28 Prenatal and Neonatal Palliative Care
Christy Cummings, Anne Sullivan, Lauren Cramer, and Renee Boss
Having the baby was a surreal experience; it was entering a world of unknowns and uncertainties. Would he be born alive? Would he live for minutes, hours, days or months?
a mother
Introduction
For most, pregnancy is a time filled with joyful anticipation of welcoming a new life into the family. Technological advances provide early confirmation of pregnancy, thus allowing parents to share their news with others, often just weeks after conception. Technology also permits clinicians to detect life-threatening fetal complications and potentially even intervene via fetal surgeries or genetic therapies.1 Each year in the United States, more than 1 million pregnancies will end in fetal death, many due to genetic abnormalities. More than 23,000 babies between 20 and 40 weeks gestation will be stillborn, and nearly 16,000 neonates will die within the first 28 days of life, with nearly half of these deaths due to congenital diseases and/or prematurity.2 Gestational risk factors such as a family history of genetic diseases or maternal chronic illness can result in repeated losses. Concurrently, there are increasing numbers of infants born who survive with medical complexity. Factors that may impact survivorship include the advancement of medical technology, specific institutional practices of hospitals, and range of accessibility to outpatient and home-based supports to care for these medically fragile children.
Families may learn that their baby has a life-threatening diagnosis early in pregnancy, in the prenatal period just prior to delivery, or in the neonatal period after birth. As parents learn of a life-threatening fetal condition, they bear the difficult task of shifting from joyful welcoming of a healthy newborn to comprehending the ramifications of their baby’s diagnosis. Palliative care in each scenario is targeted to families’ unique needs after diagnosis, when families begin to grieve the loss of a “normal” pregnancy or infant.3 Fetal-neonatal conditions which would benefit from the interventions and support of palliative care can include rare syndromes such as anencephaly and Potter’s syndrome, all extremely premature infants, infants with severe birth injuries, and complex neonatal conditions when no diagnosis can be identified. We describe how interdisciplinary team (IDT) clinicians can deliver integrated, compassionate, and evidence-based services for these infants and families.
In this chapter, we discuss prenatal-neonatal palliative and end-of-life care. Often the phrase “perinatal” is used to describe care around the time of birth; we will use “prenatal” and “neonatal” to be more precise. We will highlight the unique contributions of IDT clinicians as related to four distinct periods as demonstrated in Figure 28.1.
Figure 28.1 Periods of prenatal and neonatal palliative care.
• Early Prenatal Period: The life-threatening fetal diagnosis is made weeks to months before birth
• Late Prenatal Period: The life-threatening fetal diagnosis is made hours to days before birth
A general overview of concepts and issues common to all periods will be presented first, followed by more specific information pertinent to each of the four periods. In this chapter, we conclude with information specific to end-of-life care and bereavement. Whenever available, data from relevant clinical research across disciplines are referenced. Because of the ethical and logistical limitations to research with pregnant women, women in labor, and parents of critically ill newborns, data are sometimes limited or absent. Where data are lacking, our recommendations are drawn from historical and current texts and from the clinical experience of interdisciplinary experts.
Epidemiology of Life-Threatening Neonatal Conditions
The landscape for decision-making for infants with potentially life-limiting conditions continues to evolve as advances in therapies and new outcomes data are published. For example, for infants born extremely preterm, near the limit of viability, defined broadly as birth between 20 and 25 weeks’ gestation, there remains substantial infant morbidity and mortality, with wide variation among hospitals and continuously evolving outcomes.4,5,6 Some centers do not offer resuscitation at less than 24 weeks’ gestation while others offer active resuscitation and antenatal corticosteroids to all infants as early as 22 weeks with survival rates at 22–23 weeks gestation of 25–50% across the United States.6,7 Decisions surrounding antenatal interventions and postnatal resuscitation for these infants should be made in conjunction with the family using a shared decision-making approach.
