Where to Draw the Line? Prenatal Ethics.
A practice called early induction for fetuses with anomalies incompatible with life has sparked debate.

Thomas Szyszkiewicz
Our Sunday Visitor (OSV)
March 7, 2004
Reproduced with Permission
http://www.osv.com/

Contents

  1. When birth means death
  2. What's at stake
  3. What the U.S. Bishops say
  4. Hospital faces fight with Right to Life
  5. Loyola confident, others troubled
  6. Hospice helps heal heartache
  7. One mother's story

1. When birth means death

Pregnancy the promise of a new child, the creation of new life is a cause of great joy.

In some cases, however, that joy can be tinged with grief and fear when the unborn child is diagnosed as having a serious or life-threatening medical condition. Such early diagnosis is becoming increasingly common with prenatal technologies such as ultrasound and amniocentesis, which can identify abnormalities such as spina bifida or Down syndrome more easily than before.

Too often in our culture of death, abortion is offered as a "solution" to women facing these difficult situations.

Although it might be assumed that a Catholic health-care institution would counsel a woman in such circumstances to carry her child to term and support her in that decision, such may not always be the case.

Fatal anomalies

An Our Sunday Visitor investigation has revealed that some Catholic hospitals perform a procedure called "early induction for fetuses with anomalies incompatible with life" known by its acronym, EIFWAIL, or simply as "early induction." This procedure induces a woman into labor after her unborn child reaches viability around 23 to 26 weeks in cases when the child is known to have a condition that makes death inevitable soon after even a full-term birth. The child born in this way is made comfortable and often held by the mother until death.

The two most common conditions for which this procedure is performed are anencephaly, in which the child's brain and skull fail to develop beyond the brain stem, and renal agenesis, in which the kidneys and lungs are underdeveloped. Children with these conditions generally do not live beyond a few minutes to a few hours outside the womb (although some anencephalic children have lived for months after birth).

Neither presents an immediate danger to the mother. Anencephaly by itself causes no complications to the mother, according to medical experts consulted by OSV. Renal agenesis may lead to complications if the child dies in the uterus, but close monitoring greatly reduces this risk.

Early induction was first brought to national attention when it was reported that Christ Hospital in Oak Lawn, Ill., was performing the procedure and leaving the newborns to die unattended. Jill Stanek, a nurse at the hospital who blew the whistle on the practice, later helped persuade Congress to pass the federal Born Alive Infants Protection Act, which requires medical professionals to give care and comfort to such newborn patients.

Those Catholic hospitals that OSV found using the EIFWAIL procedure are Providence Alaska Medical Center in Anchorage, Alaska, part of the 10th-largest Catholic health system in the country, and Loyola University Health System in Chicago. Spokespersons for the other nine largest Catholic health-care systems contacted for this story were either vague about their hospitals practices or did not return calls. Only Catholic Healthcare West, which is based in San Francisco and has 41 hospitals in California, Arizona and Nevada, responded unequivocally that it does not allow the procedure.

The Catholic hospitals OSV spoke with that use this procedure emphatically denied they are anything like Christ Hospital, which is not Catholic-run. But pro-life and other Catholic leaders say the EIFWAIL procedure resembles abortion too closely and many called it abortion outright.

A 1998 statement on early induction for anencephalic children, issued by the U.S. bishops Committee on Doctrine, clearly sides with the latter opinion.

Proportionate reasons

Yet the hospitals OSV contacted believe their procedures conform to the U.S. bishops 2001 "Ethical and Religious Directives for Catholic Health Care Services" (ERDs) , which sets out the norms and principles for Catholic health-care ethics. One directive is at the heart of this issue: "For a proportionate reason, labor may be induced after the fetus is viable" (no. 49).

But what is a "proportionate reason"? That is what is at issue here.

James LaGrye, a theologian in the U.S. bishops doctrinal office, said the word "proportionate" in the ERDs comes from the teaching of St. Alphonsus Ligouri, who used the term for situations in which some grave risk would be incurred if an action were not taken to avoid it.

LaGrye said the mental health of the mother "is a reason" to perform early induction. While he defended the ERD document against charges that it employs moral proportionalism, he said, "There are times when you do need to weigh things."

