Perinatal hospice: another choice for women facing unplanned pregnancies?

On May 21, 2006, the Minnesota state legislature concluded its session by passing a modification of its Women's Right to Know Act, a mandatory counseling law designed to discourage women from seeking abortion services. With the enactment of the Fatal Fetal Anomaly Amendment, a woman who has just received the crushing news that her child is unlikely to survive long after birth can now discuss the option of abortion without having to listen to a lecture about the lather's liability, for child support and the availability of Medicaid for prenatal care.

At the same time, these women will also be informed of perinatal hospice services--including end-of-life planning, palliative care and grief counseling--that are available if they decide to continue pregnancy.

Championed by two Twin Cities physicians from opposite sides of the abortion debate while the state's leading pro- and antichoice and groups remained silent on the matter, the Fatal Fetal Anomaly Amendment has been hailed by the Minneapolis Star Tribune as a "tiny patch of common ground" on perhaps the most divisive issue in American politics today.

But how firm is this ground?

While specialized hospice services are necessary for the women who choose to continue pregnancies with congenital anomalies, opponents of reproductive freedom are advancing perinatal hospice as a moral and medical alternative to replace "fetal indication" abortions. Promoted by antiabortion activists as a way to save women from the grief of pregnancy termination and affirm the status of the fetus as an equal and valued human being, perinatal hospice is part of their ongoing effort to limit access to abortion services and cast a pall of moral reproach over an ever-widening number of women.

THE EVOLUTION OF PERINATAL HOSPICE SERVICES

Over the last 10 years, perinatal hospice services have sprouted up in an ad hoc fashion, largely in response to demand from parents whose babies were diagnosed in utero with fatal conditions. Prior to advancements in sonography and genetic screening, parents learned only at birth that their children suffered from conditions such as congenital heart disease, anencephaly (a missing or partially developed brain) or chromosomal abnormalities like trisomy 18. Now that many diagnoses are made around the twentieth week of gestation, parents are increasingly faced with the agonizing choice to continue pregnancy or terminate it.

Elizabeth Sumner, the palliative projects coordinator of the Elizabeth Hospice in San Diego, says that she saw her first perinatal hospice patients when she was the executive director of the children's program at San Diego Hospice. "As we became known for caring for dying babies," she recalls, "pregnant couples began knocking on our door to seek our services." These early patients had accepted the diagnosis that their babies would probably die soon after birth, but they wanted to ensure that the experience was one of dignity.

It is widely acknowledged that most pregnancies diagnosed with fatal fetal anomalies end with termination, but a significant number of women choose to give birth for a variety of reasons. Some have moral objections to abortion, while others receive conclusive diagnoses too late in their pregnancies to obtain abortions. When it's uncertain whether babies' anomalies are fatal, some women feel uncomfortable choosing abortion. Others feel that it's important to hold their children and parent them to the best of their ability, no matter how short their lives may be.

A woman with access to perinatal hospice services typically begins receiving counseling in the second trimester, after extensive fetal testing has revealed a condition incompatible with life outside the womb. "I talk to the parents about the life of the baby and develop an advanced care plan," explains neonatologist Suzanne Toce, medical director of the neonatal intensive care unit at Gundersen Lutheran Hospital in La Crosse, Wis. Toce and the parents go through all of the scenarios they may have to face, including whether to withhold food if a baby doesn't suckle and what to do in case of fetal distress. "The more people understand about their baby's condition," she says, "the less frequently situations arise in which parents demand surgery ... that would cause significant pain and suffering without prolonging the baby's life."

But medical professionals, trained to focus on curing patients, often seem to lack understanding for women who want to continue their pregnancies in the face of lethal anomalies. With the exception of doctors who regularly treat the elderly or those suffering from terminal illnesses, few practitioners are accustomed to redirecting their efforts toward palliative care or hospice. "It's very hard to reframe the medical community's definition of success," says Toce, relating the story of a physician frustrated by his inability to save an infant: "You never say there's nothing you can do! There's always something you can do ... to improve the life of the family."

Unfortunately, the fact that most physicians are better equipped to attend to people's medical, rather than emotional, needs often comes across to patients as abandonment or a lack of compassion. "I've been consistently struck," says Sumner, who has over 27 years of experience as a hospice nurse and administrator, "by the fact that almost every, couple has said that they felt alienated and very harshly judged by medical providers for their decision."

