A Lethal Evolution

Nancy Valko

It started with a headache. It ended with a shocking death, a devastated family, a tarnished reputation for a hospital, and growing concern about the state of ethics in Catholic health care.

While considerable attention is now focused on assisted suicide, a quiet but lethal evolution of the so–called "right to die" has been taking place in hospitals and nursing homes all over the U.S., even in Catholic health care institutions

The tragic "right to die" case of Steven Becker in St. Louis last year was the first such case in a Catholic hospital to garner any media attention, and this was only because Steven’s mother, Marge Sutter, was willing to take legal action to save her son. Few family members are courageous enough to take on a legal system that rarely supports the right to life in such cases.

Steven Becker was a twenty–eight–year–old father of three small boys who was admitted to St. John’s Mercy Medical Center in St. Louis in March 2000 because of severe headaches. According to his family, Steven knew the situation was serious and that brain surgery was contemplated.

On admission, he was offered a health care directive as required by law but he refused to sign it. Such directives, which encompass the well–known "living will" as well as documents assigning health care decision making to a family member or others, are designed to allow a person to refuse even life–saving treatment or medical care if the person becomes mentally incapacitated.

A few days later, Steven unexpectedly became unresponsive during a test and an emergency operation was performed to relieve the pressure on his brain. He was placed on a ventilator for a few days until he could breathe on his own again, but he did not regain full consciousness.

Rehabilitation was started and, according to family members and progress notes included in the public record, Steven showed some signs of responsiveness. But several weeks after the operation, Steven’s wife, Christie, accepted the prognosis that Steven would not improve and acquiesced to the hospital ethics committee’s recommendation of withdrawing his tube feedings. She was supported in her decision by her parish priest.

According to public court records, St. John’s helped Christie make funeral arrangements and offered counseling for the children in anticipation of Steven’s impending demise.

Alarmed at the unusual speed with which her son was declared a hopeless case, Steven’s mother, Marge, asked for guardianship of Steven, her only child, and a judge granted a temporary stay of the food and water withdrawal pending a court hearing three months later. The court also appointed James Wright, Jr., a lawyer, as a temporary guardian to investigate the situation and make a recommendation. Mr. Wright made it clear from the beginning that his main concern was whether or not Steven was in a "permanent vegetative state" and thus had no chance for a "meaningful life." The case made the front page of the St. Louis Post–Dispatch on June 2, 2000, which portrayed it as just another tragic family dispute. But many readers were alarmed that a Catholic hospital was supporting death by dehydration for a non–dying disabled man.

In a newspaper interview, Sister Pat Talone, the hospital’s ethicist, defended the committee’s recommendation to withdraw treatment by saying that the group "examines medical reality as well as social, spiritual, and ethical principles before making a recommendation."

Pro–life and disability activists picketed the hospital, protesting its intention to withdraw feedings. A month later, Archbishop Justin Rigali issued a statement reiterating the Church’s position on such matters, citing several Church sources including Pope John Paul II’s 1998 statement calling medically assisted food and water "an ordinary means of preserving life."

When it was revealed that rehabilitation efforts were also stopped with the decision to end the tube feedings and that even antibiotics were now considered "life support," an editorial in the St. Louis Review (the archdiocesan newspaper) pointed out that "In a situation where the health of the patient depends not only upon food and water, but on other forms of care and treatment, the purpose of providing food and water should not be undermined by a neglect of the other forms of care. A patient’s life might depend not only upon basic forms of medical treatment such as antibiotics, but upon simple care designed to minimize infection and bolster physical, mental, and physiological functioning."

After September court hearings, which were closed to the public and press, Judge Mark Seigel accepted the recommendation of the court–appointed guardian and gave guardianship of Steven to his wife. Mr. Wright, the lawyer/guardian, maintained that, even in the absence of a "living will" or other advance directive, Steven would have wanted to die in order to spare his family further grief and cited the six–year–old son’s question, "When is daddy going to leave the hospital and go to heaven?" to justify the need to speed Steven’s death.

A few days after the court decision, while an appeal was being planned, Steven was spirited out of the hospital during the night. The hospital, which had finally accepted the Archbishop’s position and thus would not allow Steven’s feeding tube to be removed on its premises, now refused to disclose his whereabouts.

An emergency restraining order against withdrawing feedings was obtained by Steven’s mother, but no one was able to serve it because his location was unknown. As a desperate search began, the Post–Dispatch reported that the feedings had already been stopped.

Several days later and just one hour before a court hearing on extending the restraining order against withdrawing feedings, it was announced that Steven had died at home, attended by a nurse, a doctor, and a parish priest.

In the aftermath of the case, Steven’s mother was left with thousands of dollars in legal bills and the pain of losing a son whose death she was unable to prevent or even witness. Sr. Talone, the St. John’s ethicist, was subsequently promoted to director of ethics for the Catholic Health Association. Meanwhile, Archbishop Rigali’s intervention was publicly condemned by several prominent Catholic theologians and ethicists.

Thirty years ago, I worked as a nurse in the intensive care unit (ICU) at the very same St. John’s Mercy Medical Center. In those days, Euthanasia Education Councils and "living wills" did not yet exist, and calling a patient a "vegetable" was a slur, not a diagnosis.

