When My Life Becomes a Burden: Updated Notes on a Living Will to be Shared With My Daughter

First United Methodist Church
Birmingham, Michigan
Scriptures: II Samuel 19:31-40, Ecclesiastes 12:1-5
April 24, 2005

There are some days when I survey the landscape of opinion and wonder if I believe anybody. And there are other days when I survey the landscape of opinion and find myself believing everybody. In part because, on some days, concerning some issues, it would seem as if everybody has a piece of the truth, but nobody has the entire truth. So I find myself swayed by the voice of the one who speaks loudest….or last.

Shortly after I came here, I told you about the Search Committee chairperson of a congregation looking for a new preacher. Soliciting opinions from the members, the chairperson was more than a little perplexed by a letter which began: “No matter what other criteria you establish, make certain you hire a preacher with only one arm.” Responding to the recommendation with a conversation, the chairperson asked: “So why do you think a one-armed preacher would do a better job?” “Because,” said the writer, “I’ve had it up to here with preachers who say ‘on the one hand,’ only to continue ‘but on the other hand.’ The way I figure, there won’t be any ‘other hand’ if there isn’t any other arm.”

While you’re pondering that, consider Terri Schiavo….dead, by virtue of a court-ordered removal of her feeding tube, after 15 years of living and lying in what most (though not all) termed a persistent vegetative state. Split down the middle was her family….each side claiming to know what she would or would not want. Split, too, down the middle was her country….each side claiming to know what should or should not be wanted.

As a Christian, I could argue that we must provide food and drink for Terri. For the provision of food and drink is as close as it gets to a bedrock level of caring….a level of caring that God commands and Jesus expects. Did not Jesus say (Matthew 25:25): “In as much as you gave food to the hungry and drink to the thirsty (especially to the least of these), you did it unto me.” And Terri Schiavo certainly qualifies as one of “the least of these.”

Concerning the provision of food and water, the Bible makes no distinctions about whether the person needing it is at home, in a hospital, or under the care of a hospice. Nor does the Bible distinguish between providing it in a cup, in a bowl, up a straw or through a tube. Even if you regard food and drink as medical treatment, it is really rather ordinary treatment. Not extraordinary treatment. Certainly not heroic treatment. Yes, to insert a tube is (to some degree) invasive. But minimally so. Not a significant burden, really. At least not a significant burden when the alternative is dying. And to an unconscious person like Terri, what’s a burden anyway? Especially when the benefit of the burden is life.

Sure, there are many who would say: “So what benefit is life to Terri?” But any failure to see life as good….any slippage in the idea that life is good….is to take the first step down a very slippery slope that reduces the body (a most wonderful thing, the body) to a mere container for what some would deem infinitely more valuable….the mind, the personality, the soul, and the web of relationships of which the body is a part. Such persons would suggest that when those other things go and only the container is left.…or when the “goodies” are gone and only the “box” they came in is left….one might as well trash the box or starve the body. That argument suggests that the body is life, but lesser life. And burdensome life. After all, look how much it costs to take care of the body….in terms of dollars….in terms of time….and in terms of other lives that can’t be gotten on with, as long as some “body” ties those other lives down.

But do we really want to start down that slope? The first step involves pulling the feeding tube from Terri. But a subsequent step might systematically starve all late-stage Alzheimer’s patients (“No mind….no personality….no relationship capacity….no food or water”).

An argument made thusly (especially in the absence of a clear directive) would say: “Keep feeding Terri.” After all, she qualifies as “the least of these.” Besides, giving food and drink to “the least of these” is the least we Christians are expected (yea, commanded) to do. And there are several things about that argument that are biblically and morally compelling.

Yet, as a Christian, I could also argue that we must withdraw tube-channeled nutrition and hydration from Terri. After all, nasal-gastric tubes, J tubes (tubes inserted directly into the intestine), even IV tubes are medical procedures. Granted, they may be minimally invasive. And when performed on a person who has been unconscious for 15 years, they may be minimally burdensome. But if we don’t insert them, she would die of natural causes.

Yes, Jesus did say something about the need to provide food and drink (implicitly suggesting that everybody has a right to food and drink). But, biblically considered, breath is backed by an even greater divine connection (“and God breathed into his nostrils the breath of life and the man became a living being,” Genesis 2:7). Yet would we argue with similar vehemence for the continuance of a ventilator or respirator? And if so, would we maintain it past the 15-year mark….or to the 15-year mark?

Yes, life is good, because life is of God. But life is not God. Life is not an equal God….an additional God….or a replacement for God. For Christians, life is important, but secondary. Christians put things in perspective when, concerning life, they say: “It is sinful to take it, but there are times when it is virtuous to give it.” Jesus gave his. Martyrs give theirs. And, said Jesus: “Blessed are you who are willing to lose yours….for my sake….for the Gospel’s sake…. even for the neighbor’s sake.” Were I to give up a kidney for my daughter….which, fortunately, was not needed, although an early scare with childhood nephritis raised a concern or two….I would not necessarily have signed a death warrant for myself. But I would clearly have said that there are some things (and some people) more important than my body. Yes, it is good. But it is not God. What’s more, while I believe in the resurrection of the body, I do not believe in the resurrection of this body. So while my body is more than a container….much, much more than a container….it is, nonetheless, disposable. While there were people in Jesus’ day (the Gnostics come quickly to mind) who made far too little of the body, there are people in our day who make far too much of the body.

Any argument made thusly would say: “Remove the tube and let Terri go.” Already a prisoner to her disease and debilitation, do not make her a prisoner of medical technology. And that, too, is an argument that is biblically and morally compelling.

Obviously, as a pastor I confront such questions monthly….occasionally, weekly. Reflecting upon twelve years of service in this community, I am prepared to make some general observations.