According to the 1998 statement "Moral Principles Concerning Infants with Anencephaly" by the bishops doctrinal committee, anencephaly is a condition of the child and not the mother, so "terminating her pregnancy cannot be a treatment of a pathology she does not have. Only if the complications of the pregnancy result in a life-threatening pathology of the mother may the treatment of this pathology be permitted, even at a risk to the child, and then, only if the child's death is not a means to treating the mother."

Medical, ethical issues

Leading Catholic medical ethicists also question the EIFWAIL practice.

"There's a principle that serves the Church well at the end of life and is applicable to the beginning of life as well," said Conventual Franciscan Father Germain Kopaczynski, director of education for the National Catholic Bioethics Center in Boston: "When in doubt, choose life."

This is an ancient principle that must govern all of Catholic health care, he told OSV.

"We must assume that the safest place for a child, barring serious maternal pathology, is in his or her mother's womb," said Father Kopaczynski.

Early inductions are used in many cases where there is danger to the life of the mother, such as with severe toxemia or pre-eclampsia. But "just because you can have early inductions [for some reasons] doesn't mean you can do early inductions for any reason," said Janet Smith, a professor of moral theology at Sacred Heart Major Seminary in Detroit.

Medically speaking, according to physicians who deal with difficult pregnancies on a regular basis, there is no more valid reason to perform an early induction for a baby with fatal anomalies than there is for a healthy unborn child.

Dr. Thomas Hilgers, founder and director of the Pope Paul VI Institute at Creighton University in Omaha, Neb., said that "these babies should be allowed to go to term as any other babies are. The bottom line issue is, would you do this to a baby who is normal? No, you would never subject that baby to prematurity."

Dr. Byron Calhoun, a maternal-fetal medicine specialist at Rockford Memorial Hospital in Rockford, Ill., said early induction is never necessary. A principal founder of a movement called "perinatal hospice," which cares for newborns with expected brief life spans, Calhoun said one of his many concerns is that mistakes can be made the diagnosis of a fatal abnormality in the unborn child sometimes might be wrong, and a healthy child could be forcibly born prematurely.

"We are not omniscient," he said of physicians.

Dr. John Haas, director of the National Catholic Bioethics Center, concurred. "Remember that medicine is an art, not an exact science," he said.

Both physicians emphasized that early induction can be done in these situations for the same conditions in which it would be done with normal children, such as when the mother's physical health is imminently endangered. Yet early induction also presents potential problems for the mother increased risk for an incompetent cervix in a later pregnancy, for breast cancer and for impaired mental health so these physicians say this procedure should be avoided at all costs.

The moral risks

The Catechism of the Catholic Church, while not directly addressing this procedure, does say, "Prenatal diagnosis is morally licit - if it respects the life and integrity of the embryo and the human fetus and is directed toward its safeguarding or healing as an individual" (no. 2274).

Most often, Hilgers said, the only option presented to mothers facing the probability of carrying a child with fatal abnormalities is to terminate the pregnancy. He was sharp in his criticism of this mindset: "These women are being aborted by the medical establishment," he said. "This is all part of the abortion mentality."

Both Providence and Loyola have done these procedures for the mother's mental health and to relieve "familial distress." But, Father Kopaczynski said, "I think health-care professionals sell women short." While "they're probably well-intentioned," the professionals tend to treat women as though they are fragile and unable to cope with such a difficulty. "I don't think that's the best assumption," he said.

Haas agreed and wondered, "how do you assess or judge" what kind of reaction a woman will have to the news of her child's condition, or how she will respond to an early induction?

Sacred Heart Seminary's Smith wholeheartedly concurs with that judgment. "If you present it to the woman that this is the only chance she'll have to love this baby, why would she go looking for a reason to end that life?"

Hilgers had frank words for Catholics who try to protect other Catholics from necessary suffering: "This is Christianity with an epidural block."

It's about love

"I do believe disabled babies are part of God's plan," said Mary Jane Owen, director of the National Catholic Partnership on Disability, based in Washington, D.C. "In many ways, they civilize us as a society.

"When you have a bunch of people in an elevator and a mentally retarded child comes on," Owen said, "they start civilizing that little culture."

Hilgers wholeheartedly agreed. "I'm convinced these children are conceived for a reason," he said. "I think the biggest reason is to draw out our ability to love."

