Tuesday, March 22, 2005

Death isn’t always The Ultimate Enemy

In extraordinary session in the wee hours last Monday, Congress passed a bill to give jurisdiction over Terri Schiavo's life to the federal courts. That move trumped two decisions by the U.S. Supreme Court to decline launching a new round of inquiries into the medical and legal questions surrounding her.

Mrs. Schiavo suffered massive brain damage 15 years ago when, at the age of 26, her heart stopped beating. That event left her brain deprived of oxygen for an extended period. Since 1990, she has been in what medical literature calls a "persistent vegetative state" (PVS). Higher brain function has ceased, and a CAT scan more than two years ago documented the atrophy of her cerebral cortex.

PVS is not a diagnosis created for Mrs. Schiavo but has been used for years to identify persons with severe neurological impairment. Some diseases and accidents leave patients comatose and essentially non-responsive. Other patients, such as Mrs. Schiavo, are not comatose but may spontaneously move their limbs, experience wake-sleep cycles, and make sounds. Their eyes may open in response to external events.

PVS persons may occasionally grimace, cry, or laugh. As with coma patients, however, there is no cognitive engagement of their environment. People who have no experience with such persons – and persons with emotional attachments to them – typically find it difficult to accept that he or she lacks the ability for rational thought or conscious expression. Random moves and noises or responses to external stimuli are counted as signs the person is "still there."

Because there is no single, unquestioned quantitative test for PVS (e.g., brain scan, EEG, etc.), the diagnosis is typically made over a period of time during which a patient is observed carefully. The classic legal and ethical case of PVS is Karen Anne Quinlan. Long-term preservation of these persons may involve a range of interventions from hydration and feeding tubes to breathing devices to electrical stimulation of heartbeat.

I have had the experience of counseling many individuals and families through the agonizing process of deciding whether to extend or terminate life support for PVS patients. In some cases, the persons have been older and had suffered major strokes. In others, the victims had sustained major brain trauma from vehicle accidents, blunt-force assault, or gunshot wounds.

I have also had the personal experience of making the decision not to hydrate or feed a woman whose degenerative brain disease finally made it impossible for her to think, recognize people, or communicate. The decision was filled with the same angst everyone has felt when faced with a pull-the-plug decision about life support. That patient was my mother.

As with most people in their twenties, Mrs. Schiavo had not documented her wishes not to be kept alive under the present circumstances. Her husband, Michael, says she communicated her wishes to him more than once. But her parents refuse to accept his account. Seven years and 19 judges into their bitter family wrangling, the judicial system said it is acceptable to discontinue life support and to remove the feeding tube that has been keeping Mrs. Schiavo's body functioning.

Not only has the Florida legislature substituted its judgment for the process that has been playing out, but now the U.S. Congress has acted in similar fashion. Ironically, a coalition of conservative religio-political groups has pushed for this intervention – after howling for years about the dangers inherent when lawmakers take it on themselves to intervene on organ donation, abortion rights, or what constitutes appropriate medical treatment for a terminally ill child.

The long-standing ethical principle of patient autonomy has been stood on its head by all this. The propriety of medical decision-making repeatedly affirmed by state and federal courts has been set aside. And there is certainly no good reason to think the Schiavo case will not be copied by other conflicted families, bright lawyers, publicity-seeking politicians, and money-raising preachers.

Not only physicians but the rest of us are smart enough to know the difference between protecting, enhancing, and empowering a human life with reasonable hope of recovery and merely prolonging the process of dying. Skill and technology that do the former are admirable and ethical; the same skill and technology used for the latter are unnecessary and ill-advised.

Death is not always The Ultimate Enemy and is not always to be resisted. The real enemies to the patient are disease, trauma, degeneration, and pointless pain. Proxy decision-makers are able to take these things into account in a way persons in a persistent vegetative state cannot. The emotional grasping for straws that happens with a mother or son or sibling attending someone in PVS does not change the awful reality at hand.

Maybe a key issue here is our common insensitivity that fails to see that what is best possible treatment for a person lacking higher brain function is not always the most treatment possible. The idea that an emotional observer’s faint hope of another's recovery can trump peer-reviewed medical judgment under extensive court scrutiny over years is irresponsible.
Death is sometimes an ally instead of an enemy. Perhaps death itself needs to be reconsidered by all of us. It is not an absolute evil. It is sometimes an instrumental good for those without reasonable hope of recovery. Sometimes the real evil lies in forcing someone to endure existence that is no longer really life.

Regardless of your take on this controversial case, your most responsible personal reaction to it is to document your own wishes about end-of-life decisions and then to share it with those closest to you.

(Rubel Shelly holds a doctorate in philosophy from Vanderbilt University and teaches and writes in the field of medical ethics.)

5 comments:

Milton Stanley said...

"Rubel Shelly holds a doctorate in philosophy from Vanderbilt University and teaches and writes in the field of medical ethics."

