May 1, 2005, Crestwood UCC

I Pet. 1: 22-25; John 16:16-24

Last week, I asked you to begin thinking about what it is that gives human life value. A rather challenging assignment, I admit! And I told you I’d be talking about the Terri Schiavo case today. Terri Schiavo was the woman whose parents and husband were locked in a legal battle over whether or not to remove her feeding tube, which had been keeping her alive for many years. Ms. Schiavo was not able to swallow food because of irreparable brain damage she suffered 15 years ago when her heart stopped beating temporarily, ironically as a result of an eating disorder called bulimia.

The parents insisted that her feeding tube should be left in place, and that to remove it would be killing her. But her husband wanted the feeding tube removed, not only because he had the legal right to make the decision for her, but also because she had once told him that she would not want to be kept artificially alive, hooked up to a lot of tubes and machines. After a long series of court battles, the governor of Florida got involved in the case, and eventually so did Congress, the media and inevitably the tabloids. In the end, the courts sided with the husband, and last month,13 days after the removal of the feeding tube, Terry Shiavo’s body finally died, 15 years after most of her brain died.

This controversy has been on my mind lately, in part because my friend and mentor, Dr. Stan Grenz died of a massive brain hemorrhage on March 12. I was his teaching assistant in theology and ethics, so one of the subjects we covered was ethical issues at the end-of-life. I wonder--what if Stan had survived that brain bleed—what if his body was in a permanent vegetative state, with no evidence of higher cortical function, would he have wanted to be kept artificially alive? Stan had a very high regard for the sanctity of life; would he have felt a responsibility to preserve life with every means available?

It is likely that at least some of you will face a choices like this someday; maybe you’d just as soon wait until then to think about these things. The trouble is, it’s very hard to make these decisions when you are grief stricken and distressed. Shock can affect our ability to reason and sort through complex issues. We are much more capable of doing so in advance, so today I want to examine 3 main issues that can help you make these ethical decisions.

The first issue is one of definition: how do we define life and how do we define death? Terri Schiavo’s brain scans showed severe atrophy of both cerebral hemispheres, and a flat electroencephalogram. At every stage of the legal proceedings, courts ruled that by the standard of "clear and convincing" evidence, the diagnosis of persistent vegetative state was warranted. A persistent vegetative state includes periods of wakefulness, alternating with sleep, some reflexive responses to light and noise, and some basic gag and swallowing responses, but no signs of emotion, willful activity, or cognition. Her appearance did not show the extent of her brain damage, which may be why people seeing her, but not examining her, believed her to be far higher functioning than the raft of neurologists who actually examined her.

Part of the problem is this: even though the medical field recognizes the reality of brain death, we still cling to the idea of death as the point at which all biological activity ceases. In other words, some people thought of Terri as still alive, and the removal of the feeding tube as a shortening of her life. Others thought of Terri as no longer alive, because of a nearly complete absence of brain function, and they saw her death as being prolonged by the maintenance of a meaningless heartbeat in an assemblage of organs, tissues, and protoplasm.

Both sides had their religious experts. Some pastors, rabbis, imams and priests wanted the feeding tube to stay put. They said Life is sacred. We don’t get to choose the quality of life, even when it’s difficult to live, it’s not up to us to decide when life ends…we’re not guaranteed a life without pain. Only God can decide when death should occur.

But other pastors, rabbis, imams and priests gave the opposite advice. They recommended removal of the feeding tube, saying Life is sacred, and death is part of God’s plan for life. We would never hasten death, but we should allow it to occur naturally…we’re interfering with God with all these tubes. People have a right to die in dignity, the right not to be kept alive indefinitely by artificial means.

Was Terri Schiavo more alive …or was she more dead? We no longer have a simple definition of life or death.

This brings us to the second issue: there is a moral distinction to be made between "killing" and "allowing to die." Let me give you an example: a young woman, in her early 20’s, whose wedding I performed, was diagnosed with stage four uterine cancer before her wedding. She was given a very poor prognosis, but she fought the cancer for over 4 years, undergoing extensive surgeries, and almost continuous chemotherapy all of that time. I have never seen anyone fight cancer as hard as she did. But finally, at the very end, when there was almost nothing left of her, finally she stopped chemotherapy that might have extended her life of constant pain for a few more weeks or days. What good would that have been to anyone when there was absolutely no hope of recovery? She did not choose death nor did she cause her own death, she simply stopped resisting it and allowed death to happen. Would anyone of us have questioned her right to stop? At that point she was barely alive, and treatment seemed more like an extension of dying than an extension of living.

In the early years after his wife’s collapse, Michael Schiavo went back to school for nurse’s training so he could care for his wife. He had tried every kind of therapy; he had moved his wife across the country at one point for experimental treatments and had exhausted every possible treatment without any improvement whatever. He finally said, "Enough, no more treatment, let nature take its course."

However, Terri’s parents are Catholic, and Catholic theology takes a specific stand when it comes to feeding tubes. Former Pope John Paul II and several prominent Catholic ethicists have recently suggested that feeding tubes should be provided to people who are, as Schiavo was, in a "persistent vegetative state." These theologians make a distinction between "ordinary" and "extraordinary" treatment. They say that people may choose, for example, to turn off respirators and a heart-lung machine, they may choose to stop chemotherapy, because these are extraordinary means. Extraordinary treatment refers to painful or burdensome treatments unlikely to improve a patient’s life. But providing food and water, even through a tube inserted into the stomach or intestine, they say, is an ordinary form of care. From this perspective, removing a feeding tube is an act of murder by omission, not an act of "allowing to die."

