“Incompatible with life.”
Dr. Hansen’s last three words hung in the air like toxic, heavy smog, making it difficult for me to breathe. I glanced over at Marcus to see if perhaps I had misunderstood the phrase. No luck; my husband also had a look of desperate confusion spreading over his face. I hadn’t heard wrong. But how could it be possible? My baby was very much alive, and she proved the fact by delivering a sharp poke to my ribs right then and there. How could there be something so desperately wrong that she could be considered incompatible with life? I understood what Dr. Hansen had explained about a broken brain, heart, and intestines—but I could not apply those ideas to the active little person inside of me.
It couldn’t be possible. “I know this is very hard to hear, Mr. and Mrs. James, but we are going to have to make some important decisions very soon. Your pregnancy is already at 18 weeks, so we only have three weeks before it would become difficult to terminate. I understand that you will need some time to process this in private, but can we set a follow up-appointment for a week from now?”
“Terminate? You mean abortion, right?” Marcus spoke the words that had become stuck in my throat.
“Yes, technically, it would be an abortion,” the words sounded cold and harsh but I forced myself to pay attention. “But in these cases we generally consider it to be an extremely premature induced delivery. It would mean that you would not have to prolong the inevitable if you did not want to. You could think of it as turning off the life support for someone who is terminally ill and allowing nature to take its course.”
“And if we decide to continue the pregnancy?” Marcus’ voice shook a little as he continued this surreal conversation. I was always amazed at the calm way my husband could handle difficult situations, but this seemed to be taking a toll on his confidence as well. “Is there any danger for Kate if we decide to continue?”
“No more danger than any typical pregnancy and delivery. There are always risks with pregnancy . . . there’s eclampsia, DIC, uterine hemorrhage—rare things, but not outside of the scope of possibility. That is one of the reasons why many parents in your situation choose to end their pregnancy early. There is no reason for you to suffer by prolonging the inevitable. Now, as I said, I want to give you two some time to think about all of this, but we will have to move pretty quickly. Can we make an appointment for next week?” Dr. Hansen leaned back in the squeaky chair and folded his white-clad arms across his lap.
I found myself nodding numbly, then somehow the next thing I was aware of was Marcus opening the door of our car and leading me across the front porch. “I’d better call your mom and dad,” he said quietly, setting me down on our porch swing. Oh yeah, mom and dad—they were probably close to bursting, waiting to hear the news about their grandchild’s gender. This morning as I prepared for my ultrasound, I thought that would be the most important news of the day. Boy, was I wrong. What were we going to do now? I wrapped my arms around my swelling middle and let the tears begin to flow as I slowly rocked on the porch swing.
Modern pregnancies are often publicly celebrated in a blur of Instagram-perfect gender reveals and monthly chronicles of growing baby bumps. In light of all of the “pregnancy publicity,” it is sometimes hard to remember that sometimes a pregnancy is not picture-perfect. It is interesting that this culture that celebrates and publicizes wanted pregnancies is also a culture that celebrates the “right” to abortion-on-demand. Abortion is seen as a safe and simple solution to the uncomfortable situation of unwanted pregnancy and as a solution to the painful problem of an unfavorable prenatal diagnosis. With the advent of a myriad of prenatal diagnostic testing options, from alpha-fetoprotein screening to 4D ultrasounds, there is an increased potential that a serious anomaly will be discovered prenatally. In this situation, even parents who would describe themselves as pro-life might feel as if termination of the pregnancy is the best option for themselves and their child. There is, however, an alternative model for supporting families through the journey of pregnancy and parenting a baby with a serious anomaly. This model is known as perinatal palliative care (PPC).
Using abortion as a solution for unfavorable prenatal diagnosis only serves to compound a difficult situation through the logic that inducing death prematurely is a way to circumvent pain and grief. The beauty of PPC is that it provides a way to celebrate life, even when that life may be very short.