2. What's at stake

Why do some women consider the early induction procedure?

A. Why do some women consider the early induction procedure after a diagnosis of fetal abnormalities incompatible with life?

B. What are the major ethical and medical objections to this procedure?

3. What the U.S. Bishops Say

Key passages in the U.S. bishops' documents related to early induction

45. Abortion (that is, the directly intended termination of pregnancy before viability or the directly intended destruction of a viable fetus) is never permitted. Every procedure whose sole immediate effect is the termination of pregnancy before viability is an abortion, which, in its moral context, includes the interval between conception and implantation of the embryo. Catholic healthcare institutions are not to provide abortion services, even based upon the principle of material cooperation. In this context, Catholic health-care institutions need to be concerned about the danger of scandal in any association with abortion providers.

47. Operations, treatments and medications that have as their direct purpose the cure of a proportionately serious pathological condition of a pregnant woman are permitted when they cannot be safely postponed until the unborn child is viable, even if they will result in the death of the unborn child.

49. For a proportionate reason, labor may be induced after the fetus is viable.

U.S. Bishops Ethical and Religious Directives for Catholic Health Care Services

Hence, it is clear that before "viability," it is never permitted to terminate the gestation of an anencephalic child as the means of avoiding psychological or physical risks to the mother. Nor is such termination permitted after "viability" if early delivery endangers the child's life due to complications of prematurity. In such cases, it cannot reasonably be maintained that such a termination is simply a side effect of the treatment of a pathology of the mother.

Anencephaly is not a pathology of the mother, but of the child, and terminating her pregnancy cannot be a treatment of a pathology she does not have. Only if the complications of the pregnancy result in a life-threatening pathology of the mother may the treatment of this pathology be permitted, even at a risk to the child, and then, only if the child's death is not a means to treating the mother.

The fact that the life of a child suffering from anencephaly will probably be brief cannot excuse directly causing death before "viability" or gravely endangering the child's life after "viability" as a result of complications of prematurity.

Moral Principles Concerning Infants with Anencephaly , Committee on Doctrine, National Conference of Catholic Bishops, 1998

4. Hospital faces fight with Right to Life

It was at Providence Alaska Medical Center in Anchorage where early induction of fetuses with abnormalities incompatible with life (EIFWAIL) was first revealed to be practiced last April and where the most public controversy has been.

Acting on an anonymous tip that the procedure was being performed at Providence, Alaska Right to Life president Ed Wassell confronted the hospital's administrator, Al Parrish, who confirmed the rumor. Dissatisfied after two discussions, Right to Life asked Archbishop Roger Schwietz of Anchorage to intervene and bring the practice to an end.

Archbishop Schwietz asked Providence last August to suspend the practice until he could review the protocols under which EIFWAIL was being used.

"When I did receive the guidelines and read through them, it seemed to me that they were in keeping with the [U.S. bishops "Ethical and Religious Directives for Catholic Health Care Services"] and that the system was seriously considering each case through their ethics committees in the light of the Ethical and Religious Directives," he told Our Sunday Visitor. "That is when I told the Providence Alaska Medical System that, in my estimation, they were indeed following the Ethical and Religious Directives and could proceed."

Right to Life was not happy with that decision and picketed the hospital on Jan. 22, the anniversary of the 1973 U.S. Supreme Court abortion decision in Roe vs. Wade. An internal memo obtained by OSV told Providence employees about the protest and sought to explain why it was being held:

"We do perform a procedure called early induction, which we believe they [Alaska Right to Life] are inaccurately comparing to late-term abortions.

"Early induction is a medical procedure available to women who are experiencing life-threatening complications to themselves or their fetus during pregnancy. This is a procedure performed in many Catholic hospitals. These are tragic, grief-filled and difficult decisions that are made between a physician and a family based on medical necessity. [Providence Alaska Medical Center] does have an ethics review team that evaluates each early induction case on its merits and whether the procedure remains within Catholic ethical and religious directives. It is important to note that this is a procedure that is performed infrequently, at most, five times a year . . . .

"We are comfortable in our position, and disagree with their interpretation of our procedure and our intent in providing it as a medical option for mothers experiencing life-threatening complications. We will not be discontinuing the procedure because of their actions."