Similarly, for infants diagnosed with Trisomy 13 or 18, there remains high neonatal and infant mortality, and surviving children may have significant impairments. After such a diagnosis, many parents choose termination of pregnancy or to focus on the comfort of their child at birth, though many others wish for treatment to attempt to prolong the lives of their children. However, in the past decade, studies have revealed these conditions are heterogeneous, with increasing numbers of centers providing life-prolonging interventions for these children with survival reported as high as 15 and 16 years for Trisomy 13 and 18, respectively, after receiving interventions for congenital heart disease.8,9
Given the wide range of possible outcomes for some infants, it is important to elicit families’ understanding, hopes, and worries and determine what’s most important to them, as well as support them along with the rest of the IDT in delineating an approach to their child’s care.10 Parental preferences often fall into one of three categories: support the child in living as long as possible (leave no stone unturned in pursuit of possible life-sustaining interventions, may impact quality of life), support the child in living as well and as long as possible (most common—blended approach), or support the child in living as well as possible (prioritizing quality of life, even if for moments, hours, or days). A shared decision-making approach regarding options for termination/continuation of the pregnancy, interventions to prolong life, and choices about potential procedures should be practiced.10
Interdisciplinary Team Clinicians and Roles
The diagnosis and management of a life-threatening condition for an infant can potentially span the prenatal and neonatal periods and beyond and may require the involvement of unique IDT clinicians not found in other areas of pediatric palliative care (PPC) as shown in Figure 28.2. Palliative care in these scenarios may be delivered by palliative care specialists who work alongside the infant’s primary team or by clinicians without subspecialty palliative care training who care for children with serious illness, referred to as primary, or generalist palliative care.11 Not uncommonly, IDT clinicians work in different clinics, hospitals, or even cities due to the nature of regionalized neonatal care. For example, a life-threatening fetal diagnosis may be made by a community obstetrician, with subsequent management of both the pregnant woman and baby by multiple subspecialists at a large referral center. Particular effort must be made to communicate well and provide seamless care to families throughout this trajectory of care.
Figure 28.2 Potential interdisciplinary team members.
Supporting Families’ Practical Needs
Women with a high-risk pregnancy are often hospitalized for a prolonged period before birth. The pregnant woman’s hospitalization can profoundly disrupt the life of the family, and these women often worry about this burden on their loved ones.12 Distance from home to the regional hospital may be 100 miles or more, with the associated costs of traveling including lodging, meals, and parking. Families with a limited income may be forced to restrict visits or visit in the evening after completing a full workday, which can impact communication with daytime clinicians.
Environments that are conducive to and promote family presence are essential. Privacy and lenient visitation hours are important to women hospitalized prenatally.12 When private rooms are not available, strategies are needed to maintain confidentiality during parent–clinician discussions. Parents are very cognizant of and appreciative for those clinicians who “go out of their way” to enable family members to be present with them at their time of distress.13,14,15
Parents may need to balance multiple demands to be physically present at the hospital, care for other children, and work to provide for the family. Grandparents may not know how to support their children through something that they themselves have never experienced. Staff can help families with simple gestures like obtaining a food tray for the visiting father or informing the family about hospital specific and locally based resources to ensure that families’ most basic needs are being addressed. There has been a focused effort in many neonatal intensive care unit (NICU) settings to introduce technology that complies with the Health Insurance Portability and Accountability Act (HIPAA) to keep parents informed about the status of the child when they are not able to be immediately at the bedside. This has been implemented in the form of cameras focused on the infant, videoconferencing, and videophone, all with positive results and reduced anxiety and stress among parents.16 Such technologies also allow other family members, such as elderly grandparents and young siblings who would not otherwise be able to visit the NICU, to see the infant, and this has been reported as valuable.16
Siblings may be aware of a baby’s expected arrival before a potential life-threatening fetal diagnosis is made. Siblings have their own unique feelings of anticipation, excitement, sadness, or ambivalence. IDT clinicians may need to provide families with strategies to allow siblings to maintain closeness with their mother during her hospitalization while maintaining as normal a home and school routine as possible. Parents may need suggestions about how to include their children in the events surrounding the baby’s birth, life, and possible death.17 Child life specialists can offer creative avenues of art, play, and interactive therapies to assist these children in coping with their sibling’s medical complexity and uncertainty about outcome as well as how to say good-bye to their baby brother or sister in the case of the death of that sibling.