Why do obstetricians often recommend termination of pregnancy for fetal anomalies (TOP-FA)? One reason often given for TOP-FA is that it can prevent a baby with severe anomalies from suffering through birth and a painful natural death. In this way, TOP-FA is presented as the most loving choice that parents can make for their unborn fetus. No parent wants to see their child suffer unnecessarily. However, this perspective fails to take into account the pain that an unborn child may suffer through an abortion procedure. Just because an individual cannot communicate regarding their pain does not mean that they are not experiencing pain. So, depending upon the type of procedure employed and whether anesthesia is administered to the unborn child, the use of abortion to truncate a child’s life of suffering may actually inflict more pain and distress on that child.
Another reason given for TOP-FA is that it can stop parents’ emotional pain and suffering, bring closure, and allow them to start the healing process. Wellmeaning medical professionals may often tell parents “that they should terminate the pregnancy and ‘start again.’” There is no doubt that a pregnancy complicated by fetal anomaly is a tragic and heartbreaking situation for parents, but does it follow that termination of that pregnancy is the best route to a family’s emotional healing from that tragedy?
A study of women in the Netherlands found that “termination of pregnancy because of fetal anomaly . . . may cause sustained psychological morbidity.” The study identified feelings of grief and guilt in women, and found that 17.3% of the participants even showed pathological scores for post-traumatic stress 2–7 years after their pregnancy termination. Another study compared women who experienced TOP-FA with women who experienced the premature birth of their baby. This study found that the women who had underwent TOP-FA had a higher incidence of psychiatric disorders than the women in the comparably high-stress situation of premature birth. Terminating an emotionally difficult pregnancy is not a shortcut through the grieving process. Unfortunately, the experience of fathers who experienced the loss of their child due to TOP-FA has not been adequately studied, but it is safe to assume that fathers also are likely to experience serious emotional distress related to this traumatic event.
Termination may also be encouraged because it is the easiest option for the healthcare team, since families who choose to continue their pregnancy in spite of poor prenatal diagnosis require much more support than those with typically developing pregnancies. A study of the experiences of women who received a diagnosis of fetal malformations found that “most of the women who expected a baby with an abnormality experienced the information given as insufficient, often misleading, conflicting, or incoherent, and sometimes negative.” Other research has found that in instances of bad news during prenatal care “physicians receive little or no training in communicating bad news, and they generally feel quite uncomfortable about doing so.” Caring for a maternal-fetal dyad in the setting of an unfavorable prenatal diagnosis can undoubtedly be a difficult emotional experience for healthcare professionals as well. It is likely that sometimes parents are counseled toward TOPFA because the healthcare team does not feel that it has adequate knowledge or resources to support families through this challenging experience.
When termination is presented as the only option, parents may not feel that they would have much support to help them through the remainder of their pregnancy, if they chose to continue it. Kevin McGovern notes,
In these circumstances, a health professional may also press the parent(s) to agree almost immediately to the termination, even though the parents really cannot think clearly because they have just been told devastating news about their unborn child. Other times, the option of continuing the pregnancy is mentioned, but it is presented as an inferior option which would only appeal to people who are themselves deficient in some way. For example, terminating the pregnancy might be presented as decisive action to end a nightmare, whereas continuing the pregnancy could be presented as the only option for those who are incapable of decisive action.
When serious fetal anomalies are discovered, it is often during a routine ultrasound preformed at 16–20 weeks of pregnancy. Because of this, healthcare professionals may feel pressure to have their patient make a quick decision about termination, as many states have laws which restrict abortion after 20 weeks.
The healthcare team’s ethical responsibility to the child is to treat her with respect and dignity in its life and potential death. Just because this person may only experience life from the inside of its mother’s womb does not make the child’s life worthless. The model of perinatal palliative care recognizes this, and seeks to maximize the potential of the infant’s life.
The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Palliative care differs from hospice in that palliation is appropriate even at the beginning of an illness and is compatible with life-extending treatments. (The title of perinatal palliative care is preferred in this paper, but some of the literature referenced may refer to the same type of program as “perinatal hospice.”)
The hallmark of palliative care is its interdisciplinary approach and its goal of enhancing the patient’s (and family’s) quality of life. The palliative team takes a holistic approach to caring for the patient and their family, including other disciplines such as social work and chaplaincy in the interdisciplinary team. Palliative care is life-affirming while, at the same time, considering death to be a natural process. In the perinatal and neonatal setting, “palliative care is an entire milieu of care to prevent and relieve infant suffering and improve the conditions of the infant’s living and dying. It is a team approach to relieving the physical, psychological, social, emotional, and spiritual suffering of the dying infant and the family.”
