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Expecting the Unexpected: Perspectives on Stillbirth and Late Termination of Pregnancy for Fetal Anomalies

DiMiceli-Zsigmond, Mary MD; Williams, Amanda K. MD; Richardson, Michael G. MD

doi: 10.1213/ANE.0000000000000785
Obstetric Anesthesiology: Special Article
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Expectant mothers and their spouses spend months preparing to eagerly welcome their much-anticipated baby into their family. Stillbirth or a diagnosis of life-limiting fetal anomalies comes as a devastating turn of events for affected women and their families. From the time of diagnosis to intervention (i.e., induction of labor for stillbirth or late termination of pregnancy for fetal anomalies), affected women often feel vulnerable and abandoned, with many experiencing long-term psychological and emotional effects. Knowledge of obstetric management, ethical and medical challenges, and psychological aspects have evolved in recent years. Familiarity with this emerging knowledge better prepares the obstetric anesthesiologist to deliver effective and empathic care. Encounters with women experiencing stillbirth and life-limiting fetal anomalies prompted this review of current evidence regarding parturient’ perspectives on their care as they set out on the road to recovery.

From the Department of Anesthesiology, Vanderbilt University School of Medicine, Nashville, Tennessee.

Accepted for publication March 25, 2015.

Funding: Department of Anesthesiology sources only.

The authors declare no conflicts of interest.

Reprints will not be available from the authors.

Address correspondence to Michael G. Richardson, MD, Department of Anesthesiology, Division of Obstetric Anesthesiology, Vanderbilt University School of Medicine, VUH 4202, Nashville, TN 37232. Address e-mail to michael.g.richardson@vanderbilt.edu.

Pregnancy and childbirth are typically joyful experiences that culminate in the birth of a healthy baby. However, 6 of 1000 expectant mothers face the harsh reality of stillbirth, and an additional 3 of 1000 learn that they carry fetuses with significant anomalies.1–3 The moment a mother learns of either diagnosis, the future she had envisioned for her child, family, and her own motherhood is shattered. Parents’ unpreparedness for the distressing reality of stillbirth or fetal anomaly and the speed of events that transpire soon after diagnosis render them particularly vulnerable to loss of autonomy. Almost immediately, the mother is pressed to consider mode of delivery, whether and how to interact with her baby, and whether to collect tokens of remembrance. What about postmortem examination? Future pregnancies? Will they prepare a funeral and burial? Mothers and fathers in both situations frequently feel alone in their suffering, often delivering in facilities surrounded by others experiencing the joys of healthy childbirth. Referral to unfamiliar facilities and subspecialty experts can compound feelings of isolation. Mothers often experience long-lasting grief over the loss of their much-anticipated child.

Severe fetal anomalies and stillbirth pose unique challenges for health care providers: delivery of bad news, timing and mode of delivery, postpartum investigation of cause, counseling regarding future pregnancies, and providing support to mothers and their families to promote their psychological recovery. Many medical providers have difficulties coping with these unpleasant issues, which may hinder their ability to provide empathic, supportive care. Obstetric management has evolved to address many of the medical challenges, and knowledge regarding the psychological and emotional aspects has grown exponentially in recent years. Although anesthesiologists routinely collaborate with obstetricians, midwives, and nurses in the care of these women, current anesthesiology literature, including a leading obstetric anesthesiology textbook,4 has not kept pace with evolving knowledge and contains little guidance on the care of these mothers. The purpose of this special article was to bridge the knowledge gap and to help equip obstetric anesthesiologists to establish therapeutic relationships with vulnerable mothers whose peripartum experiences are often characterized as “insufferably hard” and “emotionally straining.”5 We describe 2 women with very different diagnoses, circumstances, and obstetric courses, yet many commonalities. Their stories and the discussion that follows highlight the need for expert management, sensitivity, and advocacy, and the importance of eliciting and honoring patient values and autonomy during this difficult time.

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CONSENT

We applied for approval of the IRB at Vanderbilt University, which deemed this project exempt from IRB review because it does not involve human research. This is in accordance with institutional policy regarding any case report involving ≤3 patients.

We contacted both subjects to request their consent. We successfully obtained verbal and written consent from one patient but failed to make contact with the second subject, despite numerous attempts by phone. Her hospital record reveals that numerous other providers have similarly been unable to contact her.

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CASE A

Holly (pseudonym), a 25-year-old G2 P0100 with poorly controlled type 1 diabetes mellitus, presented in labor at 34 weeks, 4 days gestational age. Her fetus had known severe cardiac and intracranial anomalies, including hydrocephalus. Assessment on admission revealed intrauterine fetal demise, breech lie, and an unfavorable cervix. She initially requested cesarean delivery, hoping to avoid labor and hasten delivery. However, the obstetrician advised against operative delivery because of surgical risks. She accepted the recommendation for induction of labor and requested early labor epidural analgesia, which was initiated uneventfully. The first stage of labor lasted 45 hours and was complicated by maternal fever and tachycardia, requiring antibiotics for presumed chorioamnionitis. Effective patient-controlled epidural analgesia was maintained throughout labor, requiring one top-up dose at 33 hours.

The second stage of labor was difficult, lasting 7 hours. Breech extraction was extremely challenging because of incomplete breech presentation and head entrapment owing to fetal hydrocephalus. Delivery was facilitated by manual manipulation using ultrasound guidance followed by transvaginal cephalocentesis to reduce hydrocephalus and permit delivery of the head. The anesthesia team provided additional analgesia for breech delivery. The total induction time was 52 hours. Family members remained present throughout her labor and delivery. After delivery, the patient held her baby, requested remembrance photography, and had her baby stay in a bassinet by her bedside for several hours. Holly declined autopsy but consented to cephalocentesis fluid analysis. She remained hospitalized for 3 days because of postpartum preeclampsia.