Communication
When families learn of a life-threatening fetal or neonatal condition, clinicians may feel an urgency to communicate essential information quickly, without careful attention to the way it is presented. Whenever possible, clinicians should anticipate the impact of information on a family already under significant stress. Priority should be placed on asking parents who else should be present for discussions regarding treatment decisions. Meeting times should not be restricted to routine morning or evening rounds and should allow for extended family presence. Family members often assist the parent to recall information given during these meetings. If a discussion must occur with the mother or father alone, a nurse or other clinician should be assigned the role of helping the parent to interpret the information. Sequential discussions are often needed. Parents should be encouraged to write down information and questions and should be provided with a means to do so.
The importance of clear, honest, and compassionate communication is central to prenatal and neonatal palliative care.18,19,20,21 Clinicians can convey empathy through careful listening and anticipation of the family’s needs. Respect is apparent when clinicians refer to the baby by his or her given name, if known. Respect extends to colleagues when conflicting opinions, which often arise in prenatal and neonatal decision-making, are approached in a professional manner. A family’s confidence and trust in the healthcare team are eroded if they witness disrespectful behavior among members of the team. An example of disrespectful behavior is when clinicians are openly critical of the competency of their colleagues because of a disagreement with a medical diagnosis and/or a management decision. These conversations should never occur in the family’s presence or in close proximity to family members where the conversations could be overheard. A family needs to know that clinicians work collaboratively as a team and with the family to identify a plan of care.
Decision-Making
Families who receive a diagnosis of a potentially lethal fetal or neonatal condition face decisions that are unparalleled in other areas of pediatrics and range from pregnancy termination to fetal surgery, including experimental fetal therapies such as in utero gene therapy and stem cell transplantation.1 The level of uncertainty is also unparalleled, as decisions are often necessary before birth when diagnosis and prognosis are rarely definite. This can create emotional distress and moral dilemmas for clinicians and parents alike as they consider management options.22
Internationally, there is significant variation in the process of decision-making for these infants. In countries with paternalistic models of medical care, physicians decide which infants will receive life-sustaining therapies, without family input.23 In the United States, parent–clinician collaboration in shared decision-making has become increasingly important.24 Neonatologists acknowledge that, at times, parental authority in decision-making may even surpass the authority of the medical team.25,26,27,28 For instance, a neonatologist may not feel comfortable limiting delivery room resuscitation for an infant born at 22 weeks’ gestation if the family requests that “everything be done,” even when the likelihood of survival is low.
Best practices for engaging in shared decision-making before, during, and after birth are not clear. Ideally, multiple interdisciplinary discussions would occur with families over time while minimizing the stressors of maternal illness, pain, and home-life disruption. But this rarely occurs. While data about these interactions are limited, retrospective data suggest that parent–clinician collaboration in these scenarios is incomplete. For example, Zupancic et al. interviewed parents and neonatologists within 24 hours of counseling; there was only 59% agreement that a management plan had been formulated.29
Parents and clinicians may come to these conversations with very different priorities. Neonatologists often emphasize predictions of morbidities and mortality30,31,32 based on large population aggregate data, yet families often focus on emotions, hope, and religious and spiritual beliefs, with their specific child in mind (e.g., “n of 1 mindset”).24,33,34,35 Families who have become pregnant through assisted reproduction or who have suffered repeated losses may be particularly committed to continuing a pregnancy, regardless of predictions of illness or death.36 Families may also possess unrealistic expectations for their infant based on media portrayal of “miracle babies.”
As with older children, parents have the right to act as surrogate decision-makers for their infants. But surrogate decision-making for infants is unique in several ways. The concept of “prior preferences” does not apply to newborns. Parents and clinicians may differ significantly in their perceptions of a “good” quality of life for infants; in one study, parents were more likely than clinicians to believe that attempts should be made to save all infants, regardless of projected outcomes.37 New parents already expecting to bring home a totally dependent infant may underestimate the consequences of decisions which may extend this dependence indefinitely.