The relatively low visibility of perinatal hospice programs among health care providers may be exacerbating this patient-physician communication gap. Although growing rapidly, dedicated perinatal hospice programs are still not widely available. "I think there probably are a lot of people slipping between the cracks," acknowledges Ann Armstrong-Dailey, the founding director of Children's Hospice International. Because these services are supplied by a wide variety of hospice organizations and health care providers, there is no single provider that physicians can readily identify, when they need to refer patients. "In an ideal world," says Armstrong-Dailey, "the referring physician would be aware of support systems, but that is not always the case."

THE ANTIABORTION CONNECTION

Deftly exploiting this gap in medical care and playing on the popular perception that doctors are unresponsive to their patients' emotional needs, antiabortion forces are now beginning to promulgate perinatal hospice, not simply as an option, but as a moral imperative. According to this view, women should carry all pregnancies to their natural ends, because, as a group of antiabortion physicians wrote in the journal Issues in Law and Medicine, "There is no way to predict before birth what good may come of a child's life, however brief."

This is entirely at odds with the mainstream hospice philosophy, which has no position in the abortion debate. "There's no agenda within hospice to judge people," says Sumner. "We take them at their decision point and go from there."

One of the leading advocates of perinatal hospice is Byron C. Calhoun, a maternal and fetal health specialist who has coauthored most of the articles on the topic in mainstream medical journals, as well as the article cited above. Calhoun apparently coined the term "perinatal hospice" in 1997, and since then, he has published many pieces outlining a model of care and describing its potential benefits for patients who choose not to terminate their pregnancies or who cannot obtain abortions.

These sober academic articles reveal little in the way of an ideological agenda, but Calhoun is deeply involved in national antiabortion politics. Not only is he the former president of the American Association of Pro-Life Obstetricians and Gynecologists, but Calhoun also serves as the national medical advisor for the National Institute of Family and Life Advocates--an organization that "empowers women to choose life." There, he has spearheaded a program to help antiabortion crisis pregnancy centers convert into medical clinics through the provision of ultrasound.

In publications intended for politically motivated audiences, Calhoun and his associates employ an altogether different language from the one he uses in mainstream journals. In the article in Isues in Law and Medicine, which is copublished by the educational foundation of the National Right to Life Committee, they conceptualize perinatal hospice as an alternative to so-called "partial-birth abortion." They argue that perinatal hospice helps anguished parents find meaning in their tragedy and protects women from the psychological fallout of "disordered mourning" that supposedly occurs after terminating pregnancy.

Several antiabortion organizations have already begun to employ this understanding of perinatal hospice to limit access to abortion services. In January 2003, West Virginians for Life successfully pressured the board of directors of United Hospital Center in Clarksburg, W.Va., to rescind the decision it had made less than a month earlier to allow abortions in the rare instances of fatal fetal anomaly. "Offering a woman abortion in these circumstances," West Virginians for Life executive director Karen Gross told West Virginia's Charleston Gazette, "deprives her of memories of precious moments spent holding her child, instead of the painful memories of abortion that denies the humanity of her child."

On the Web site of Choices Medical Clinic in Wichita, Kan., an antiabortion crisis pregnancy center that attracts patients in part by advertising free ultrasounds, Calhoun is hailed as the creator of the perinatal hospice concept. Three of his mainstream journal articles are featured on the site, apparently to lend an aura of medical legitimacy to the clinic's perinatal hospice program. The approach blurs the distinction between medical science and activism, because perinatal hospice is offered in this case solely as a tool to advance the mission of "enabling women to avoid abortion."

NO EASY CHOICES

Sixty percent of Americans support the right to abortion in cases where children would be born with life-threatening illnesses, according to a 2003 Gallup poll. For women who are faced with fatal fetal anomalies, though, the decision to terminate pregnancy is fraught with complex emotions that cannot be encompassed by the catchphrases of abortion politics. "I'm really worried," says Karen Kubby, director of the Emma Goldman Clinic in Iowa City, Iowa, that in these instances, "putting the continuation of the pregnancy out there as a moral objective really adds additional emotional and judgmental pressures on that family."

Upon receiving diagnoses of congenital fetal anomaly, many women are immediately grief-stricken at the prospect of losing children they had long hoped for. Fearing that they're to blame for their babies' problems, they often feel guilty and ashamed. When women choose abortion in these circumstances, it's not out of blind pursuit of self-determination, as antichoice forces suggest. Instead, their decisions are made in the context of many competing obligations and moral imperatives. Most frequently, a woman worries about the impact that bringing this one life into the world would have on her ability to meet the needs of her children and her spouse.