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CASE B

Jennifer (pseudonym), a 31-year-old G1P0 woman with a 5-year history of infertility, was initially referred to a maternal-fetal medicine consultant at 20 weeks, 4 days gestational age for fetal anomalies, including severe hydrocephalus and hypoplastic left heart syndrome. The patient and her husband initially considered medical termination of the pregnancy, but after obtaining counsel from numerous subspecialists (including traveling out of state), they chose to continue the pregnancy, planning to deliver vaginally. She hoped for an unmedicated birth without IV cannula and immediate skin-to-skin contact with her baby for as long as possible after delivery. She did not want continuous electronic fetal monitoring, yet wanted her obstetrician to intervene aggressively (including urgent cesarean delivery) if intermittent fetal monitoring suggested asphyxia. She was admitted at 37 weeks, 1 day gestational age, for induction of labor. Given the presence of severe fetal hydrocephalus (9.8 cm biparietal diameter), the obstetrician was doubtful that vaginal delivery would be successful but honored the patient’s preference for labor induction. Jennifer declined the obstetrician’s offer of ultrasound-guided cephalocentesis to facilitate delivery because she did not want to risk a potentially fatal fetal in utero procedure. The anesthesiology team spent ample time with the patient, her husband, parents, and stillbirth and bereavement doula to clearly discern her values and goals. Options for labor analgesia and cesarean delivery anesthesia were presented and discussed.

There was arrest of cervical dilation at 5 cm on the third induction day, at which time Jennifer accepted the recommendation for cesarean delivery. She wished both her husband and doula to be present and that photos be taken during and after delivery. At the moment of delivery, the viewing window of the Seattle surgical drape (Microtek Medical, Inc., Columbus, MS) was pulled upward, allowing the patient and her husband to witness the live birth of their daughter. After a brief assessment by the neonatologist, the baby was placed directly on the mother’s chest, and she held her newborn baby for the remainder of the surgery. Immediately after surgery, Jennifer was returned to her room to recover among gathered family members. Together, they spent the next hours holding and bonding with their daughter. A personal photographer captured many images of the couple embracing their child from birth until the moment of death 5 hours later. The parents conveyed deep gratitude to the medical team for supporting them and honoring their values and goals.

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DISCUSSION

Definitions, Distinctions, Incidence, and Legal Concerns

Terminology around spontaneous or induced fetal demise can be contradictory, ambiguous, and confusing.6 As defined in contemporary literature, miscarriage, or spontaneous abortion, before viability, is distinct from stillbirth (intrauterine fetal demise), which describes fetal death from 20 weeks of gestational age. The rate of early stillbirth (20–27 weeks’ gestation) in the United States is estimated at 3.1 per 1000 births and late stillbirth (28 weeks or more) at approximately 3.0 per 1000 births.1 Total fetal mortality has declined nearly linearly from 1985 through 2006 (from 7.83 to 6.05 per 1000 pregnancies), with declining late stillbirth rates accounting for this trend.1 In the United Kingdom, late stillbirth (after 24 weeks’ gestation) has a reported rate of 3.9 per 1000 births.a

Approximately 3% of pregnancies are affected by structural anomaly or genetic birth defect,2,3 many detectable by current antenatal assessment practice. Although most are nonlethal, fetal anomalies account for nearly one-third of perinatal deaths in developed countries.7 Routine antenatal testing, including ultrasonography, has contributed to an increase in therapeutic abortions, particularly in the case of severe anomalies.8,9 The American College of Obstetricians and Gynecologists recommends 18 to 20 weeks’ gestation as optimal timing for a single screening ultrasound examination to survey fetal anatomy and accurately estimate gestational age. At that time, imaging of anatomically complex organs can detect many malformations at a time when therapeutic abortion may still be an option.10 Diagnosis of abnormalities may be delayed for a variety of reasons and accounts for most late terminations.11,12

Unlike uniform statutes in other countries,a,9 termination laws vary state-by-state in the United States. As of late 2014, 21 states prohibit abortions after “viability,” 18 states after 20 to 24 weeks’ gestation and 3 during the “third trimester.”b In keeping with the 1973 United States Supreme Court decision in Roe v. Wade, all these state prohibitions have exceptions for maternal life and health, whereas some have exceptions for fetal abnormalities, rape, and/or incest.b The number of late terminations (i.e., after 21 weeks’ gestation) remained relatively stable annually in the United States from 2001 to 2010. Rates declined slightly from 7300 to 8100 per year in the first half of that decade (1.5% of all terminations) to 6000 to 7000 per year in the second half (1.3%–1.4%).13 In contrast, most (78%) of the therapeutic terminations in France in 2007 (total 6645 or 8.1/1000 deliveries) were performed in the second or third trimester.9 Feticide (causing fetal death in utero) is often performed before induced termination of pregnancy after viability. In some countries, it is recommendeda,14 or required9,15 from 22 weeks onward to prevent live birth, mitigating emotional, ethical, and legal consequences, for both patients and providers.14,16 In the United States, decisions regarding feticide are influenced by the legal prohibition of intact dilation and extraction procedures (Partial-Birth Abortion Ban Act of 2003).16

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Obstetric Management of Stillbirth

Although >85% of women with stillbirth experience spontaneous labor within 3 weeks after diagnosis,a many women desire delivery soon after the diagnosis is made. Timeliness of delivery is not critical and should consider the mother’s preferences, medical conditions, and intrapartum history.a,8 Second-semester dilation and evacuation may be offered by experienced providers, but medical induction is more common.17 Misoprostol is the method of choice for induction for stillbirth before 24 weeks, regardless of cervical dilation.18 After 28 weeks, labor can be induced “according to usual obstetric protocols,”18 including vaginal misoprostol, high-dose oxytocin infusion, and cervical ripening with a transcervical balloon catheter.18 In a retrospective study of 74 women undergoing induction for third-trimester stillbirth (including 10 with prior cesarean delivery), all but one (arrest of cervical dilation at 6 cm in a mother with one prior cesarean delivery) delivered vaginally, and 88% delivered within 24 hours (median time to delivery, 11½ hours; maximum, 57 hours).19 Others report similar high rates of successful labor induction for third-trimester fetal demise.20–23