Shared decision-making requires IDT clinicians to assist families in expressing their values and goals while focusing on the infant’s best interest and minimizing harm. Families should be asked about what the pregnancy or the infant means to them, and what they believe is a good quality of life. They should be encouraged to talk with important extended family members and religious leaders. They should be asked about their preferred decision-making role and reminded that the IDT is there to support them regardless of the decision.24
Families must be cautioned that, once a decision is made, diagnostic and prognostic uncertainty may translate into unexpected outcomes. The family who makes a carefully detailed birth plan involving out-of-state family members and religious rituals may suffer a fetal death before birth. Families who opt for nonresuscitation of an extremely premature infant to prevent infant suffering may deliver a vigorous baby weighing 200 grams more than predicted. Clinicians and families alike should prepare for the possibility that management decisions may need to be altered quickly based on new information.4,38,39 Finally, it should be noted that not all management options are equally available to families. Hospital policies and state policies can impact clinician willingness to offer the options of pregnancy termination, noninitiation of resuscitation, and withdrawal of therapy.40 Availability of resources in the hospital or community setting may also limit options, such as home hospice and visiting nurse or IDT clinician support.
Hope
Redefining hope is critical during prenatal and neonatal palliative care. Families are often unprepared for the diagnosis of a potentially lethal fetal or neonatal condition. Physicians may worry that talking about hope will create unrealistic expectations, yet parents who have gone through this have emphasized that, regardless of the infant’s prognosis, parents need clinicians to give them hope for something.33,34,41 One study found that physicians who provided more hope to families were not necessarily more likely to predict survival, but they did express emotion and showed parents that they were touched by the tragedy of the situation.33 Adult patients with a terminal diagnosis describe that clinicians can provide hope by shifting the focus to what can be realistically achieved versus what can only be wished for but never achieved.42 For the IDT that is counseling a family, this might mean openly acknowledging the grief and pain of the situation, reassuring the family that the team will join in their hope that the infant’s outcome will be a good one, and helping them to imagine how they might want events to proceed if the outcome is death or severe disability.
It is helpful to talk with families about what is meaningful to them, such as the possibility of holding a baby who is alive or without any medical equipment or technology for the first time or making sure that the infant does not experience pain. Hope for a “good outcome” may need to be redefined repeatedly over time, in a way that helps families to cherish what is possible with their infant. For parents expecting multiple babies, parental hope for each of the developing fetuses in utero may hang in a delicate balance, especially if one is diagnosed with a life-threatening condition. When the death of a multiple occurs, parents must simultaneously maintain hope for the surviving babies while experiencing grief for their loss.43
Cultural, Religious, and Spiritual Issues
Families often struggle to make meaning of a child’s death in the context of their cultural, religious, spiritual, or existential beliefs. This struggle may inform the decisions families make regarding their infant. Kenner and Boykova44 provide an excellent reference for neonatal end-of-life care issues as related to variety of religious traditions. Several unique aspects of religion and prenatal/neonatal end-of-life care should be noted. In some traditions, a fetus is not recognized as a person until it is born alive. Parents from these traditions who experience a miscarriage or stillbirth may feel abandoned by their communities and may need additional resources from the IDT. In other traditions, families may struggle to reconcile pregnancy termination or withdrawal of life-supporting technology with church doctrine. Talking with their own religious leader and/or a hospital chaplain can be invaluable, both by alleviating family guilt and by helping the medical team to better understand the parents’ values. While religious leaders can provide invaluable support for families, the medical team should be sure such leaders are aware of the medical possibilities to guide the family appropriately. Obstetrical and neonatal wards often limit visitors; when possible, accommodations need to be made for families’ cultural or religious end-of-life rituals. One advantage of home hospice for infants is the opportunity for families to participate in religious and cultural rituals more freely.
