Dealers of Death

by Toni Collins

The story of Terri Schindler-Schiavo will break your heart. This poor woman collapsed in her Florida home some thirteen years ago and suffered severe brain damage. Ten years ago, a medical malpractice case awarded $750,000 for her rehabilitation. But her husband (and guardian) has since forbidden any attempts at rehabilitation. For years, Terri has been languishing while her husband seeks court approval to kill her. In fact, he’s spent over half her rehabilitation money paying attorneys in an attempt to starve and dehydrate Terri by removing her feeding tube. Her parents’ heroic determination to fight Mr. Schiavo has helped Terri survive two such attempts.

"Well," you might say, "I can understand that people wouldn’t want to be hooked up to machines indefinitely." That’s a reasonable position to take, and falls well within Catholic moral teaching. The Catechism of the Catholic Church states:

"Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of ‘over-zealous’ treatment. Here one does not will to cause death; one’s inability to impede it is merely accepted" (CCC 2277).

But Terri isn’t hooked up to "machines." She is simply fed through a low-tech device invented in the nineteenth century. After all, everyone needs food and water to survive.

Lately, Terri has become the cause cèlébre of the Right-To-Die movement and its leaders. The language they use is subtle, but the Right-To-Die marketers are masterful at using carefully tested language to lull the public into cooperation. And make no mistake, they’re using Terri to try to influence the general public into jumping on their bandwagon.

How so? Reporters not usually sympathetic to cases such as Terri’s are telling us that if only she had expressed her wishes in writing, she could be free from this contentious family squabbling. They sympathize that a woman who is so severely disabled should be forced to live against her wishes. (Their coverage is working, as evidenced by the Internet blogs and chat rooms calling for Terri’s "plug" to be "pulled.") And then these sympathetic, caring reporters urge us, their viewers, to fill out a "Living Will" so that we can avoid having our family fight like hers.

This sounds like such soothing advice. A family could have been saved ten years of turmoil if only Terri had written a "Living Will." A woman who would never have wanted to live "like that" could be set free from her plight. We have the right to make our medical decisions known in legally binding ways. Shouldn’t we all go out to our doctors and attorneys and let them know our wishes? It seems as though it could prevent so many problems.

But there’s a dirty little secret behind the soothing words. Visit your doctor or attorney, and they will not be neutral in discovering your "wishes." They’ll be moving you towards deciding when you should be killed—not if you will be killed.

This duplicity was manifested on the CBS News Sunday Morning show of November 9, 2003. Attorney Vincent Russo, a specialist in end-of-life issues, was featured saying, "Unfortunately, Terri, poor Terri, did not express herself in legal documents that would have avoided all of this." Doesn’t he sound sympathetic? We’re told Mr. Russo recommends that every adult, no matter how young, prepare a "Living Will." He assures us that this document allows people to declare what medical treatment they do or do not want. It sounds so reasonable.

But when this "Living Will" was briefly flashed on the television, its first line read: "[I] willfully and voluntarily make known my desire that my dying not be artificially prolonged." This supposed "Living Will" is a document allowing you to sign your own death warrant.

This is typical of Living Will practice. My personal doctor is required by California law to display a sign in his office advising us that "Advance Directive" forms are available. The introductory pages are upbeat and tell us that these forms "ensure you receive the care and services you desire," and the forms do leave adequate room for writing your wishes. But there is one and only one pre-written directive available for you to choose: "I do not want efforts made to prolong my life and I do not want life-sustaining treatment to be provided or continued" in case of irreversible coma, persistent vegetative state, terminal illness, or burdensome treatments which would outweigh the expected benefits,

Take note of certain omissions in this order to end your life. There is no timeframe for the coma or a definition of "irreversible," no request for therapy or treatment of the persistent vegetative state, no definition or prognosis for the terminal illness, and no hint of what constitutes burdensome treatments.