Palliative care can be seen as expert symptom-directed care, with all of the energies of the healthcare team devoted to reducing suffering. This concept is supported by leading organizations driving the practice of high-quality neonatal care. The National Association of Neonatal Nurses’ (NANN) Position Statement on Palliative and End-of-Life Care for Newborns and Infants states that “palliative care orders to manage discomfort, pain, and other distressing symptoms . . . [should use] the least invasive effective route of delivery available” and that “comfort measures such as holding and kangaroo care” (skin-to-skin contact with parents) should be encouraged. NANN also recommends “ongoing assessment of pain and sedation with a validated instrument” and “discontinuation of painful assessments.” All of these interventions are performed with the ultimate goal of maximum comfort for the infant. NANN even goes so far as to recommend that “if the family is not available, nurses or other care providers should hold and comfort the infant.”
Once the infant is born, the PPC team has the ethical obligation to assure that the infant’s basic needs for comfort are met. This may include basic fluids and nutrition, warmth, oxygen delivered via nasal cannula or “blow by” (invasive methods of ventilation are generally considered inappropriate in palliative care), pain control, skin care, and maximal parental contact. In a PPC model, care is never withdrawn or withheld. Care is an ongoing act that continues before the child is born, and even after the child dies. However, the focus of care in a PPC model is comfort and not healing.
During the pregnancy, birth, and life of a child with severe anomalies, it is ethically appropriate to forgo intensive care measures to prolong their life, if those measures are deemed futile or the parents decline these measures. The goal of palliative care is to provide the most peaceful life and death as possible. To this end, all interventions should be performed with this goal in mind. Often, infants with severe anomalies may not be able to eat by mouth. The parents and palliative care team should discuss the appropriateness of artificially administered nutrition and hydration (ANH) before the infant’s birth. Since every case is different, the appropriateness of different methods of ANH may vary between cases. The refusal of ANH might also be appropriate since refusing food and drink are considered to be a natural part of the dying process and can actually increase the dying child’s comfort.
A palliative care model also provides parents with the ability to participate in comforting their child through painful procedures and any discomfort associated with the dying process. If a parent’s goal is to reduce pain and suffering for their child, members of the perinatal palliative care team will help ensure that goal is met. Terminating the pregnancy does not give parents that option.
Another benefit for parents who choose PPC is that they can be given control over many aspects of the birth, life, and death of their child. Customized birth plans can include provisions like forgoing fetal heart rate monitoring or allowing a grandmother to help with the infant’s bath. PPC also provides flexibility in situations where the exact prognosis of a child’s life is unknown. It leaves the door open for more intensive care to be provided if the infant is more vigorous than expected, while still allowing for the possibilities of the “worst-case scenario.” One of the most important aspects of PPC is creating these advance-directive- type plans for care. Knowing what to expect can be empowering to parents as they anticipate this difficult and painful experience. “Without a plan, parents are often forced to make difficult decisions in the moment, when they are sleep-deprived and emotionally spent.” Having a PPC plan in place can free parents to savor precious moments with their child instead of having to make difficult decisions in the spur of the moment. Decisions about whether to attempt resuscitation or administer artificial nutrition and hydration can be made outside of the pressure of the hospital setting.
In addition, a PPC model provides families with the time to be able to begin a healthy grieving process by making plans for their child’s birth, life, and death. Some parents express that they see continuing their pregnancy as a way to give their child as long and happy a life as possible. Amy Kubelbeck, whose son Gabriel was diagnosed with a lethal heart anomaly at 25 weeks gestation, puts it this way:
There is no shortcut through grief, as much as contemporary society would wish there to be. Parents who continue their pregnancy receive the gift of time for anticipatory grief, and they can find solace in the knowledge that they protected their baby and gave their baby—and themselves—the gift of a peaceful, natural death. And parents may receive greater understanding and support from family and friends, who otherwise may dismiss a terminally ill but unseen baby as simply a forgettable accident of nature.