Induction of labor, particularly if prolonged (such as in case A), is not without maternal risk, including intrapartum fever and hemorrhage.19 Placental abruption or prolonged retention increases the risk of coagulopathy and transfusion.19,24 The risk of maternal coagulopathy is low (<10%) when delivery occurs within 4 weeks of fetal death but increases thereafter.24 A 5-year retrospective study of 522 women who experienced stillbirth (20–24 weeks) reported endometritis as the most common complication (12%).23 Coagulopathy requiring transfusion, sepsis, adult respiratory distress syndrome, and death were rare.23 In this series, 85% of women delivered within a week of diagnosis, and vaginal delivery was successful in 94% of singleton stillbirths. Severe dystocia may necessitate extreme delivery maneuvers (such as in case A) or the Zavanelli maneuver followed by cesarean delivery.25,26 Fetal destructive procedures, for example, cephalocentesis (drainage of fetal cerebrospinal fluid via transabdominal or transvaginal approach, with ultrasound guidance) or cleidotomy (surgically dividing the clavicles), have been reported either in anticipation of or response to difficult vaginal delivery.26,27 Although intended to facilitate delivery and reduce maternal morbidity, these procedures risk consequences (severe alteration of fetal appearance, reduced value of postmortem examination results, and maternal psychological repercussions) that should be discussed with the mother.26

Cesarean delivery for fetal demise is “reserved for unusual circumstances” because of potential maternal morbidity without fetal benefit.17 Even in women with up to 2 prior cesarean deliveries, induction of labor for fetal demise is generally thought to be safe, although there are insufficient data regarding safety of induction and trial of labor after cesarean delivery in women with fetal demise.a Although vaginal delivery promotes faster recovery and hospital discharge, the Royal College of Obstetricians and Gynecologists guidelines state that cesarean delivery may be clinically indicated by virtue of maternal condition or may be requested “because of previous experiences or a wish to avoid vaginal birth of a dead baby.”a In case A, Holly’s strong desire for cesarean delivery of her near-term stillborn to “get it over and done with” was discouraged, and she unfortunately experienced a long, difficult delivery with complications.

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Obstetric Management of Severe Fetal Anomalies

American College of Obstetricians and Gynecologists Practice Guidelines regarding the management of patients with fetal anomalies consider technical aspects, indications, and timing of antenatal diagnosis,17,28,29 but discussion on therapeutic intervention is limited to early termination.30 Guidelines for second-trimester abortion, first published in 2013,31 address procedures and complications, and briefly mention legal issues, but are silent on ethical, maternal decision making, and emotional/psychological issues. In contrast, the 2010 Royal College of Obstetricians and Gynecologists working group reporting on termination for fetal anomalies addresses these issues extensively.a Although many women opt to terminate pregnancies with severe life-limiting anomalies, this cannot be assumed.a,32–34 Multidisciplinary management, formal training to deliver information, and adoption of a supportive, nonjudgmental, nondirective approach are recommended.a,35,36 Perinatal palliative care as an organized mode of delivery has emerged in the past decade as an increasingly recognized beneficial alternative.37,38 However, a recent survey of American maternal-fetal medicine specialists revealed wide variation in practice.35 Only one-quarter of respondents stated they would offer nondirective counseling in cases of uniformly severe, commonly lethal (e.g., trisomy 13 or 18; alobar holoprosencephaly), or uniformly lethal (e.g., anencephaly; bilateral renal agenesis) anomalies. In contrast, 18% and 29% of maternal-fetal medicine specialists stated that they would refuse a mother’s desire for full intervention (e.g., fetal monitoring, cesarean delivery) in cases of commonly lethal and uniformly lethal anomalies, respectively.35 Most respondents would discourage intervention (66% and 73%, respectively) but would still comply with maternal request for intervention. Reluctance to intervene may be based on concerns for a neonate’s comfort during his or her brief extrauterine existence or because of a perception of maternal physical harm for the sake of little measurable fetal/neonatal benefit.36,39 These concerns may discount and neglect, however, the strong maternal desire to hold a live infant, similar to our patient in case B, even if briefly.40

Patients value unbiased information on all options for continuation of pregnancy or termination (medical or surgical) as a beneficial source of “control over an experience that is out of control.”41 Wilkinson36 warns against “fatal fetal paternalism,” making recommendations without giving women all available options or failing to respect their choices. Providers must be prepared to fully support a mother’s decision (such as Jennifer’s) to continue a pregnancy with known severe fetal anomaly and to address the neonate’s comfort and dignity, however short his or her life may be.37,38 They must also resist judging decisions that may seem at first blush to be irrational or inconsistent.