Studies of adults who face end-of-life decisions for themselves or their family members suggest that race and ethnicity impact choices about life-sustaining therapies. While this issue has not yet been evaluated for prenatal-neonatal end-of-life care, IDT clinicians should be prepared to assess the role that race, or ethnicity may play in parents’ decisions.
Professional Caregiver Suffering and Moral Distress
As in other areas of PPC, being with families throughout their baby’s dying can be deeply rewarding but can also lead to professional caregiver suffering. Suffering is intensified in situations involving moral distress, which often characterizes the uncertainty of prenatal and neonatal prognosis.45 Tragic infant deaths and cumulative losses can make it difficult for a clinician to create meaning in their profession. Clinicians who themselves are childbearing or childrearing may closely identify with families, particularly when clinicians have a long-term relationship with the family. Though such sensitivity can promote empathy, it can also lead to intense feelings of anxiety and grief in the clinician, who then may benefit from personal therapeutic supports to cope and process these experiences. A dual-process model of clinician’s grief has been described: clinicians may simultaneously experience grief reactions by focusing on the loss and avoid grief reactions by focusing on other aspects of a patient’s care.46
Infant deaths often occur in environments that do not support clinicians’ needs. Prenatal deaths may occur in birth centers, where care is focused on healthy births, often evidenced by names such as the “New Life Center.” Clinicians in birth centers may struggle to care for bereaved families while simultaneously caring for parents who are birthing healthy infants.47 Neonatal deaths often occur in ICUs which rarely emphasize the sacredness of the end-of-life experience. Though clinicians may join in annual rituals to honor deceased patients and process their own grief, support during acute losses may not be available.
IDT clinicians from varying disciplines have unique experiences with families at the end of life. For example, while neonatal nurses rarely feel involved in decision-making, neonatal physicians feel very responsible for end-of-life decision-making.48 These differences may make it difficult for clinicians to fully support each other. IDT clinicians with expertise in addressing suffering, such as palliative care team members, chaplaincy, or specially trained nurses,49 could facilitate self-care for others.
Strategies for minimizing professional caregiver suffering must also take place at the organizational level. An educational intervention in end-of-life care, which included content on prevention of compassion fatigue, has been shown to increase the comfort of neonatal nurses with the care of the dying infant.50 Other strategies might include a core group of clinicians to serve as a resource on all shifts, case reviews of each death for all disciplines, engaging mental health liaisons for debriefing, and providing meaningful gestures to clinicians, such as meditation or massages. Co-creation of ritual may provide clinicians with unique opportunities to both support bereaved families and facilitate their own grief work, as demonstrated in Figure 28.3.46
Figure 28.3 Interdisciplinary team (IDT) clinicians join parents in a ritual of thanksgiving and blessing for baby Logan before his death.
Photograph provided courtesy of Todd Hochberg.
The Four Periods of Prenatal and Neonatal Palliative Care
Early Prenatal Palliative Care
Clinical Vignette
Early Prenatal Palliative Care
Mr. and Mrs. Chang are expecting their fourth baby, with prenatal care from a community obstetrician who speaks the family’s primary language, Korean. A routine ultrasound at 18 weeks gestation reveals the baby has probable cardiac, renal, and neural tube defects. The obstetrician recommends further testing at an urban medical center 60 miles away.
Hesitantly, the Changs travel to the medical center, where further testing reveals a diagnosis of Trisomy 18 and multiple anomalies. Without an interpreter, the medical center team shares the diagnosis, offering Mrs. Chang the option to terminate her pregnancy. Upon hearing this news, Mr. and Mrs. Chang decline discussing other options for their baby’s care and return home. No further communication occurs between the medical center staff, the community obstetrician, or the family.
At 37 weeks’ gestation, Mrs. Chang presents at the local community hospital in active labor. As she is admitted to labor and delivery, her 12-year-old daughter translates, telling the nurse, “My mother is very scared because my father is at work right now and they think the baby may be sick.”