With PPC, parents can take the remainder of their pregnancy to create special memories with their unborn child by, for example, taking pictures, playing music, “meeting” grandparents, or even taking their child with them on a trip. PPC should not stop any routine care from occurring (such as ultrasound scans), but instead maximize parent’s opportunities to experience their child who may only be alive through the pregnancy and perhaps a short time after birth.
The responsibility of supporting the goals of PPC lies with every member of the perinatal care team, but nurses often find themselves in the unique position of spending a great amount of time with their patients and their families. Because of this, “the ultimate success of perinatal hospice depends on the patience, sensitivity, and sense of interdependence of nurses at the bedside, as well as their willingness to facilitate the mourning process.” Nurses are often responsible to explain to parents what they should expect throughout the labor and delivery process. A special prenatal class can be set up for a PPC case, so that the parents can learn about labor and delivery with special attention to the different concerns that they are sure to have. At delivery, nurses can help the family make special memories of their child such as taking pictures or taking handprints and footprints. Nurses should direct parents towards comforting and caring tasks they can perform for their baby. When the infant’s death is imminent, the nurse can help prepare the family for what they might expect to see. Also important is the role of the nurse in assessing the infant and assuring that their comfort and dignity are respected. If the infant is expected to live long enough for discharge from the hospital, sometimes the goals of palliation might require nurses to think outside of the box when helping parents develop ways for caring for their child at home. After discharge, a nurse may perform intermittent visits to monitor the infant’s status and assure that the goals of the palliative care plan are being met. In all of these stages of care, nurses must be flexible, compassionate, and creative.
PPC has benefits for the whole healthcare team. Anticipatory planning can help healthcare professionals prepare for a situation that might be emotionally difficult for them. Also, having advance directives in place assures that the team will not be required to perform potentially inappropriate interventions on a critically ill neonate. Having a palliative care plan can also potentially be financially prudent, since it can streamline services, and ensure that unnecessary interventions are not performed. Since PPC is a relatively new concept, these benefits to the healthcare team have not yet been well studied, but the benefits have been evident in other pediatric palliative care services.
A recent proposal has been made in Great Britain that parents of fetuses with severe defects should be encouraged to carry their pregnancies to term for the sole purpose of harvesting the baby’s organs once they are born. This strictly utilitarian reason for continuing a pregnancy is problematic because it can cause these disabled babies and the mothers who are carrying them to be seen as a commodity. This is further complicated because declaring brain death is usually the trigger for the harvesting of organs, but regarding infants, “Brain death as the irreversible and permanent loss of cerebral and brainstem function, is relatively uncommon among newborns who need life support.” This means that infants are not generally considered good organ donor candidates, since they are not often declared “brain dead” while on life support. It is chilling to consider that persons who cannot be declared dead would be subject to organ harvesting. Although parents may wish to explore the possibility of donating some tissues such as umbilical cord blood, they ought not to be counseled to continue their pregnancy only to provide tissues or organs for donation. There are many other important reasons to provide parents with the options and support to continue a pregnancy instead of terminating after the diagnosis of fetal abnormalities.
In encouraging parents to terminate the life of a fetus because of its anomalies, the healthcare professional is making some important moral and ethical statements. Metaphysically, the underlying assumption behind the suggestion that a fetus with severe anomalies ought to be aborted is that such a fetus does not yet fully possess the rights of personhood. This reasoning seems especially relevant in cases (such as anencephaly) where the infant will never have more than a reflexive awareness of their environment. This assumption relies on the dangerous concept that personhood somehow is defined by a sliding-scale of functionality. To say that a severely disabled fetus is something less than a person begs the question of what level of function an individual must have to be considered a person. Sometimes, the concept of personhood is tied to an individual’s potential. It can be argued that since the fetus with severe anomalies lacks the potential to perform the basic functions of life on their own, that they are not fully deserving of the rights of personhood. However, an individual’s potentiality is also a sliding scale, with various contributing factors. The concept that a baby is better off dead than disabled does nothing to encourage respect and care for the disabled of our society.