Providence remains sure of its position.

"We are awaiting final review from the archdiocese of the language for our internal guidelines and protocols for early induction procedures at Providence Alaska Medical Center," the hospital said a statement released to OSV. "However, the archbishop has publicly expressed his confidence that our practice here follows Catholic Ethical and Religious Directives."

The Anchorage archdiocese has retained the National Catholic Bioethics Center (NCBC) to help draft new protocols for Providence Alaska.

While not commenting on the specifics of the protocols, Conventual Franciscan Father Germain Kopaczynski said the NCBC staff struggled to draft norms that "do justice to all involved," especially the child, the mother and Christ's laws.

"We're fighting for words," he said, "and when you're doing that, you're fighting for the Word."

Two of the most contentious words are "proportionate" and "viability." Because the key directive (no. 49) is so brief, it is open to wide interpretation, he said.

"Viability" has been defined at Providence as 23 weeks gestation. But while "a healthy child might make it" at that age with aggressive intervention, "a disabled one won't," said Father Kopaczynski.

The other term, "proportionate," is also disputed. If what is at stake "is a life for anything less than a life" anything less than the mother's physical life "the proportion breaks down," he commented.

Not the only issue there

Another issue at Providence Alaska related to this is who the staff physicians are. Dr. Nelson Isada is employed by the hospital to direct its genetics program. He used to work at Hutzel Hospital in Detroit. While there, he co-authored numerous papers in the field of prenatal genetics, including one called, "Fetal Intracardiac Potassium Chloride Injection to Avoid the Hopeless Resuscitation of an Abnormal Abortus." The paper describes how Isada and his team used ultrasound to guide a tube into baby’s hearts to inject a drug to stop the heart.

"The increased availability of genetic services and the wider use of obstetric ultrasound," the team wrote in the August 1992 edition of the journal Obstetrics and Gynecology, "have revealed a large number of fetuses with anomalies that previously were not detected prenatally." They then state that some patients choose to have an abortion, but that some of the diagnoses are made later on which can cause the risk "of producing a ‘live-born’ (if not viable) neonate. Indeed, at some medical centers, it is an institutional policy to refer late-diagnosed patients elsewhere for management rather than to offer abortions."

Isada also co-authored a paper on selective abortions in multiple pregnancies. Additionally, he was party to a lawsuit with Planned Parenthood of Alaska in 1997 against the state of Alaska when a partial birth abortion ban was enacted there.

Providence was asked about having Isada on staff when the ERD’s state, "Catholic health care institutions need to be concerned about the danger of scandal in any association with abortion providers." The hospital replied, "We do not believe the activities you brought up about Dr. Isada's past have any impact on his ability to practice at Providence Alaska Medical Center, nor do we believe there is any reason for concern about the procedures he has performed or will perform in our facility. He is aware of, and has expressed respect for, our policies and procedures, and he has performed within these parameters since joining our staff."

The archdiocese declined comment saying it was a hospital issue.

5. Loyola confident, others troubled

Loyola University Health System told Our Sunday Visitor that it does allow for early induction for fetuses with anomalies incompatible with life (EIFWAIL).

Jesuit Father Jack O'Callahan, a staff ethicist at Loyola, said the procedure is performed in compliance with the U.S. bishops "Ethical and Religious Directives for Catholic Health Care Services" (ERDs).

At Loyola, which includes the Loyola University Medical Center in suburban Chicago, 13 primary-care centers and two ambulatory surgical centers scattered across two Illinois counties, EIFWAIL is done at the medically accepted age of viability, which is currently 23 weeks gestation. "Anything earlier than that would be abortion," Father O'Callahan said.

The reason for induction, Father O'Callahan said, is to "try to ward off the physical complications of bringing to term a child who is not going to live anyway."

Dr. John Gianapolous, a maternal-fetal specialist at Loyola, said the overriding concern is for the mental health of the woman. "Quite often, she can't go on knowing" that the child in her womb will die at birth, he said.

Officials at the Archdiocese of Chicago were unaware that this procedure is taking place at Loyola until they were contacted by OSV, according to Mary-Louise Kurey, director of the archdiocesan Respect Life Office. Bishop Edwin Conway, vicar general and health-care liaison for the archdiocese, responded to the OSV inquiry in a brief statement through Kurey's office by saying, "We are very concerned about this."