Chervenak and McCullough42,43 offer a useful ethical framework that balances fetal and maternal considerations and guides appropriate care for women whose fetuses have severe anomalies, regardless of gestational age. These guidelines consider the degree of certainty of diagnosis and severity of anomaly. The fetus with certain diagnosis and either very high probability of extrauterine death (e.g., anencephaly; triploidy) or high probability of death or severe, irreversible deficit of cognitive development capacity (e.g., holoprosencephaly; trisomy 13) may be considered a patient for whom aggressive medical intervention is not obligatory. In this case, termination of pregnancy or nonaggressive management should be discussed.35,43 When the diagnostic accuracy and lethality of the abnormality is in question, aggressive management should be discussed. The framework is proposed to enable obstetricians to responsibly reduce the current observed variation in counseling.43 Some also argue that aggressive care may be considered an option, even in cases of certain extrauterine fetal death because some mothers, for perceived psychosocial benefit, may willingly incur the risks of aggressive intrapartum therapy (e.g., urgent cesarean delivery) to increase the likelihood of a desired live birth.43,44 In this instance, the goals of care are ethically consistent with beneficence-based care.43,44

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Emotional and Psychological Effects of Stillbirth

The emotional pain of stillbirth begins at diagnosis.45 Mothers have characterized the silence during the ultrasound examination as agonizing, while they look at the screen, afraid to accept the unimaginable and waiting for someone to break the silence to confirm their worst fears. Lack of prompt, forthright discussion of findings contributes to confusion, fear, feelings of abandonment, mistrust of medical personnel, and a general sense of receiving inadequate or inappropriate care. Women voice preference for having the step-by-step ultrasound examination process explained and being included in the diagnosis discussion from the beginning.45 One study identified honesty, clarity, empathy, availability, information, and guidance as positive attributes of providers when delivering the news and the care that follows.46

After diagnosis, the time leading up to delivery is a critical period.47 Women who waited >24 hours before labor began were reported to be at approximately 5-fold higher risk of experiencing prolonged (>3 years) psychological effects compared with those already laboring at the time of diagnosis or with those who underwent expedient labor induction.48 Women have recalled the emotional difficulty of anticipating labor, recalling pleas of, “Please do something,” or “Cut me open.”45 Of note, Holly (case A) made a similar request for cesarean delivery, wishing to hasten the delivery of her stillborn child. In 2 retrospective qualitative analyses, women recalled intense loss of control during this period.45,47 In one study, all but 1 of the 21 women reported loss of autonomy and marginalization from decisions about induction of labor and most described the delay from time of diagnosis to induction as emotionally challenging, meaningless, and involuntary.47 Medical providers may instinctively attempt to protect a mother from having to make decisions during this difficult time. However, discerning and honoring a mother’s wishes helps to restore autonomy and control when a pregnancy outcome is irreversibly beyond her control, and may ultimately promote recovery. Women need guidance regarding the induction process, analgesia, mode of delivery, and planning for spending time with the newborn, creating meaningful memories, disposition of the baby’s body, and ongoing emotional/psychological support.

Stillbirth and neonatal death place mothers at higher risk for posttraumatic stress and postpartum depression49–51 and more prolonged grief compared with those with early miscarriages.49 Less is known about the effects of stillbirth on the father.52 Relationships between couples are strained by stillbirth.53,54 In one large long-term follow-up study of relationship survival after 7770 pregnancies, couples experiencing stillbirth were at 40% higher risk of their relationship ending compared with those experiencing live birth.54 Yet, stillbirth can bring some couples closer together.54 Parents who experience stillbirth should be referred to counseling services and support groups.a Although there is contradictory evidence,55 seeing, holding, and bonding with the stillborn baby appear to be protective against long-term emotional and psychological sequelae,46,48 especially with stillbirth after 37 weeks.56 Holly’s (case A) wish to spend time with her baby after delivery was respected. Current recommendations are that providers avoid persuading parents to have contact with their stillborn baby but that they strongly support such desires if expressed.a Finally, women with stillbirth report that it is emotionally stressful to be present on the same nursing unit as women with normal pregnancies and healthy newborn babies.46,47 Jennifer (case B) recalled that the most traumatic experience was being transported, holding her deceased daughter, through the waiting area filled with happy visitors, one of whom congratulated her. Hospitals and providers should consider providing a comfortable room with space for family members, ideally separated from the joyful sights and sounds surrounding healthy newborns.

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Emotional and Psychological Effects of Severe or Fatal Fetal Abnormalities

As with stillbirth, the diagnosis of fetal anomalies triggers intense distress in expectant mothers,2,41 regardless of severity.8 Routine ultrasound screening has developed a social meaning (an opportunity to see the baby) that dominates its medical use.2 Separate studies on low-risk women who had undergone termination for fetal anomalies in the United States41 and Ireland8 explored their experiences around learning the diagnosis, decision making, termination, grief, emotional support, and the aftermath. Many reported being completely unprepared for the diagnosis, having eagerly approached the ultrasound examination anticipating meeting their baby, learning the sex, and receiving reassurance.8,41 Uncomfortable silence during the examination, delays in delivering news and specialist referral, and insufficient information all amplified anxiety and stress.8

Unlike the irrevocable state of stillbirth, the diagnosis of fetal anomaly thrusts a host of very complex, difficult decisions on expectant parents, including whether to continue the pregnancy.2,8,41,57–59 These parents are woefully unprepared for decision making, which they find overwhelming, painful, and time-pressured in nature.41,59 “Honestly, you are so grief stricken and in a fog that nothing registers.”41 Support is essential for these vulnerable women who are grieving, feeling responsible, and stranded in the “stigmatizing intersection of disability and abortion.”57 Jennifer expressed the difficulty of this predicament, actively seeking medical second opinions, and involving her own stillbirth and bereavement specialist doula to help achieve the birth experience she desired.