The pressure is subtle, but it’s there. The "Living Will" guides you towards determining the circumstances of your death. My husband and I have personal experience with this. When updating our wills, we sought out a good, Christian attorney. When she asked us about health care decisions, we explained that we had strong religious feelings against "pulling the plug." We were firm and clear. Fortunately, we also read the wills before we signed them. The section on health care decisions included the standard, boiler-plate language stating that we would not want our lives artificially prolonged. Needless to say, the documents had to be re-typed before we’d sign them.

If you approach your attorney, you might be directed to the on-line "Tool Kit" prepared by the American Bar Association’s Commission on Legal Problems of the Elderly. (Here’s an obvious prejudice: why are health-care issues classified as "legal problems"?) It claims to be designed to help you discover and clarify what is important to you in the face of serious illness. In reality, every section of the "Tool Kit" is geared towards helping you decide when you should die.

Some examples are in order. One "Tool" is titled, "Are Some Conditions Worse Than Death?" and proposes that you consider whether or not you’d want "treatments that might keep you alive" if you are faced with less-than-perfect health. The situations are not limited to ventilators, feeding tubes, or even wheelchairs. The "Tool" also asks whether you’d want to refuse life-saving treatments if "you spend all day at home," or "can no longer control your bladder." (Note to menopausal women: watch out!)

Another "Tool" suggests ten specific medical scenarios and asks you what your wishes would be if you were in these situations. What if chemotherapy would leave you nauseated for three months at a time? If your mind is fairly clear but you’ve had pneumonia four times, would you want antibiotics the next time? If dementia affected you about half the time, would you want both gangrenous legs amputated? These "Tools" sometimes depict gruesome medical situations few of us will ever see, yet encourage us toward choosing death.

Other "Tools" are presented in a more subtle fashion, asking you to identify your personal priorities and fears. Do you most love to be outdoors? Would you want to be sedated to control pain if it made you sleep too much? How would you like to plan the last week of your life? The implication of these "Tools" is that death might be preferable to any reduction in our current quality of life.

The problem with asking these questions of presumably healthy people is that we really don’t know the answers. In the hubris of youth or good health, we can’t imagine living in a nursing home. We can’t imagine wanting to be confined to a wheelchair. We can’t imagine losing our cognitive abilities, or breathing with a ventilator, or being fed through a tube. We think we wouldn’t want to live "like that."

But when we’re healthy, we can’t really know how we’ll feel when we’re "less than perfect." It is arrogant to even use such a phrase, for none of us is perfect, and all of us are less "perfect" than we were. To jump us into a far less "perfect" future and ask us what we’d want is to ask us to sign away lives we can’t begin to imagine.

David Jayne is a man who understands these issues. A coalition of over twenty Disability-Rights groups referenced him when they prepared a statement in support of Terri Schiavo. Just forty-two years old, he has been diagnosed with ALS.

Every five seconds, a ventilator on a cart next to his bed pumps air into his lungs. He is not able to move. Twelve years ago, Jayne would have dismissed this existence as a living hell. "Yes, I’m very passionate about the Terri Schindler-Schiavo issue, because I live it," says Jayne, who was profiled in TIME Magazine in 2001. Jayne, like many of us, would have once said he could not imagine living in his current state. "If someone had told me I would be paralyzed and tethered to a ventilator, yet still find meaning in life, I would not have believed them." Today he says, "It is incredibly wrong for society to decide who lives or dies based on their opinions of what level of quality of life is worth living."

Think of other people who might have signed their lives away if they’d had their futures described to them. What if Christopher Reeve had written a "Living Will" before falling off his horse? What if Steven Hawking had issued advanced directives in case of losing his voice and motor functions? With a "Living Will" would Tuesdays With Morrie have ever touched our hearts? Did you know that Rose Fitzgerald Kennedy lived with a feeding tube? And what if Pope John Paul II had written a "Living Will" in case of neurological impairment? (Of course, he wouldn’t. But if he wouldn’t, should you?)