Kurey added that the bishop would confer with the U.S. bishops Committee on Doctrine "to review the limitations and proper procedures, then follow up with Loyola on this very important issue."

According to both Father O'Callahan and Gianapolous, Loyola performs early induction for children with anencephaly and renal agenesis.

Gianapolous told OSV that only five EIFWAIL procedures have been performed at Loyola over the past 10 years.

The fatal anomalies in these five babies were diagnosed late in the pregnancy, while most diagnoses are made earlier, according to Gianapolous. Those who are diagnosed early usually choose to go somewhere else "to terminate the pregnancy," he said.

He noted that an unborn child with renal agenesis can be a threat to the mother's life because if the child dies in the uterus, the body can begin to decay and cause a toxic reaction in the mother.

Former Illinois state Sen. Patrick O'Malley was disturbed by reports of this procedure at Loyola. He was on the board of Christ Hospital in suburban Chicago in 1999 when nurse Jill Stanek went public with that institution's practice of "live birth" abortions leaving newborns to die after early inductions. He eventually resigned from the board after his motion to prohibit the procedure failed by one vote.

O'Malley soon accepted an invitation to join Loyola's board, but under two conditions, he told OSV: "No abortions, and, in the realm of bioethics, that they stand firmly with the cardinal [Francis E. George] and the Pope on these issues." He had received assurances that this was the case, he said.

Patricia Cassidy, a senior vice president for system development and strategy at Loyola, dismissed any comparison to the practice at Christ Hospital.

"They are not in any way the same," she said. "We are acting within the guidelines of the Ethical and Religious Directives. . . . I can't speak for Christ Hospital, but I don't think they would say that about what they're doing."

But Stanek is not convinced. She said early induction goes by quite a few names, including "induced abortion" because "they're terminating a pregnancy purposefully."

6. Hospice helps heal heartache

When tragedy strikes a family, people will often come together to help them through it. But when that tragedy is the diagnosis of an unborn child's fatal medical condition, often the only "help" the family receives is the advice to "terminate the pregnancy."

Fortunately, however, that is beginning to change through perinatal hospices, a small movement begun by an evangelical physician and now being taken up by Catholics.

Dr. Byron Calhoun, a maternal-fetal specialist in Rockford, Ill., said he started this work as many other good works are begun: "The divine comes crashing in on you."

He decided that when a child is diagnosed as having some sort of fatal anomaly, such as anencephaly, "there had to be a better way" of caring for the families involved.

He also found that of the women who find themselves in this situation, "25 to 30 percent of them don't want an abortion."

"What I see is a heroic love; I see what married love should be," she said. "There is courage in the face of the most devastating circumstances."

So, while he was in the Army and stationed at a hospital in Washington state, he set up a system of support for these women by coordinating social services, transportation, health professionals and pastors to help the parents through the entire pregnancy.

Since then, this work has spread its good around the country.

"This is a place for them to come and grieve together, where they can connect with another family that understands the pain," explained Patti Lewis, director of Alexandra's House in Kansas City, Mo.

A woman does not live at the hospice center during the entire pregnancy, but will stay before and just after delivery. What Lewis sees take place with the couples who come amazes her.

"What I see is a heroic love; I see what married love should be," she said. "There is courage in the face of the most devastating circumstances."

The children born under the care of the hospices, Dr. Calhoun said, include those with anencephaly (underdeveloped brain), renal agenesis (underdeveloped lungs and kidneys) or even multiple deformities. That usually means they have very little, if any, time to be alive with their parents.

But what time they do have is extremely precious to the couple afterward, Lewis said. In fact, couples who have gone through the perinatal hospice process say they rate those moments as "the most important time" in their lives.

Why go through all this pain? Because, Lewis found, the couples grieve a shorter period of time afterward, and they know "that they said yes to the walk" of suffering to the end: "They got through it." These couples are not plagued, she said, with doubts of "did I do the right thing?" or "maybe God would have done a miracle."

Lewis offers the couples who have gone through the house an opportunity to participate in quarterly meetings and an annual retreat. This has helped many of them tremendously; they say this is the one place where they can talk about their baby without having people turn away.