For those considering termination of a pregnancy with severe fetal anomalies, access to diagnostic, termination, and emotional support services is variable and hinges on physician availability, insurance coverage restrictions, and legal statutes that restrict the right to termination.41 For many patients, lack of access to services necessitates travelling great distances. Insurance issues, including claim denial and use of stigmatizing language, may throw salt on a painful wound.41 Many mothers perceive providers’ moral qualms about termination as the basis for referral, amplifying their distress and anguish.41 Of note, a subset of these women experience long-term psychiatric morbidity, including persistent pathological levels of posttraumatic stress symptoms, depression, and anxiety disorders.60–62 Accordingly, caregivers should manage these women with compassion, empathy, and professionalism and should provide them with guidance, support, comprehensive care, education, honesty, nondirectiveness, nonjudgment, validation of grief, and separation from the general (healthy) maternity population.41

It cannot be assumed that all women carrying fetuses with severe or potentially lethal anomalies will choose termination.a,32,33 When offered the alternative of comprehensive perinatal palliative care37,38 at time of diagnosis, 8 of 20 women carrying fetuses with severe anomalies opted not to terminate pregnancy, 6 delivered live infants (one by emergency cesarean for abnormal fetal heart tracing, at the mother’s request) with survival ranging from 1½ hours to 3 weeks.63 The troubling experiences of 3 women carrying fetuses with trisomy 13 or 18 are noteworthy.40 Each desired to continue her pregnancy, despite the obstetricians’ recommendations to terminate. None desired nonbeneficial or burdensome interventions for their babies nor did they want their babies to suffer. They simply wanted “to meet and to hold their babies and to be a family.” Each dealt with insensitive medical personnel who lacked empathy. Abandonment was a common experience, and each described the efforts they made to seek supportive and caring physicians. One fetus died in utero, and 2 babies died after birth (at 3 and 80 days of life). One mother, an anesthesiologist herself, was denied her preference for cesarean delivery. Remarkably, attendant medical staff refused to resuscitate her infant; prompting her husband, also an anesthesiologist, to bag-mask ventilate their daughter back to life. She described the meaningful moments she, her husband, and son spent bonding with her daughter, whose 3 days of life were valuable, purposeful, and by her description, “the best days of our family’s life.” Who can know or judge this experience?

Conventional use of the word “lethal” to describe many severe anomalies compounds the challenging decisions many women face. Although still commonly used, it is, in fact, variably defined, referring to a heterogeneous group of prenatal conditions, many of which are not uniformly lethal.64–68 Wilkinson et al.64 argue that the term, in this context, is ambiguous and often conceals provider value judgments. Because “lethal anomaly” has a deeply powerful meaning for affected women, its use risks overshadowing the real uncertainties around prognosis, contributing to misunderstanding, miscommunication, and even misleading or pressuring women’s decision making.64 Although the term lethal is best avoided, and the term life-limiting preferred, some urge focusing discussion strictly on diagnosis, prognosis, uncertainty, options, and burden of treatment, all in a nondirective, value-neutral manner.64 Factors affecting progress in this area may include evolving social norms and “value perspectives on the meaning of even the most vulnerable and brief of lives,” tension between curing and healing/supporting paradigms, lags between medical/technological advances and the spread of new knowledge, and perinatal palliative care’s recent debut as a valuable alternative.68

Weighing the psychological, emotional, and physical benefits and risks of live birth and obstetric interventions is complex; ultimately, it is a value judgment36 best reserved for the mother after honest and open discussion with her health care providers. The complex and dynamic intersection of values, emotions, and the resulting medical course is exemplified in case B. Jennifer desired vaginal delivery, minimal interventional induction of labor (no IV catheter, no continuous monitoring, no systemic or neuraxial analgesia), yet she desired rapid obstetric intervention (including emergency cesarean delivery) if indicated by intermittent fetal assessment. Despite doubts regarding success of labor induction, her obstetrician honored Jennifer’s primary goal to hold her living newborn, a goal that was ultimately realized.

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Analgesic and Anesthetic Options

Evidence regarding the maternal pain experience and analgesic interventions during medical labor induction for stillbirth or late termination is meager. Some studies attest to the severe pain some women experience during current medical induction techniques.69,70 IV opioids and neuraxial analgesia have been reported with high-dose oxytocin during mid-trimester induction for fetal demise71 and with second- and third-trimester prostaglandin inductions for fetal demise and termination for anomalies.70,72 Little is currently known about the pain experienced during third-trimester medical inductions, when fetal size may contribute to lengthier labors and more pain. Parenteral opioids may be an appealing option for stillbirth because adverse fetal effects are irrelevant; however, comparisons with neuraxial analgesia regarding analgesic effectiveness and effects on labor and delivery outcomes are lacking. A single 1991 study of 22 women undergoing oxytocin induction for stillbirth with epidural analgesia reported shorter first stage, faster rate of cervical dilation, and unchanged second-stage duration compared with 22 matched controls receiving IV opioid analgesia.73 The investigators concluded that epidural analgesia may provide emotional and physical benefits compared with parenteral opioids during the distressing experience of delivering a dead fetus.73 American and British guidelines support availability of neuraxial analgesia for these women,a,17 including initiation before induction of labor. Coagulopathy and sepsis should be considered when the fetal death to labor interval is >4 weeks or if preeclampsia or placental abruption are suspected.a,24 The use of a birthing pool during labor for stillbirth at 38 weeks has been reported,74 serving as a reminder that nonmedical approaches to analgesia may help attenuate pain and anxiety during labor.

A retrospective review of 143 Japanese women undergoing prostaglandin labor induction for fetal anomalies (20–35 weeks’ gestation) found no differences in outcomes in women who received epidural analgesia (45%) and those who received patient-controlled IV sufentanil analgesia.75 In a series of 60 women undergoing prostaglandin-induced second-trimester termination for fetal anomalies, women were initially given patient-controlled IV analgesia (fentanyl or morphine regimens) and were offered “more invasive” methods only if they experienced inadequate analgesia.76 Analgesia and satisfaction were incomplete, and side effects (nausea, vomiting, pruritus, sedation) were common.76 In France, anesthesiologists are routinely involved in analgesia for late terminations.9 In a 2010 survey of French obstetric anesthesia teams, >90% of responding centers reported neuraxial analgesia use in >80% of cases.9 Centers either reported using neuraxial analgesia regimens that mimicked those used for healthy term pregnancies or included higher drug doses or additives to enhance analgesia. The majority of centers also routinely offered maternal anxiolytic/sedative medications for feticide and for delivery.9