"My doctor would know what’s best for me," you say. Keep in mind that it’s usually specialists who guide your care in tough medical situations, not the doctor you’ve known and trusted for years. And, unfortunately, even specialists have a strong track record of being wrong.

Think of the times when doctors (or the courts) have been proven wrong:

• Patricia White Bull awoke from an "irreversible" coma after sixteen years.

• Terry Wallis awakened from another "irreversible" coma after nineteen years.

• Rus Cooper-Dowda could hear her husband and doctors discuss when to remove her ventilator and feeding tube, since she would "never" regain any meaningful function. Unbeknownst to these doctors, Rus was pregnant at the very moment they wanted to kill her. With the surreptitious help of a nurse, she was able to recover; her son will soon turn twenty.

• Evan J. Kemp, Jr., former chairman of the EEOC, was told that his neurological disease would kill him by the age of 18. He’s now 59 years old, and describes himself as having "an extraordinarily high quality of life."

• Kate Adamson was given the diagnosis of Persistent Vegetative State and had her feeding tube removed for eight days. Though she was "locked in" and could not communicate, she was completely conscious, completely aware, and in agony from the starvation she suffered. Her husband threatened legal action until her feeding tube was restored, and Ms. Adamson is today a motivational speaker.

• A wheelchair-bound young man, Joe Ehman was pressured by hospital staff to sign a Do Not Resuscitate order while just waking up from anesthesia. To stop the pressure, he had to muster the strength to scream, "I’m 30 years old. I don’t want to die!"

• Rick Hoyt suffered from a lack of oxygen when he was born and doctors said he would live his life as a "vegetable." His parents, however, never gave up on him, and taught him to communicate with the help of a computer. Today, he’s working for Boston College to develop mobility aids that can be controlled by a paralyzed person’s eye movements.

• In 1993, Maria Matzik, a woman who continues to live with the help of a ventilator, fought against nurses who wanted her to sign a Do Not Resuscitate order. When she refused, they informed her that because she is on a ventilator, nothing would be done if she suffered a cardiac arrest. Today she feels fortunate to have survived that hospital stay.

• Marjorie Nighbert signed an "advance directive" before she was hospitalized for a stroke in 1996. This document stated that she desired no "heroic measures." Based on this, her family requested that her feeding tube be removed. When Ms. Nighbert begged for food, the courts deemed her "not medically competent to ask for such a treatment," and the hospital physically restrained her in bed so that she could not pilfer food from other patients. She died ten days later.

• Within my own circle of intimates, two have survived over three decades each past their doctors’ declarations that they were "terminal."

• David Mack, a police sergeant, was shot in the line of duty. A neurologist diagnosed him as "definitely . . . in a persistent vegetative state . . . never [to] regain cognitive, sapient functioning . . . never [to] be aware of his condition." Less than two years later, Sgt. Mack woke up and went on to make a good recovery. The physician? Dr. Ronald Cranford, the same doctor who has declared Terri Schiavo to be in a Persistent Vegetative State.

In recent years, medical ethics and the law have been twisted in frightening ways. Food and water have been reclassified as "medical treatments" if they’re administered "artificially." Dr. Ronald Cranford has even testified in court that spoon-feeding may be classed as "artificial," presumably because helping people to eat is somehow unnatural. This is a fundamental shift in patient care; we all need food and water. Food and water are not "medical treatments," they’re basic necessities of life. Without them, everyone is "terminal." As the Pope has said, "the presumption should be in favor of providing medically assisted nutrition and hydration to all patients who need them."

Let’s look at how this redefinition is playing out in Terri Schiavo’s case. Terri collapsed in 1990, when Florida considered "artificial sustenance and hydration" to be nothing more than basic food and water. It was not until 1999 that Florida laws changed to redefine tube feeding as "life-prolonging" treatment which could be discontinued. So even if Terri had expressed that which her husband alleges, "no tubes," she could not possibly have imagined that "tubes" would one day be redefined to include "food."