And yet . . . the esteemed Dr. Shelly is wrong.

Greg Taylor said...

Dear Milton,
Your opinion and those of all visiting this blog are welcome. One ground rule of our blog, however, is that we share reasons for our opinions, doing that with respect. Can you honestly say you've respectfully given reasons that you disagree with Dr. Shelly? Please explain more about your comment.
Thank you,
Greg Taylor
managing editor
NEW Wineskins magazine

Milton Stanley said...

God has allowed all humanity to live despite the amount of trouble we are to him. And he went to extremes to offer us eternal life despite our best efforts to choose death.

Terri Schiavo has value, no matter how damaged she is, because she's formed in the image of God. What's more, our lives don't belong to us; they belong to God. We don't any more have the right to choose the time of our death than to choose the time of our birth. And we cannot delegate to family members a right that we ourselves do not hold.

Depriving someone of food and water to the point of death is murder, pure and simple.

Matt Tapie said...

Welcoming death, as Rubel has recommended, is very different than expediting death. I believe welcoming death is definitely something Christians should do--we should all have the theological attitude that says: I do not fear death since Christ has conquered the grave. This, though, is very different than bringing about death, or initiating death, or facilitating death, or to put it more harshly, murdering. To bring death upon someone who is living is to kill them; to take away their life. Do we have such authority? I do not think we do.

Human life is a gift from God. Because we are made in his image we are precious--we are "sacred" because of our Godlikeness and taking life is literally an attack on God the owner of life. A person's physical condition does not change this fact. The value of life comes from its intrinsic worth, not the "quality" another human being ascribes to it. Human suffering, disabilities, lack of consciousness, vegetative states, mental retardation, etc. do not take away from the eternal God-assigned value of a weak person's life. Just because someone is weak and dependent does not mean they are no longer human as Rubell's article suggests: "...evil lies in forcing someone to endure existence that is no longer really life." I believe evil lies in identifying a person as not human. No longer "really life"? One cannot look at another's life and decide, based upon their opinion of what life should be like, that such a human life is not a "quality life" or that it is not worth living.

Advocates for the removal of Schiavo's feeding tube say that in her last hours of starvation she will die with dignity. But what is dignity? Dignity is defined traditionally as nobility, moral excellence, or moral virtue. You don't have a right to dignity any more than you have a right to beauty. Dignity is built up from moral choices--it comes from character; it comes from within. Dying with dignity should mean to the Christian person that we welcome and embrace death the way our Lord faced it. Dignity, or moral excellence, should not be twisted to endorse our asking someone else to take our life (euthanasia) or any attempt to take it ourselves (suicide). But do those who believe Terri's feeding tube should be pulled really want dignity for her?

I think underneath the talk about dying with dignity, patients rights, and a right to die, there is a deeper assumption about Terri's mental health. Some believe that since she is unconscious her life is not worth living. Her mental state makes her life, in the words of Rubel Shelly, "no longer really life." However, regardless of her mental state this women is living and not dying. No matter if you wouldn't want to be her, she is still a human life. She has no terminal disease. Death was not knocking on the door of her life until it was ordered there by judges. The feeding tube that sustains her is like a spoon to the mouth of an infant. But this is unconvincing to many. As William Luse has written, many think Terri Schiavo is "as good as dead," so it does not matter much to kill her.

I leave you with a quote from Luse's article entilted, "Let Live or Make Die: Terri Schiavo, Christopher Reeve & the Right Not to Be Killed."* Luse writes,

"She is not dying, but living. She needs to be fed and that's all. This is a thing we do for each other. Her only problem--society's problem, actually--is that she is severely mentally retarded. She is not participating in the life of the world as others would like. Being alive is not enough. That you are human and in existence no longer grants you an inherent and infinitely precious worth."

*Touchstone Magazine March 2005

Jenifer Williams, Claremore OK said...

Most people who view the question as complex misunderstand one or both of two key questions: 1) the role of life support, and 2) the role of government.

1)Terri's case was not about life support. The court ordered her to die by natural starvation and natural dehydration (Circuit Court Pinella County 90-2908-GD-003, March 8 2005).

2)If one branch of government (judicial) is involved in a matter, the other two branches *must* involve themselves as well. If they do not, we lose our system of checks and balances.

Congress and the executive branch are Constitutionally equal to the U.S. Supreme Court, and they are sovereign over all other courts. In this case they failed
to meet their responsibility.

Worse, "we the people" are sovereign over all. We failed supremely.

Neither the National Organization for Women nor the Christian right-to-life organizations came forward to say that a man must not deny his wife a drink of water. Pinellas County prepared
for thousands of protesters. Only a handful arrived. Christians and feminists alike were AWOL, myself included. I am part of the murder in that:

"Whoever stands idly by without trying to prevent the death of Terri Schindler Schiavo becomes an accomplice to murder." (Cardinal Renato Martino, head of the Pontifical Council for Justice and Peace).

Jenifer Williams
Claremore, OK