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CONCLUSIONS

For the eager, expectant mother, the diagnosis of stillbirth or of severe fetal anomalies comes as an unexpected and deeply traumatic loss. The decision making and events that rapidly follow diagnosis are confusing and difficult to navigate for these vulnerable patients. The need for knowledge and a sense of control are great. Medical personnel underappreciation of the profound maternal effects, risks to autonomy, and need for support only compound patient vulnerability. For the health care providers, unfamiliarity with the spectrum of obstetric options and issues, the diversity of possible maternal preferences, and the legal and ethical aspects surrounding this scenario may limit their ability to deliver care that is fully empathic, nondirective, and value-neutral. In this article, we present current evidence to enable anesthesia providers to better understand, support, and advocate for women dealing with stillbirth or the diagnosis of fetal anomalies late in pregnancy. In addition to our role offering safe and effective analgesia for the pain of induced labor, and anesthesia for cesarean delivery, the obstetric anesthesia provider is uniquely positioned to establish supportive and healing relationships with these women and their families, who feel very alone in their suffering. It also serves to highlight gaps in anesthesiology knowledge around this experience, pointing to opportunities for rigorous study to answer the many unexplored issues.

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DISCLOSURES

Name: Mary DiMiceli-Zsigmond, MD.

Contribution: This author helped write the manuscript.

Attestation: Mary DiMiceli-Zsigmond approved the final manuscript.

Name: Amanda K. Williams, MD.

Contribution: This author helped write the manuscript.

Attestation: Amanda K. Williams approved the final manuscript.

Name: Michael G. Richardson, MD.

Contribution: This author helped write the manuscript.

Attestation: Michael G. Richardson approved the final manuscript.

This manuscript was handled by: Cynthia A. Wong, MD.

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FOOTNOTES

a Royal College of Obstetricians and Gynaecologists. RCOG Green-top Guideline No. 55: Late Intrauterine Fetal Death and Stillbirth. Oct 2010. http://www.rcog.org.uk/womens-health/clinical-guidance/late-intrauterine-fetal-death-and-stillbirth-green-top-55. Accessed March 22, 2015.
Cited Here...

b Guttmacher Institute. State Policies in Brief: State Policies on Later Abortions. March 1, 2015. http://www.guttmacher.org/statecenter/spibs/spib_PLTA.pdf. Accessed March 22, 2015.
Cited Here...