One of the first ethical responsibilities of any healthcare team is to provide their patient(s) with sufficient information for them to make informed decisions regarding their care. This allows them to make truly autonomous decisions. “Encouraging families to make plans for their potentially nonviable infant while in utero is seen as a type of autonomy for the pregnant patient.” Information that needs to be provided includes detailed information about the fetal diagnosis, the certainty with which the diagnosis is made (prenatal diagnosis is often not 100% accurate), the potential prognosis and/or course of disease expected, options for the remainder of the pregnancy—including any PPC services available, and general information about community support for ill or disabled infants (if applicable to the case). If the infant is expected to live for a short period of time after birth, parents may want to tour a NICU, or speak with other medical specialists (neonatology, cardiology, GI, or neurology) to learn more about any interventions which may be appropriate for their child. They may want to speak to families who have experienced similar situations, or discuss concerns with their clergy or other counsel. The healthcare team ought to support the parents in all of these efforts, so that the parents can make truly informed decisions regarding their pregnancy.
Healthcare professionals are also ethically obligated to not abandon their patients, even if they disagree with the patient’s choices. One fear that parents who have experienced a poor prenatal diagnosis often express is that they might be abandoned by their healthcare team, especially if they sense that their primary physician does not support their decision to continue pregnancy. However, the healthcare team should show respect for their patient’s decisions, and provide support for them, even if they feel that continuing the pregnancy borders on futility. Even if there is no official PPC team available, these interventions can be performed by any healthcare team. As McGovern suggests, parents who choose to continue their pregnancy should be assured that
there is a team of health professionals who will be readily available to them and who have both the professional knowledge and the human compassion to guide them and journey with them through this experience. They must be assured that they will be looked after, and that their unborn child should not experience pain and suffering as he or she lives through to his or her natural death.
PPC follows a different model for pregnancy care that appreciates the intense amount of grief that occurs in this type of pregnancy and supports parents in a nonjudgmental way, fully supporting their autonomy.
To find out that an unborn child will die before birth or soon thereafter is devastating news for a family and distressing to the healthcare team. Though their short life might be veiled in heartbreak, even the life of the most disabled infant is significant. Perinatal palliative care provides a solution to an unexpected prenatal diagnosis that affirms life and allows parents to experience a natural grieving process. In the opening narrative, PPC would have given Mr. and Mrs. James, whose fictional story is nonetheless representative of many real life scenarios, a life-affirming alternative.
To some, it may seem a foolish endeavor to spend energy and resources on caring for severely disabled babies who may not even live until birth. However, we are called to provide special care and attention to the most vulnerable members of society. As Christians, we do not have the option of turning a blind eye to the hurting and helpless around us. Throughout Scripture, it is clear that God attributes special value to those who are weak and helpless. In fact, Christ himself stated that “as you did to the one of the least of these … you did it to me” (Matthew 25:40 ESV), and that “whoever receives one such child in my name receives me, and whoever receives me, receives not me but him who sent me” (Mark 9:37 ESV). How amazing that by lavishing love and care on the weakest of human beings, we are privileged to welcome the God of the Universe himself! Severely disabled babies may not be given much value in our society, but their lives are of infinite importance to God.
Cutting an already short life even shorter through pregnancy termination may rob us of many important lessons. By caring for someone vulnerable who can never repay us back, we may better learn how to respond to our own weakness and vulnerability, and through tragic circumstances, we may discover a new capacity for love and caring in our communities. As Scripture clearly teaches, “God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong” (1 Cor 1:27, ESV). When we open our hearts, churches, and clinics to walk the tough road of loving and supporting babies and their parents following an adverse prenatal diagnosis, we can experience a beautiful picture of how much God loves us in spite of our own brokenness.
 Joan Ramer-Chartsek and Megan V. Thygeson, “A Perinatal Hospice for an Unborn Child with Life-Limiting Condition,” International Journal of Palliative Nursing 11, no. 6 (2005): 274.
 M. J. Korenromp et al., “Long-Term Psychological Consequences of Pregnancy Termination for Fetal Abnormality: A Cross Sectional Study,” Prenatal Diagnosis 25, (2005): 194.
 Anette Kersting et al., “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,” Archives of Women’s Mental Health 12, no. 4 (2009): 198–199.
 Nathan J. Hoeldtke and Byron C. Calhoun, “Perinatal Hospice,” American Journal of Obstetrics and Gynecology 185, no. 3 (2001): 524.