Before a thorough history can be obtained, the baby is born. He requires immediate intubation, chest compressions, umbilical line placement, and medications. Within 30 minutes of birth, the baby is stabilized, and transport is arranged for the baby to a Level 3 NICU at a regional medical center. Mrs. Chang briefly views her son prior to signing consents for the transfer of his care. Mr. Chang arrives at the community hospital just minutes after the ambulance’s departure with his son.
Upon arrival at the NICU, the neonatologist suspects a chromosomal disorder and orders genetic testing. Intensive intervention is provided to sustain the baby until a diagnosis can be confirmed. With aid of an interpreter, the baby’s current condition and suspected diagnosis is shared with Mr. and Mrs. Chang over the phone. Mr. Chang tells the staff to “do everything” for their baby.
Twelve hours later, Baby Chang’s condition deteriorates. He does not respond to resuscitative efforts and dies. His parents receive a phone call in Mrs. Chang’s postpartum room, notifying them of their son’s death.
The delivery of palliative care in the early prenatal period presents the unique challenge of planning for a patient who is not yet born. As a life-threatening condition is identified in-utero, both parents and clinicians must integrate their care goals in preparation for the uncertainty surrounding the baby’s prognosis after birth. The provision of palliative care subsequently unfolds during three distinct phases: in the prenatal period, during labor and delivery, and eventually throughout the baby’s living and dying.
Setting
As illustrated in the clinical vignette, early prenatal period advanced care planning may initially begin in the obstetrician’s office. Further evaluation may involve specialist consultations at a regional hospital far from the family’s home. In some instances, diagnosis of a specific prenatal condition, such as twin-to-twin transfusion or monoamniotic twins, may require the parents to travel out of state for specialized prenatal care. The emergence of hospital-based fetal care programs affords each IDT clinician the opportunity to integrate palliative care throughout the trajectory of care.51 Some families may opt for home birth, with care provided by a hospice and midwife team.
Interdisciplinary Team Clinicians
Parents who receive a life-threatening fetal diagnosis may interact with numerous IDT clinicians at multiple sites of care. In fact, each discipline represented in Figure 28.2 could potentially interact with the family throughout pregnancy, delivery, and the baby’s birth and potential death. Therefore, it is of utmost importance that a key point person be identified who can facilitate continuity throughout the trajectory of care.
Communication
In addition to the principles of communication discussed in this chapter’s introduction, there are particular considerations during the early prenatal period. IDT clinicians should establish and maintain a relationship with the family as the pregnancy continues, supporting the family and facilitating bonding with the baby. Clinicians can help parents anticipate questions from acquaintances, such as work colleagues or neighbors, about the pregnancy. It may be helpful to schedule prenatal visits before or after regular office hours. Some sites may offer separate childbirth education sessions separate from classes for families expecting healthy babies.52
Throughout the early prenatal period, clinicians may find themselves reviewing test results and other prognostic information with parents on multiple occasions. Patience and empathetic listening skills are important. Clinicians should explore with parents how best to provide updates on the baby’s status before, during, and after birth. Parents may worry about how their baby will tolerate labor. Clear expectations should be established about the management plan should fetal distress during labor occur. When the plan is for non-initiation of delivery room resuscitation, good communication between the obstetrical, neonatal, and pediatric teams can help to make this experience the least obtrusive as possible for families, so that they can cherish the time that they have with their infant. As shown in Box 28.1, an end-of-life care order set protocol can be a helpful communication tool and should specify orders for vital signs, medications, fluids and/or nutrition, and who should be called to declare death and complete postmortem documentation. Staff training and preparation is important, as obstetrical and newborn nursery staff who typically care for healthy infants may be unfamiliar with and uncomfortable with neonatal end-of-life care.