Even worse, this supposed dislike for "tubes" is only hearsay; Terri never filled out any written directives. Her parents are convinced that she never said she’d want to die. A court appointed guardian determined that Michael’s claim is not credible given how long he waited, the money he would inherit, and his (adulterous) romantic relationship. At best, the only testimony given has been that Terri’s alleged comments were episodic, made in the face of tragic circumstances or television documentaries. How do we know whether she was badgered into these alleged statements, as in, "You wouldn’t want to be kept alive like that, would you?" Yet the courts are saying that there is "clear and convincing evidence" that starving to death is exactly what she would have wanted. Since when are people eligible to be killed because of making a passing comment? Why isn’t her choice not to write it down considered clearer evidence than the hearsay presented in court?

And why have her alleged wishes for "nothing artificial" morphed into "nothing"? The court has ordered that Terri may not be fed anything by mouth because she might choke and it could be fatal. If fatality is of concern to the court, why are they ordering Terri’s starvation and dehydration?

This summer, Terri’s parents petitioned the court for eight weeks of rehabilitation so she could be weaned off the feeding tube. Judge George Greer refused their request, writing that it was simply "an attempt by Mr. and Mrs. Schindler to relitigate the entire case." (Funny, some thought it sounded like a way that Terri could live without "tubes.") Michael Schiavo, in his role as Terri’s guardian, will not allow her to receive Holy Communion. Even after her feeding tube was removed, the police officers guarding her prevented a priest from giving her viaticum. This is a clear denial of Terri’s canonical and First Amendment rights.

It’s bad enough that Right-To-Die advocates are using Terri’s situation to encourage the rest of us to sign advance directives. But their exploitation of her does not stop there. Terri Schiavo is surrounded by major players in the Right-To-Die movement. Michael Schiavo chose well when he hired George Felos as his attorney and Dr. Ronald Cranford as an expert neurologist. There are frightening links between them and others involved with Terri. See if you can follow this convoluted web of connections among the people surrounding Terri Schiavo.

Dr. Ronald Cranford was a member of the board of the former Euthanasia Society of America, which eventually merged with Partnership for Caring. Partnership for Caring lists Mary Labyak as a current member of their Board of Directors; she is also the CEO of the hospice where Terri Schiavo lives. Both George Felos and Barbara Sheen Todd have served on the Board of Directors for that same hospice; Mr. Felos was in fact the Chairman of the Board until Terri Schiavo was moved there. Mrs. Todd serves as a Pinellas County commissioner. Judge George Greer served with her for eight years; it is he who has ordered Terri Schiavo’s feeding tube removed. He also appointed a supposedly "neutral" neurologist, Dr. Peter Bambakidis of Ohio, to break the tie between doctors who disagreed about Terri’s diagnosis. Dr. Bambakidis had never before testified in a case like Terri’s, but his brother and George Felos have both served as officers in the American Hellenic Education Progressive Association.

So in a case where clean hands and independence ought to be mandatory, professional associations abound. No disabled person could be well served by these supposedly coincidental connections. How can people with so many affiliations be allowed to decide the death of Terri Schiavo?

Many of these individuals are leading activists in the Right-To-Die movement. They are exploiting Terri Schiavo in hopes of advancing their agenda. If Michael Schiavo and George Felos succeed in starving Terri to death, a legal precedent will have been set that will give guardians far greater leeway to order the starvation and dehydration of their wards. It is instructive to review the activities of the key players trying to kill Terri Schiavo.