 Nina Asplin, Hans Wessel, Lena Marions, and Susanne Georgsson Öhman, “Pregnant Women’s Experiences, Needs, and Preferences Regarding Information About Malformations Detected by Ultrasound Scan,” Sexual and Reproductive Healthcare: Official Journal of the Swedish Association of Midwives 3, no. 2 (2012): 75.
 Fernando Guerro, Antônio Ramos, Véronique Mirlesse, and Ana Elisa Rodrigues Baião, “Breaking Bad News During Prenatal Care: A Challenge to be Tackled,” Ciência & Saúde Coletiva
16, no. 5 (May 2011): 2363.
 Kevin McGovern, “Continuing the Pregnancy When the Unborn Child has a Life-Limiting Condition,” Chisholm Health Ethics Bulletin 17, no. 3 (2012): 7.
 Anita Catlin and Bryan Carter, “Creation of a Neonatal End-of-Life Palliative Care Protocol,” Journal of Perinatology 22, (2002): 190.
 World Health Organization, “WHO Definition of Palliative Care,” http://www.who.int/cancer/palliative/definition/en/ (accessed May 12, 2016).
 Catlin and Carter, “Creation of a Neonatal End-of-Life Palliative Care Protocol,” 184.
 National Association of Neonatal Nurses, “Position Statement #3063: Palliative Care and End-of-Life for Newborns and Infants,” February 2015, http://nann.org/uploads/About/PositionPDFS/1.4.5_Palliative%20and%20End%20of%20Life%20Care%20for%20Newborns%20and%20Infants.pdf (accessed July 22, 2016).
 Brian S. Carter and Jatinder Bhatia, “Comfort/ Palliative Care Guidelines for Neonatal Practice: Development and Implementation in an Academic Medical Center,” Journal of Perinatology 21, no. 5 (2001): 281.
 Douglas S. Diekema and Jeffrey R. Botkin, “Clinical Report—Forgoing Medically Provided Nutrition and Hydration in Children,” Pediatrics 124, no. 2 (2009): 816.
 Roger Collier, “Providing Hospice in the Womb,” Canadian Medical Association Journal 183, no. 5 (2011): E268.
 Amy Kuebelbeck, “Perinatal Hospice: A Holistic Approach for When Death Comes at the Beginning of Life,” The Form Newsletter—The Association for Death Education and Counseling (Jan-Mar 2005): 6.
 Byron. C. Calhoun, James S. Reitman, and Nathan J. Hoeldtke, “Perinatal Hospice: A Response to Partial Birth Abortion for Infants with Congenital Defects,” Issues in Law and Medicine 13, no. 2 (1997): 132.
 Martine De Lisle-Porter and Ann Marie Podruchny, “The Dying Neonate: Family Centered End-of-Life Care,” Neonatal Network 28, no. 2 (2009): 80.
 National Association of Neonatal Nurses, “Position Statement #3051: Palliative Care for Newborns and Infants,” September 2010.
 Dorothy J. Wholihan and James C. Pace, “Community Discussions: A Vision for Cutting the Costs of End-of-Life Care,” Nursing Economics 30, no. 3 (2012): 175.
 Heather L. Tubbs-Cooley et al., “Pediatric Nurses’ Individual and Group Assessments of Palliative, End-of-Life, and Bereavement Care,” Journal of Palliative Medicine 14, no. 5 (2011): 635.
 Beezy Marsh and Stephen Adams, “NHS to Harvest Babies’ Organs,” Daily Mail, last modified March 10, 2016, http://www.dailymail.co.uk/news/article-3478477/NHS-harvest-babiesorgans-Bombshell-new-proposal-mums-pregnant-damaged-babies.html (accessed May 12, 2016).
 I. Chatziioannidis, P. Chouchou, and N. Nikolaidis, “Is Brain Death Diagnosis in Newborns Feasible?” Hippokratia 16, no. 4 (2012): 309.
 Catlin and Carter, “Creation of a Neonatal End-of-Life Palliative Care Protocol,” 186.
 Ibid., 186.
 Ibid., 187.
 McGovern, “Continuing,” 8.
Stephanie Richardson, "Perinatal Palliative Care,” Dignitas 23, no. 2 (2016): 1, 4–8.