Box 28.1 Sample End-of-Life Care Order Set for Neonate Following Delivery
1. Admission Diagnosis: _______________________________
2. Birth Weight ___________ kg
3. Do Not Resuscitate (Refer to DNR Order Form)
4. Admit to ___NICU ___Newborn Nursery for comfort care
6. No cardiorespiratory monitoring. Assess for breathing/heart beat prn, per patient status changes
9. Provide nonpharmacological measures prn for irritability or mild pain:
10. For moderate pain and/or dyspnea control: ____________ (e.g., morphine)
11. With cessation of breathing/heart rate, page ___________for death pronouncement.
12. Expiration paperwork to be initiated by _______________.
Creation of Birth Plan and Advance Directive
The use of a written birth plan and advance directive can facilitate communication during the early prenatal period.21,52,53,54,55 The co-creation of a birth plan between parents and clinicians provides a unique opportunity for parents to be actively involved in their baby’s care while also preparing the parents for a variety of possible outcomes. Clinicians can help prepare families by acknowledging and naming the uncertainty while still emphasizing the goals and values of the parents regardless of the outcome.
A well-crafted planning tool should effectively communicate parents’ wishes for care of the mother during labor and delivery and should be partnered with advance directives outlining appropriate interventions for the baby. Box 28.2 highlights possible components of a birth plan and advance directives. It is important to note that this tool is effective only if it is shared, discussed, and readily accessible to all IDT clinicians prior to the baby’s birth.
Box 28.2 Components of a Prenatal Palliative Birth Plan and Neonatal Advance Directive
Opening Statement
Summarizes parents’ overall goal for their baby
Example: We would like to honor our son’s life and prolong it if able while minimizing his suffering, and share as many meaningful moments with him as possible
Care of Mother and Baby During Labor and Delivery
• Timing, route and location of the baby’s delivery
• Management of mother’s pain during labor
• Extent of monitoring baby’s heart beat during labor
• If parents have strong desire to meet the baby alive, possible interventions for fetal distress
• Presence of family members or friends
• Faith traditions, prayers, or rituals to be initiated soon after baby’s birth
Initial Care Management of the Baby
• Extent of desired resuscitation measures or clear DNR/limitation of emergency treatment orders
• Drying baby thoroughly after birth and placing on warm, clean blankets
• Use of warmth to maximize comfort and minimize unwanted symptoms
• Use of suctioning and free flow oxygen
• Management of pain, dyspnea, seizures or other symptoms
Care for the Family Following Delivery
• Plan for communicating baby’s status to family and friends not at hospital
Ongoing Care Management for the Baby
• Comfort measures including warmth, mouth and lip care, kangaroo care, skin care
• Potential initiation of nutrition: breast/bottle feeding, formula via dropper, gavage feedings
• Use of suctioning and free flow oxygen
• Management of pain, dyspnea, seizures, or other symptoms
• Plan for extent of diagnostic testing, such as no x-rays, ultrasounds, blood draws
• Plan for if baby will stay in mother’s postpartum room, newborn nursery, or NICU
Discharge Plan for Infants Who Survive the Postpartum Period
• Anticipatory plan for baby’s care when mother is ready to be discharged from the hospital
• Care of the baby in the NICU, home palliative and/or hospice care, community hospice
End-of-Life Care Needs
(Some families may not want to address these issues prior to baby’s death)
• Family’s preferred funeral director
• Autopsy, postmortem biopsy, and/or special genetic testing
• Organ or tissue donation plans if appropriate
Contact Information
For the following as needed: Palliative care coordinator or primary IDT contact, consulting physicians, family’s clergy or pastor, photographer, local prenatal/PPC, or hospice program
Decision-Making
The process of decision-making in the early prenatal period begins at the time of diagnosis. As reflected in the clinical vignette, parents may be offered the option to terminate the pregnancy. Prior to discussing these options, the clinician should explore family values and considerations around termination as many families find this conversation distressing, and it has the potential to be perceived as disrespectful and devaluing their child.56,57 Clinicians presenting such options should be clear about any institutional policies related to terminations such as family counseling, ethical review, or committee approval. Terminations may not be permitted at a religiously affiliated hospital. Decisions about termination often reflect parents’ moral, ethical and religious views. Current data are limited regarding pregnancy outcome following a potentially life-limiting fetal diagnosis, with two programs reporting 60% of parents opting to terminate the pregnancy.51,58 Termination decisions may be complicated if the family has experienced infertility or with the diagnosis of a life-threatening condition with one fetus of a multiple pregnancy.
