect the disabled is far from over. (Nov. 25, 2003)
Not a Mercy but a Sin | The modern push for euthanasia is a push against a two-millennia-old Christian tradition (Oct. 31, 2003)
Why I Believe in Divorce | A disabled Florida woman's only hope to stay on life support is to divorce her husband who wants to pull the plug. (Oct. 16, 2003)
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