"All of these pregnancy decisions are really very profound and unique to that person," says Peg Johnston, director of Southern Tier Women's Services and president of the Abortion Conversation Project, an initiative to promote post-abortion emotional health. "I don't think anyone should be hustled into an abortion if they don't want one, and I don't think they should have to go through a birth if they don't want to."

Antiabortion forces are quick to seize upon the examples of women who experience anguish after terminating pregnancy as a rationale for outlawing abortion. They fail to acknowledge the experience of women--like those profiled in Rayna Rapp's Testing Women, Testing the Fetus--who, having been denied the option of abortion, have to endure the trauma of labor to deliver children that would not live. The loss of a hoped-for pregnancy is a source of grief, whether it occurs through abortion, still birth or neonatal death.

"I think that we are, both as a society and a prochoice movement, a little uncomfortable with expressions of grief around pregnancy loss or abortion," says Johnston, "but the more we acknowledge the differences in how people approach it, the less that antiabortion activists can exploit that vein of sadness and grief."

IMPLICATIONS FOR ABORTION RIGHTS

In an ideal world, women contending with tragic pregnancies would receive well-informed and nonbiased counseling from their doctors. Those that chose to continue pregnancy would receive professional hospice services to guide them through the difficult decisions surrounding the birth and care of their infants. No matter whether they chose to give birth or terminate pregnancy, women and their families would receive necessary bereavement support both during and after pregnancy.

We don't live in an ideal world when it comes to women's reproductive freedom. Antichoice organizations like the American Association of Pro-Life Obstetricians and Gynecologists are successfully promoting state and federal refusal clauses, which allow health care providers to withhold medical services--and referrals for services--that they find morally objectionable. Conceptualizing perinatal hospice as a medically equivalent substitute for late-term abortion buttresses the position of antichoice providers who'd prefer to direct patients only to options that coincide with their beliefs.

Although Minnesota's Fatal Fetal Anomaly Amendment will undoubtedly save a handful of women each year from the worst aspects of the state's informed consent law, it does nothing to enhance the provision of services and may actually have a counterproductive effect in the overall struggle for reproductive rights. Not only does it reinforce ongoing efforts to attribute legal personhood to the fetus, but by establishing a legal foothold for the concept of perinatal hospice as an alternative to abortion, Minnesota's law can also be cited in future efforts to justify outlawing late-term abortion altogether.

Minnesota's law also has the potential to weaken the leverage of prochoice activists in the 20 states that currently have no biased counseling laws. When asked whether Minnesota's amendment constituted a "third road" in the abortion debate, prolife physician and amendment sponsor Steven E. Calvin said, "Oh, yes, I really do. I think it's something that allows a lot of common ground to be made. Everyone--everyone who's someone of good will--supports this." Now, antiabortion forces beyond Minnesota can advance similar "compromise" positions, which seem reasonable but leave the antiabortion content of their legislative proposals unaltered.

References to perinatal hospice cropped up during the 2003 US Senate debates on the Partial-Birth Abortion Ban Act. Cathleen Cleaver, then planning and information director for the US bishops' Secretariat for Pro-Life Activities, published an article in the ultraconservative National Catholic Register and the Human Life Review that articulated a two-pronged argument: First, it's morally imperative to protect the interests of all unborn children, not just the perfect ones; second, perhaps in anticipation of objections to the first prong, there's no medical need for fetal indication abortions anyway, since the alternative of perinatal hospice is available. When the Supreme Court moves to consider the constitutionality of this federal ban later this year, we can expect perinatal hospice to figure more prominently.

Perhaps the most disturbing aspect of promoting perinatal hospice as an "alternative" to abortion is the potential it has to cast moral doubt upon a whole category of abortions for which there is currently significant public support. Just as the term "partial-birth abortion" helped erode approval for a right to second-trimester abortions, juxtaposing a generally popular concept like "hospice" against abortion could chip away at the public's tolerance of fetal indication abortions. "Hospice is a very important aspect of health care today, especially now as the population is aging," notes Kubby, "and it seems like anti-choice groups are hijacking the good will and great services that hospices have introduced into the community."

DENISE V. POWERS is a freelance writer based in Washington, DC, who writes on women's issues and political life in the US and abroad.