Dr. Cranford has been an instrumental force in redefining the determination of death. Death was once defined as the time when the heart permanently stopped beating. Through Dr. Cranford’s activism, it was changed to coincide with the cessation of brain waves. The motivation for this redefinition was so that human organs would survive the death of the patient and be available for transplant. When writing in 1982, Dr. Cranford was highly critical of pro-lifers in general and Catholics in particular as he presented his arguments for this redefinition. His critics? They thought his new criteria might lead to the eventual acceptance of euthanasia. History has proven his critics to be right. Interestingly enough, Dr. Cranford’s published definition of the Persistent Vegetative State differs substantially from Florida law. Court transcripts show that Judge George Greer used Dr. Cranford’s definition in assessing Terri, rather than Florida’s stricter definition.

George Felos is proud to be a "crusader" in the Right-To-Die movement. In his book Litigation as Spiritual Practice (Blue Dolphin Publishing, 2002), he describes his religious beliefs and spiritual practices. These include engaging in a form of telepathy which he calls "soul-speak" to discern the wishes of comatose patients. Using the power of the mind, he believes we are all capable of creating even an automobile for ourselves "out of the ether." While on a commercial plane flight, he once wondered how it would feel to die; he claims his thoughts caused the plane to descend towards a crash, and that God audibly admonished him afterward. His book also explains the motivation of the Right-To-Die movement: its adherents know "that keeping one alive against his wishes — artificially perpetuating the body once the spirit is ready to depart — is a defilement of life’s final rite of passage." This explains his obvious distress when he declared Terri Schiavo was "abducted from her deathbed and her death process" by the actions of Florida’s governor. Distressed or not, it is wrong for him to use the legal system to force his fanatical religious views on Terri, who is Roman Catholic.

Partnership in Caring (linked to both Dr. Cranford and Mary Labyak) is an organization wedded to the Right-To-Die movement. Their website carries a message about the Terri Schiavo case without ever mentioning that Mary Labyak’s hospice is Terri’s home. What does Partnership for Caring say about the Schiavo case? The controversy in her case stems from a misunderstanding of "evolving terms." Did you get that? The Right-To-Die movement is freely admitting that medical terminology can "evolve" and cause the "misunderstanding" plaguing Terri’s family. And their suggestion for avoiding this? Write a Living Will so that your family will not have the same conflicts Terri’s did. They know, even if you don’t, that the literature you find will guide you toward allowing the medical profession to decide when you should die.

In one way, they’re right. As the Right-To-Die movement takes greater control of end-of-life care, it really is important to let your wishes be known. Fortunately, there’s an alternative to standard advance directives. To combat the usual presumption towards death in these documents, National Right to Life has begun the Will to Live Project. At their website you can download state-specific advance directives which have a general presumption toward life. You can make your specific wishes known and define what you consider to be burdensome care while protecting yourself from Right-To-Die zealots who might see you as the next Terri Schiavo.

Let us Catholics never forget that our suffering need not be futile. Remember, St. Paul tells us that "in my flesh I complete what is lacking in Christ’s afflictions for the sake of his Body, that is, the Church" (2 Cor. 12:9). Remember too that when ill, we may be united more closely to Christ’s Passion through the Sacrament of the Anointing of the Sick. The Catechism assures us that our suffering can actually become a participation in the saving work of Christ (CCC 1521).

Remember the American Bar Association’s "Tool Kit" for writing advance directives? I’d like to propose a Catholic alternative:

• "If your skills have faded until all you can do is pray, would you want to be starved and dehydrated to death?"

• "If you knew that your intense suffering was helping souls in Purgatory and your loved ones on earth, would you accept painful physical therapy?"

And for those who remember the aftermath of the Nancy Cruzan case:

• "If you knew your father would commit suicide in grief a few years after he had your feeding tube removed, would you want to continue being fed?"

Terri Schiavo deserves our compassion and our prayers. She also deserves rehabilitative therapy and simple food and water. If her husband succeeds in denying these to her, the Right-To-Die movement will have won a horrible victory.

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Toni Collins and her husband, Rick, live in northern California and are blessed with four wonderful daughters. Toni is a summa cum laude graduate of the University of California-Irvine in computer science. She can be reached at [email protected].

© Envoy

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