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REFERENCES

1. MacDorman MF, Kirmeyer SE, Wilson EC. Fetal and perinatal mortality, United States, 2006. Natl Vital Stat Rep. 2012;60:1–22
2. Lalor J, Begley CM, Galavan E. Recasting Hope: a process of adaptation following fetal anomaly diagnosis. Soc Sci Med. 2009;68:462–72
3. Center of Disease Control. . Update on overall prevalence of major birth defects—Atlanta, Georgia, 1978–2005. MMWR Morb Mortal Wkly Rep. 2008;57:1–5
4. Chestnut D, Polley LS, Tsen LC, Wong CA Chestnut’s Obstetric Anesthesia: Principles and Practice. 20145th ed. Philadelphia, PA Saunders Elsevier
5. Rådestad I, Nordin C, Steineck G, Sjögren B. A comparison of women’s memories of care during pregnancy, labour and delivery after stillbirth or live birth. Midwifery. 1998;14:111–7
6. Grimes DA, Stuart G. Abortion jabberwocky: the need for better terminology. Contraception. 2010;81:93–6
7. Grandjean H, Larroque D, Levi S. The performance of routine ultrasonographic screening of pregnancies in the Eurofetus Study. Am J Obstet Gynecol. 1999;181:446–54
8. Lalor JG, Devane D, Begley CM. Unexpected diagnosis of fetal abnormality: women’s encounters with caregivers. Birth. 2007;34:80–8
9. Dubar G, Benhamou D. Anesthesiologists’ practices for late termination of pregnancy: a French national survey. Int J Obstet Anesth. 2010;19:395–400
10. . ACOG Practice Bulletin No. 101: ultrasonography in pregnancy. Obstet Gynecol. 2009;113:451–61
11. Benhamou D. Pain, epidural analgesia and late termination of pregnancy: a new challenge for obstetric anaesthesiologists. Int J Obstet Anesth. 2007;16:307–9
12. Matsumine R, Sumikura H. Analgesic treatment of vaginal delivery for late termination and intrauterine fetal demise during the second or third trimester of pregnancy. J Anesth. 2013;27:320–1
13. Pazol K, Creanga AA, Burley KD, Hayes B, Jamieson DJCenters for Disease Control and Prevention (CDC). Centers for Disease Control and Prevention (CDC). . Abortion surveillance—United States, 2010. MMWR Surveill Summ. 2013;62:1–44
14. Napolitano R, Thilaganathan B. Late termination of pregnancy and foetal reduction for foetal anomaly. Best Pract Res Clin Obstet Gynaecol. 2010;24:529–37
15. Dommergues M, Cahen F, Garel M, Mahieu-Caputo D, Dumez Y. Feticide during second- and third-trimester termination of pregnancy: opinions of health care professionals. Fetal Diagn Ther. 2003;18:91–7
16. Diedrich J, Drey ESociety of Family Planning. . Induction of fetal demise before abortion. Contraception. 2010;81:462–73
17. . ACOG Practice Bulletin No. 102: management of stillbirth. Obstet Gynecol. 2009;113:748–61
18. Neilson JP, Hickey M, Vazquez J. Medical treatment for early fetal death (less than 24 weeks). Cochrane Database Syst Rev. 2006;19:CD002253
19. Gawron LM, Kiley JW. Labor induction outcomes in third-trimester stillbirths. Int J Gynaecol Obstet. 2013;123:203–6
20. Gómez Ponce de León R, Wing DA. Misoprostol for termination of pregnancy with intrauterine fetal demise in the second and third trimester of pregnancy—a systematic review. Contraception. 2009;79:259–71
21. do Nascimento MI, Cunha Ade A, Oliveira S. Misoprostol use under routine conditions for termination of pregnancies with intrauterine fetal death. Rev Assoc Med Bras. 2013;59:354–9
22. Wagaarachchi PT, Ashok PW, Narvekar NN, Smith NC, Templeton A. Medical management of late intrauterine death using a combination of mifepristone and misoprostol. BJOG. 2002;109:443–7
23. Magann EF, Chauhan SP, Bofill JA, Waddell D, Rust OA, Morrison JC. Maternal morbidity and mortality associated with intrauterine fetal demise: five-year experience in a tertiary referral hospital. South Med J. 2001;94:493–5
24. Maslow AD, Breen TW, Sarna MC, Soni AK, Watkins J, Oriol NE. Prevalence of coagulation abnormalities associated with intrauterine fetal death. Can J Anaesth. 1996;43:1237–43
25. Prabhu S, Panayotidis C. Severe shoulder dystocia during delivery of a known stillbirth infant. A catastrophic scenario. J Obstet Gynaecol. 2008;28:437–8
26. Steel A, Fakokunde A, Yoong W. Management of complicated second stage of labour in stillbirths: a review of the literature and lessons learnt from two cases in the UK. J Obstet Gynaecol. 2009;29:464–6
27. Chasen ST, Chervenak FA, McCullough LB. The role of cephalocentesis in modern obstetrics. Am J Obstet Gynecol. 2001;185:734–6
28. . ACOG Practice Bulletin No. 77: screening for fetal chromosomal abnormalities. Obstet Gynecol. 2007;109:217–27
29. . ACOG Practice Bulletin No. 88, December 2007: invasive prenatal testing for aneuploidy. Obstet Gynecol. 2007;110:1459–67
30. ACOG Practice Bulletin. . Clinical management guidelines of obstetrician-gynecologists. Number 67, October 2005. Medical management of abortion. Obstet Gynecol. 2005;106:871–82
31. ACOG Practice Bulletin. . Second trimester abortion. Obstet Gynecol. 2013;121:1394–406
32. Hewison J, Green JM, Ahmed S, Cuckle HS, Hirst J, Hucknall C, Thornton JG. Attitudes to prenatal testing and termination of pregnancy for fetal abnormality: a comparison of white and Pakistani women in the UK. Prenat Diagn. 2007;27:419–30
33. Souka AP, Michalitsi VD, Skentou H, Euripioti H, Papadopoulos GK, Kassanos D, Messinis IE, Salamalekis EE. Attitudes of pregnant women regarding termination of pregnancy for fetal abnormality. Prenat Diagn. 2010;30:977–80
34. Hassed SJ, Miller CH, Pope SK, Murphy P, Quirk JG Jr, Cunniff C. Perinatal lethal conditions: the effect of diagnosis on decision making. Obstet Gynecol. 1993;82:37–42
35. Heuser CC, Eller AG, Byrne JL. Survey of physicians’ approach to severe fetal anomalies. J Med Ethics. 2012;38:391–5
36. Wilkinson D. Fatal fetal paternalism. J Med Ethics. 2012;38:396–7
37. Catlin A, Carter B. Creation of a neonatal end-of-life palliative care protocol. J Perinatol. 2002;22:184–95
38. Munson D, Leuthner SR. Palliative care for the family carrying a fetus with a life-limiting diagnosis. Pediatr Clin North Am. 2007;54:787–98, xii
39. Perritt JB, Edelman AB, Burke AE. Controversies in family planning: management of lethal fetal anomalies in the third trimester. Contraception. 2012;86:93–5
40. Thiele P, Berg SF, Farlow B. More than a diagnosis. Acta Paediatr. 2013;102:1127–9
41. McCoyd JL. What do women want? Experiences and reflections of women after prenatal diagnosis and termination for anomaly. Health Care Women Int. 2009;30:507–35
42. Chervenak FA, McCullough LB. An ethically justified practical approach to offering, recommending, performing, and referring for induced abortion and feticide. Am J Obstet Gynecol. 2009;201:560.e1–6