But what is even more astonishing is finding that the children who were born only to die have a huge impact on people's lives. At funerals, Lewis said, she has seen churches packed with people with whom the couple works, and "the tears of young men" as they see the casket.

One boy even said of his sister, who was named Grace, "I have seen her change my friends lives."

"In His eyes," Lewis said, "they have a purpose in the body of Christ."

Dr. Tom Hilgers of the Pope Paul VI Institute in Omaha, Neb., wholeheartedly concurs. He remembers one patient who had an anencephalic baby. He helped her carry the baby to term and "because of the extra 13 weeks of life, 200 people came to the funeral.

"I am convinced they are conceived for a reason," he said. "I'm not sure that it's right, but I think the biggest reason is to draw out our ability to love."

While Hilgers does not have a formal perinatal hospice, the people with whom he works offer his patients a tremendous amount of support in difficult pregnancies, he said.

"It is a remarkable experience for us," he said. "When we do it, we are better people for it."

7. One mother's remarkable story

Our babies deserve love, dignity and respect (By Toni)

When my daughter Cecilia's anencephaly was diagnosed by ultrasound in September 2002, the first and only real option my husband and I were given was abortion. I was encouraged to check in to the hospital immediately to have a "dilation and extraction" (D&X, or partial-birth abortion). The maternal-fetal medicine specialist at the world-renowned medical center told me that I couldn't carry my baby to term that I would be risking my life.

Our first call was to our priest, who told us that, because our baby could not live outside the womb, it was acceptable to induce labor early. The next day my obstetrician, who is not a Catholic but a Christian, told me that he would not perform an abortion and that inducing early in this case was not abortion.

It seemed my three choices were "Kill the baby, kill the baby, or kill the baby," yet everyone kept saying I was wrong. I could have the D&X the doctors recommended, induce labor or wait for her to be stillborn. The doctors made it sound as if it were perilous for me to give birth to an anencephalic baby.

After meeting with our priest, I checked into the hospital for induction of labor. Labor was hard; my body wasn't anywhere near ready to birth my baby. I felt Cecilia kicking until early in the morning. After 18 hours of very painful Cytotec-induced labor, she was stillborn. I scooped her up before the doctor could get her. We didn't know until that moment that she was a girl.

There she was the baby we'd tried so long to conceive, the baby we thought would never happen, the baby we'd longed for, prayed for, rejoiced over, whose kicks made me laugh in the middle of the night.

There she was, dead in my hands: Dead by my hand. She was so delicate and helpless, and I knew without a doubt that, no matter what anyone said, I had done something terribly wrong. God had entrusted this life to me, and when I found out it was not a perfect one, I snuffed it out.

I kept telling people that what I had done was wrong, but no one wanted to listen. They kept telling me I'd done the right thing and that Cecilia would have died anyway. Then I started finding stories on the Internet by mothers who had carried anencephalic babies to term.

A week after her funeral, I found the U.S. bishops document, "Moral Principles Concerning Infants with Anencephaly," and a document on catholicculture.org. It was there in black and white: My early induction of labor was an abortion.

Nearly a year and a half has passed since Cecilia's death. Although I've been to reconciliation and received absolution, the fact remains that I killed my daughter. Though I sought and acted on the advice of my doctors and my pastor, I ultimately made the decision to end her life. There is no doubt that her condition was fatal, but it was not for me to decide how long her life would be. Every day I mourn her death. I should have fought for her and protected her, no matter how short a life God had in mind.

Doctors and others make it sound like ending the life of an unborn child with a fatal condition is the sensible thing to do that parents are able to "move on" and assimilate their loss more quickly. I can tell you that they are wrong. They are not the ones who will have to live with their decision every day of their lives. They are not the ones who will think again and again about what they've done or about how the tiny, lifeless body of their child looked and felt.

The people who tell you early induction is acceptable will try to make it sound as if babies with fatal conditions are less than human. They may have good intentions, but they are wrong. Our babies, no matter how flawed, are human beings deserving love, dignity and respect.

Toni (real name withheld) later became pregnant again. This time, her child was diagnosed with the genetic anomaly Trisomy 18 and possibly Down Syndrome. She carried the child to term and gave birth to a perfectly healthy son.

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