  • Most people I see….on this issue, anyway….lean moderately to the left.

  • Most people I see have living wills or verbal directives that are clearly understood by their family.

  • Most people I see have doctors who are more comfortable discussing (even introducing) end-of-life issues than they were thirty years ago.

  • Most people I see go to hospitals which will not initiate treatment without raising such issues and seeking, if not requiring, written documentation.

  • Most people I see view the hospice movement, the concept of “palliative care,” and terms like “a good death” as comfortably compatible with the will of God.

  • Most people I see face suffering bravely, but do not want it to go on interminably, either for themselves or their loved ones.

  • And most people I see view “becoming a burden” as a psychological and moral issue, more than an economic one. In other words, their question is not if they can afford to go on, but whether they have the desire or even the right to go on and on.

Frankly, I see few problems where there has been choice and communication….meaning self-made choice, followed by communication of that choice to others (clearly, early and repeatedly). When the issues are never discussed….the choices never communicated….the papers never signed….that’s when the problems begin.

What do I believe? I believe that there is truth in both positions. I believe that, given advances in medical technology, there is an increasingly-fine line between “taking someone out” and “letting someone go”….and, though the phrase will probably sound inflammatory, “between murder and mercy.” I’ve met any number of people who viewed Clint Eastwood’s film, Million Dollar Baby (myself among them). Most loved it. Virtually everybody cried at the end of it. A minority (albeit a very vocal minority) were offended by females boxing in it. But except for me, I didn’t hear anybody else in this community say: “You know, after he put her out of her misery, he was probably arrested within 24 hours and charged with murder.” Correctly, it would seem, even though the action that resulted in her death was viewed most sympathetically. Like I said, there is an increasingly-fine line between murder and mercy.

I further believe that the dominant background color for this discussion is now (and, for some time, will continue to be) the color gray. I know that those of you who like to view things as being black and white, hate it when I say that. But, in this arena, there are few answers that are easy, and fewer that come clearly labeled as “right” and “wrong.” Rather, there are situations “where multiple goods collide and cannot all be chosen, and where multiple evils gather and cannot all be avoided” (Allen Verhey). Which is why, after helping people make hard choices….really hard choices….I have sometimes prayed:

O God, we trust that what we have done is good, right and in keeping with your will. Whatever be the case, know that we have chosen humbly, acting out of love and duty as we understand it….leaning on your mercy and trusting in your forgiveness in the days and weeks to come.

Finally, I believe that death (as an enemy) is grossly overrated. Which means that I do not believe we need to use all our weapons (i.e. feeding tubes) or all our resources (i.e. dollars) in fighting it. Victories over death have more to do with resurrection than resuscitation. For when you think about it, everybody Jesus healed died, eventually. So when Paul said, “Though my outer nature be wasting away (and I am never sure if Paul spelled that ‘wasting’ or ‘waisting’), my inner nature is being renewed day by day,” he was talking about the one kind of victory….maybe the only kind of victory….you can’t get from a Beaumont doctor.

* * * * *

Barzillai (the Gileadite) had curried the favor of King David. Who wanted to reward him. And who wanted to provide for him. But in declining David’s gracious offer, Barzillai said:

Look, I’m old. I’m eighty. How many years are left in front of me? My usefulness is declining.

Can I discern what is pleasant from what is not?

Can I taste what I eat or what I drink?

Can I listen to the voices of singing men or singing women?

Why should I be a burden to you, O King? Let me die in my own city, near the grave of my mother and my father.

* * * * *

Julie, dear daughter, I stand by everything I wrote and preached on September 14, 1996, including this:

I would rather be connected to people than machines. The saddest thing about many of the nursing homes I enter is the way in which the residents withdraw from the world around them. Even those with the capacity to know better allow their worlds to become smaller and smaller, until there is scarcely any world at all. I abhor the thought. So I trust you will fight to keep me in touch with who the president is, what the bishop is doing, and whether the Tigers are winning….not to mention the situation of the man in the next bed, the lady across the dinner table, or the aide who comes to bring me my medications. And if, pray tell, my conversation ever becomes reduced to an enumeration of my bodily functions….how often I go….how easily I go….or my concerns about going or not going….I trust that you will verbally slap me silly and tell me, in spite of the fact that I am your father, to “get a life.”

So when the possibilities for “people connections” are gone, for God’s sake….and for my own….don’t keep me connected to anything mechanical or tubular. I do not find anywhere in the Bible where biological life is celebrated for its own sake. Considered biblically, the idea of creation means nothing apart from the idea of covenant. I take this to mean that life derives its primary meaning (and perhaps its only meaning) from relationships. Therefore, when connections with people slip from me (and there is little likelihood of their return), don’t connect me to anything else, either.

Fortunately, I can still discern what is pleasant from what is not. I can still taste what I eat and what I drink. I can still appreciate the voices of singing men and singing women. And I trust, continue to be more blessing than burden.

But such will not always be so. When it changes, let me go. As another preacher wrote:

There is a time to be born and a time to die.

A time to keep and time to lose.

A time to embrace and a time to refrain from embracing.

A time to speak and a time to butt out.

But death, which is my biological imperative, is also my theological opportunity. Maybe even my heavenly ministry. Jesus said: “Bill, I’ll go get your room ready.” So the least I can do….or maybe the best I can do….is do the same for you. It is the way of life. It is the way of faith. And it is the way of the Lord. But until then, save me a polka. And I promise not to say anything more about grandchildren.

Note: Having read voluminous editorials and essays about the Terri Schiavo case, I found myself best instructed by Allen Verhey who teaches at Duke Divinity School and recently authored Reading the Bible in the Strange World of Medicine. His Christian Century essay, “Necessary Decisions,” provided the structure that I adapted for this sermon.

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