43. Chervenak F, McCullough LB. Responsibly counselling women about the clinical management of pregnancies complicated by severe fetal anomalies. J Med Ethics. 2012;38:397–8
44. Spinnato JA, Cook VD, Cook CR, Voss DH. Aggressive intrapartum management of lethal fetal anomalies: beyond fetal beneficence. Obstet Gynecol. 1995;85:89–92
45. Rådestad I, Malm MC, Lindgren H, Pettersson K, Larsson LL. Being alone in silence—mothers’ experiences upon confirmation of their baby’s death in utero. Midwifery. 2014;30:e91–5
46. Gravensteen IK, Helgadóttir LB, Jacobsen EM, Rådestad I, Sandset PM, Ekeberg O. Women’s experiences in relation to stillbirth and risk factors for long-term post-traumatic stress symptoms: a retrospective study. BMJ Open. 2013;3:e003323
47. Malm MC, Rådestad I, Erlandsson K, Lindgren H. Waiting in no-man’s-land—mothers’ experiences before the induction of labour after their baby has died in utero. Sex Reprod Healthc. 2011;2:51–5
48. Rådestad I, Steineck G, Nordin C, Sjögren B. Psychological complications after stillbirth–influence of memories and immediate management: population based study. BMJ. 1996;312:1505–8
49. Theut SK, Pedersen FA, Zaslow MJ, Cain RL, Rabinovich BA, Morihisa JM. Perinatal loss and parental bereavement. Am J Psychiatry. 1989;146:635–9
50. Hughes PM, Turton P, Evans CD. Stillbirth as risk factor for depression and anxiety in the subsequent pregnancy: cohort study. BMJ. 1999;318:1721–4
51. Heazell AE, Leisher S, Cregan M, Flenady V, Frøen JF, Gravensteen IK, de Groot-Noordenbos M, de Groot P, Hale S, Jennings B, McNamara K, Millard C, Erwich JJ. Sharing experiences to improve bereavement support and clinical care after stillbirth: report of the 7th annual meeting of the International Stillbirth Alliance. Acta Obstet Gynecol Scand. 2013;92:352–61
52. Cacciatore J, Schnebly S, Froen JF. The effects of social support on maternal anxiety and depression after stillbirth. Health Soc Care Community. 2009;17:167–76
53. Avelin P, Rådestad I, Säflund K, Wredling R, Erlandsson K. Parental grief and relationships after the loss of a stillborn baby. Midwifery. 2013;29:668–73
54. Gold KJ, Sen A, Hayward RA. Marriage and cohabitation outcomes after pregnancy loss. Pediatrics. 2010;125:e1202–7
55. Hughes P, Turton P, Hopper E, Evans CD. Assessment of guidelines for good practice in psychosocial care of mothers after stillbirth: a cohort study. Lancet. 2002;360:114–8
56. Rådestad I, Surkan PJ, Steineck G, Cnattingius S, Onelöv E, Dickman PW. Long-term outcomes for mothers who have or have not held their stillborn baby. Midwifery. 2009;25:422–9
57. Fisher J. Termination of pregnancy for fetal abnormality: the perspective of a parent support organisation. Reprod Health Matters. 2008;16:57–65
58. Gammeltoft T, Tran MH, Nguyen TH, Nguyen TT. Late-term abortion for fetal anomaly: Vietnamese women’s experiences. Reprod Health Matters. 2008;16:46–56
59. Hunt K, France E, Ziebland S, Field K, Wyke S. ‘My brain couldn’t move from planning a birth to planning a funeral’: a qualitative study of parents’ experiences of decisions after ending a pregnancy for fetal abnormality. Int J Nurs Stud. 2009;46:1111–21
60. Kersting A, Kroker K, Steinhard J, Hoernig-Franz I, Wesselmann U, Luedorff K, Ohrmann P, Arolt V, Suslow T. Psychological impact on women after second and third trimester termination of pregnancy due to fetal anomalies versus women after preterm birth–a 14-month follow up study. Arch Womens Ment Health. 2009;12:193–201
61. Korenromp MJ, Page-Christiaens GC, van den Bout J, Mulder EJ, Visser GH. Adjustment to termination of pregnancy for fetal anomaly: a longitudinal study in women at 4, 8, and 16 months. Am J Obstet Gynecol. 2009;201:160.e1–7
62. Kersting A, Kroker K, Steinhard J. Psychiatric morbidity after termination of pregnancy for fetal anomaly. Am J Obstet Gynecol. 2010;202:e6
63. Breeze AC, Lees CC, Kumar A, Missfelder-Lobos HH, Murdoch EM. Palliative care for prenatally diagnosed lethal fetal abnormality. Arch Dis Child Fetal Neonatal Ed. 2007;92:F56–8
64. Wilkinson D, de Crespigny L, Xafis V. Ethical language and decision-making for prenatally diagnosed lethal malformations. Semin Fetal Neonatal Med. 2014;19:306–11
65. Wilkinson DJ, Thiele P, Watkins A, De Crespigny L. Fatally flawed? A review and ethical analysis of lethal congenital malformations. BJOG. 2012;119:1302–8
66. McMann CL, Carter BS, Lantos JD. Ethical issues in fetal diagnosis and treatment. Am J Perinatol. 2014;31:637–44
67. Nelson KE, Hexem K, Feudtner C. Inpatient hospital care of children with trisomy 13 and trisomy 18 in the United States. Pediatrics. 2012;129:1–8
68. Berg SF, Paulsen OG, Carter BS. Why were they in such a hurry to see her die? Am J Hosp Palliat Care. 2013;30:406–8
69. Prairie BA, Lauria MR, Kapp N, Mackenzie T, Baker ER, George KE. Mifepristone versus laminaria: a randomized controlled trial of cervical ripening in midtrimester termination. Contraception. 2007;76:383–8
70. Brouns JF, van Wely M, Burger MP, van Wijngaarden WJ. Comparison of two dose regimens of misoprostol for second-trimester pregnancy termination. Contraception. 2010;82:266–75
71. Frölich MA, Esame A, Warren Iii WM, Owen J. High-dose oxytocin is not associated with maternal temperature elevation: a retrospective cohort study of mid-trimester pregnancy with intrauterine fetal demise. Int J Obstet Anesth. 2011;20:30–3
72. De Heus R, Graziosi GC, Christiaens GC, Bruinse HW, Mol BW. Medical management for termination of second and third trimester pregnancies: a comparison of strategies. Eur J Obstet Gynecol Reprod Biol. 2004;116:16–21
73. Lurie S, Blickstein I, Feinstein M, Matzkel A, Ezri T, Soroker D. Influence of epidural anaesthesia on the course of labour in patients with antepartum fetal death. Aust N Z J Obstet Gynaecol. 1991;31:227–8
74. Stocks LP, Rowland JS, Martindale EA, Heazell AE. The use of the birthing pool after a diagnosis of stillbirth. J Obstet Gynaecol. 2010;30:200–1
75. Mazouni C, Guidicelli B, Gamerre M, Voiret C, Pellegrin V. Influence of epidural analgesia on labor in mid and late termination of pregnancy: an observational study. Int J Obstet Anesth. 2007;16:383–4
76. Castro C, Tharmaratnam U, Brockhurst N, Tureanu L, Tam K, Windrim R. Patient-controlled analgesia with fentanyl provides effective analgesia for second trimester labour: a randomized controlled study. Can J Anaesth. 2003;50:1039–46
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