For those parents who choose to continue the pregnancy, subsequent decision-making is guided by the certainty of diagnosis, the certainty of prognosis, and the meaning of that prognosis to the parents.54 Together, IDT clinicians and parents work to determine those interventions which are of best interest for the baby, weighing treatment benefits and burdens. The American Academy of Pediatrics (AAP)39 and the Neonatal Resuscitation Program59 confirm that resuscitation may be forgone in any scenario if infant survival is unlikely. It is important to note that the number of conditions for which there are clear recommendations for nonresuscitation has decreased steadily over time as medicine and technology diminish the chance that a disease will be “lethal.”60 For example, for infants with Trisomy 13 or 18, previously referred to as “lethal” conditions due to the high mortality and severe disability among survivors, there has been a shift toward a shared decision-making approach to help better understand families’ values and goals in the context of current medical facts in order to weigh the benefits and burdens of any potential intervention for their child.61,62
Clinicians should be aware that death at very early gestational ages may present unique issues regarding hospital practices and disposition options. In most states, pregnancies ending prior to 20 weeks completed gestation do not require reporting or generation of a fetal death certificate. Therefore, parents experiencing an early pregnancy loss are not legally bound to make any disposition choice, and most states do not require clinicians to notify parents that they have a choice in the disposition of their tiny baby’s body. If and when a fetal death occurs, IDT clinicians should be mindful of hospital, local, and state ordinances and practices regarding options for disposition and communicate these to parents in an appropriate, considerate, and consistent manner.
For infants who survive birth, decision-making is an ongoing process guided by the infant’s status during critical transition points including the immediate postpartum period and the time around maternal hospital discharge. Together, IDT clinicians work to promote maximum comfort for the family and infant while accommodating evolving needs and preferences. If a mother requests hospital discharge soon after birth and prior to the baby’s death, staff may have little time to adequately provide information and address all of the parents’ needs. Routine follow-up after hospital discharge is essential as decision-making unfolds. Many families will choose to support the child in living as long as possible with support of medical technology; the IDT can provide support throughout this decision-making process through the post-discharge period.
Redefining Hope
Families in the early prenatal period face the daunting task of understanding their unborn child’s poor prognosis while simultaneously waiting to meet their baby face to face. IDT clinicians must always be mindful that some parents may maintain seemingly unrealistic hope that the diagnosis will be proven false upon the baby’s birth. Facilitating choices in care for both mother and child can nurture a sense of control, provide meaning, and foster hope for the family in the midst of chaos and heartbreak.63 Parental hopes may shift throughout the early prenatal period care trajectory, and IDT clinicians should be prepared to address these preferences accordingly.
Management of Infant Suffering
IDT clinicians should anticipate and prepare for potential symptoms of infant suffering after birth. Table 28.1 presents pharmacological and nonpharmacological options for pain and symptom management. Table 28.2 presents medication dosing appropriate for term newborns and infants.
Table 28.1 Strategies to minimize infant suffering
| Site of care | Pharmacologic | Nonpharmacologic |
| In the delivery room | Oral or rectal | Warmth Minimal stimulation Swaddling Kangaroo care Non-nutritive sucking |
| NICU care | IV bolus/IM** IV continuous infusion Oral or rectal Topical | Warmth Minimal stimulation Minimal painful procedures Swaddling Non-nutritive sucking Noise reduction Light reduction Nesting Kangaroo care Massage Music |
| Home care | Oral or rectal Topical | Warmth Swaddling Nutritive or Non-nutritive sucking Kangaroo care Massage Music |
Adapted with permission from IBM Micromedex Neofax. Available at http://neofax.micromedexsolutions.com
** minimize intramuscular (IM) dosing when able
Also see Chapter 21 “Prevention and Treatment of Pain in Children with Serious Illness.”
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