On the other side of the debate we have a large number of Catholic and Protestant ethicists who disagree with the late Pope’s view, claiming that a feeding tube is no less artificial than say— a respirator. They ask, What would make the tube less artificial than any other device? When you think about it, before feeding tubes were invented, for thousands of years people died when they were no longer able to eat. The Supreme Court agreed; they ruled that feeding tubes are medical treatment just like respirators, heart-lung machines, dialysis, antibiotics and chemotherapy.

And so we are stalled again: one group says you interrupt life by withholding food through a tube. The other group says you already interrupted death by putting the feeding tube in, in the first place. One group says removal of the tube is "killing"—the other group says it is "allowing to die."

The third issue is who gets to make these complex end-of-life decisions? The current legal and ethical principles by which decisions are made in this country are based on an individual’s right to decide for themselves. Doctors and clergy all over the country are telling folks to fill out an advance directive no matter how old you are. Terri Shiavo was 26 when her bulimia caused her heart to stop long enough to severely damage her brain. She was 41 when she finally died, or finished dying, depending on how you see it. Tell the people around you what you want and fill out an advance directive for your family’s sake in order to spare them the painful decision-making.

If you do not have an advance directive, the law follows the principle of substituted judgment, i.e. the closest relative is allowed to say what the patient herself would want. The closest relative is not supposed to decide what is best for the family but what the patient would want, i.e. if the patient could wake up and be fully aware for 15 minutes—what would she tell you she wants? The right to decide belongs first to the patient’s spouse; if a spouse cannot speak for the patient, then it goes to one’s adult children, and finally to one’s parents and other relatives.

Our country’s legal and ethical principles, in the end, leave much of the end-of-life decision making to the individual. Consensus has been that a person has the right to refuse any and all medical care which they do not want. A Jehovah’s Witness has the right to refuse a blood transfusion and a fundamentalist has the right to choose prayer over treatment. This is an issue of personal beliefs and dignity.

Personally, I am glad that the courts have left end-of-life matters to the person or family to decide along with their doctors and clergy because no one can define with certainty the precise moment that life ends, anymore than one can define with certainty, the precise moment that life begins. Theologically there is no consensus. Last month some churches were praying for Terri Schiavo’s feeding tube to be reinserted, while three mainline denominations—including the United Methodists, Episcopalians and the UCC—have statements that generally recommend against extraordinary medical means to prolong life when it really amounts to prolonging the act of dying.

In a recent Newsweek editorial piece Anna Quindlen wrote: A raft of doctors said over the years that Terri…would never be more than the vessel in which her spirit once lived, like a music box that no longer plays…There are those of us who believe that under certain conditions the cruelest thing you can do to people you love is to force them to live. There are those of us who define living not by whether the heart beats and the lungs lift but whether the spirit is there, whether the music box plays. Anna Quindlen and her father both received an email from Anna’s sister recently. It said: I’m telling you both this now, if I am ever in a persistent vegetative state please let me die. Do not have a feeding tube put in me and in no uncertain terms: do not let the United States government get involved.

Ms. Quindlan commented: No public official is going to tell me how to love my sister….My sister’s throaty laugh, her prodigious knowledge of history, her garrulous nature: that’s the true picture of her, the one with the light in her eyes. She’s counting on me to make certain that her image is not replaced by something empty and depleted. She’s counting on me to safeguard her dignity and her humanity. Ms Quindlan, in her editorial, cited polls that showed that the majority of Americans believed Terri Schiavo should be allowed to die. She said, That’s probably because they’ve been there. They’ve been at the bedside, watching someone they love in agony as cancer nipped t the spine, as the chest rose and fell with the cruel mimicry of the respirator, as the music of personality dwindled to a single note and then fell silent. They know life when they see it, and they know it when it is gone.

That being said---in the end, Terri Schiavo’s parents still saw life when they looked at their daughter. They felt themselves to still be in relationship with her. When they refused to let her go, Michael Schiavo had 2 options—both bad. He could give them grace and defer to their wishes, leaving the feeding tube in place, knowing Terri had too little brain to even experience suffering. It would not be the death with dignity Terri wanted. But as soon as he saw the legal battle coming, he might have anticipated that a long, drawn-out legal fight would also rob her of a death with dignity, as her photograph with its blank stare became tabloid news. Either way her dignity and privacy were lost. I can’t help but wonder if Terri Shiavo would have preferred lying there another 15 years rather than cause such pain and controversy. The point is, we who are outside of that situation do not know enough of the details, nor of the woman Terri, to pass judgment on her family members.

As I think today about Stan, my theology professor friend who died last month, and whether or not he would have wanted to be kept "alive" with a feeding tube, I recall discussions we had about what it means to be made in the image of God. It means to be capable of relationship with God. If Stan’s brain hemorrhage had left him without the capacity to be in relationship with God or others or to comprehend the world around him, without hope of recovery, I think he would not have wanted such an existence. Just as our lives have value because God saw fit to create us, so perhaps our death has value as part of God’s creative cycle that we see in all the world around us…out of life, comes death, and out of death, new life. Perhaps we have been overly fearful of dying. I think Stan would have said, "I believe in the resurrection, I’m not afraid to go on to whatever’s next!"

If one day this decision is yours or mine to make for someone we love, I pray that we will know with some confidence what our loved ones want. So let us continue the conversations. Let us show respect for the ambiguity of death, just as we show respect for the ambiguity of life’s beginnings. Let us show respect for each other’s choices, and finally let us rest in the grace of God. Amen.