At that time, there was a consensus among the medical and nursing professions that it was wrong to cause or hasten death, and we knew the difference between ordinary and extraordinary treatment decisions. Medical and nursing students were taught that those patients who could not speak for themselves—for example, infants and the severely disabled—deserved special protection from harm because of their vulnerability. Removing a feeding tube to end a patient’s life was simply unthinkable.

Back then, when a patient’s death appeared to be inevitable, we talked to families about DNR (do not resuscitate) orders and about the option of not initiating more aggressive treatment. But one thing we did not do was talk about withdrawing treatment in order to speed the patient’s death.

I particularly remember one young man who was admitted in a coma after a car accident. The neurosurgeon who examined him predicted he would be dead by morning or become a "vegetable." I was shocked that the doctor said this in front of the patient.

But "Mike" didn’t die, and, after a few weeks, he could move a finger on command and say hi. We nurses were excited, but became baffled when Mike didn’t respond to the neurosurgeon, even with deep pain stimulation. Mike left our unit and we assumed he would spend the rest of his life in a nursing home.

Two years later, a handsome young man strode into our ICU, announced he was Mike, and thanked us for saving his life. We were stunned. Laughing, I told him that he wouldn’t remember this, but he used to respond a little to us nurses but didn’t for the neurosurgeon. The laughter stopped when Mike revealed that he purposely hadn’t responded to the doctor because he had heard him call him a vegetable and it made him angry. Today, Mike would probably be dead because of his refusal to respond to a doctor.

In hospitals all over the country today—Catholic and non–Catholic alike—families are told by doctors with supreme confidence that their loved ones are hopeless and that all treatment should be withheld or withdrawn in order to allow them to die. This often happens within hours, days, or weeks of a person suffering a brain injury, stroke, or critical illness. I have even seen such patients described as "brain dead" so that reluctant families might be induced to withdraw treatment.

There is now a proliferation of "end of life" educational programs that equate the care of the severely brain–injured with the care of the truly dying. Thus death is virtually celebrated as a way to be reunited with God as well as a legal exercise in choosing the so–called "right to die." Even routine medical treatment often seems to be viewed as an impediment to these happy results.

As is often the case, today’s troubling practices have their origins in the bad ideas of the past. The theological rationale for withdrawing feedings from the so–called "vegetative" person was first provided by such ethicists as Father Kevin O’Rourke, now director emeritus of The Center for Health Care Ethics in St. Louis. Like some other ethicists, he claimed that the presumed absence of mental function precluded "vegetative" patients from pursuing the "spiritual purposes of life," and thus that a simple feeding tube was an example of extraordinary treatment which could be ethically withheld or withdrawn. In a 1991 interview, Fr. O’Rourke even dismissed the moral imperative of spoon–feeding such patients, asserting that it should be undertaken only "if there is medical evidence that the (brain) injury is reversible—that [the patient] would be able to know, love, relate to people."

There was no medical breakthrough that initiated this new way of thinking about brain–injured people, but rather a change of spiritual outlook. The example of the Good Samaritan who saved the unconscious man and even paid for his care was replaced with concerns about mental and spiritual "quality of life."

Borrowing from the new secular ethic of "compassionate death," even the Catholic Health Association now publishes articles encouraging "futility policies" for hospital ethics committees that enable them to force the withdrawal of treatment from patients or families who do not make the "right" choice. Articles on rationing health care are presented as being motivated by concerns over "social justice," which simply means that the community is assumed to take precedence over the individual patient.

What can we do to reverse this trend? Policies like those of Archbishop Rigali, which forbid the denial of food and water to the non–dying in St. Louis Catholic institutions, are certainly a promising start. But better educational resources are also needed. Pope John Paul II himself has said that "a great teaching effort is needed to clarify the substantive moral difference between discontinuing medical procedures that may be burdensome, dangerous, or disproportionate to the expected outcome"—what the Catechism of the Catholic Church calls "the refusal of ‘over–zealous’ treatment" (2278)—"and taking away the ordinary means of preserving life, such as feeding, hydration, and normal medical care."

On a more practical level, much more can be done to improve the lives of the "vegetative." Rather than the common policy of discharging such patients to nursing homes when family members insist on continued treatment or the insurance money runs out, Catholic institutions could develop sorely needed long–term rehabilitation facilities that could build on the encouraging work being done with such patients in England and Israel. As Dr. Eugene Diamond has written, such a facility "might well be a place where Christian witness and science combine to investigate PVS (persistent vegetative state) and enhance its favorable outcome."

Going further, the federal law mandating that all patients be offered "living wills" or other advanced directives to "pre–choose" withdrawal of treatment could be met in Catholic hospitals by offering documents that are more protective and clearly reflect Catholic principles. And perhaps the bishops could provide oversight of Catholic ethics teaching and practice on the order of the new oversight of Catholic theology in Catholic universities.

At the very least, we need to counteract the prevailing attitude that it is better to be dead than disabled, and that people in need are burdens to themselves and others. True dignity is inherent in us all and is not extinguished by dependence on others. Which is to say, we need above all to bring back the ideal of the Good Samaritan.

Nancy Valko, an intensive care nurse, is spokesperson for the National Association of Pro–Life Nurses and president of Missouri Nurses for Life.