Prenatal and Neonatal Palliative Care

Published on 09/04/2015 by admin

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37 Prenatal and Neonatal Palliative Care

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. Each year in the United States, more than one million pregnancies will end in fetal death, many due to genetic abnormalities. More than 26,000 babies between 20 and 40 weeks’ gestation will be stillborn, and nearly 18,000 neonates will die within the first 28 days of life, with nearly half of these deaths due to congenital diseases and/or prematurity.1 Gestational risk factors such as a family history of genetic diseases or maternal chronic illness can result in repeated losses.

Families may learn that their baby has a life-threatening fetal 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 new life 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.2 Fetal-neonatal conditions that 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, and infants with severe birth injuries. We will describe how interdisciplinary 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 term 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 interdisciplinary team (IDT) clinicians, as related to four distinct periods (Fig. 37-1):

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.

IDT Clinicians and Roles

The diagnosis and management of a life-threatening condition for an infant can span the prenatal and neonatal periods, and may require the involvement of unique interdisciplinary team clinicians not found in other areas of pediatric palliative care (Fig. 37-2). 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 mother and baby by multiple subspecialists at a large referral center. Particular effort must be made to communicate well and to provide seamless care to families throughout this trajectory of care.

Supporting families’ practical needs

Mothers with a high-risk pregnancy are often hospitalized for a prolonged period before birth. The mother’s hospitalization can profoundly disrupt the life of the family, and mothers often worry about this burden on their loved ones.3 Distance from home to the regional hospital may be significant, with the associated costs of travelling and parking. Families with a limited income may be forced to visit during late hours when parking is free, which can affect communication with daytime care providers.

Environments that are conducive to and promote family presence are essential. Privacy and lenient visitation hours are important to women hospitalized prenatally.3 When private rooms are not available, strategies are needed to maintain confidentiality during parent-provider 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.4

Fathers, in particular, 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 tasks such as obtaining a food tray for the visiting father or informing the family about parking discounts, to ensure that families’ most basic needs are being addressed.

Siblings may be aware of a baby’s expected arrival before the life-threatening fetal diagnosis is made. Siblings have their own 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 of a home routine as possible. Parents may need suggestions about how to include their children in the events surrounding the baby’s birth and death.5 Child life specialists can offer creative avenues of art, play, and interactive therapies to assist these children as they meet and say good-bye to their baby brother or sister.

Communication

When families learn of a life-threatening fetal or neonatal condition, providers may feel an urgency to communicate essential information quickly, without careful attention to the way it is presented. Whenever possible, providers should anticipate the impact of the 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 to help the parent 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.69 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. 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 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 experimental fetal surgery. The level of uncertainty is also unparalleled, as decisions are often necessary before birth when diagnosis and prognosis are rarely definite. This can create moral dilemmas for providers and parents as they consider options.

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.10 In the United States, parent-provider collaboration in shared decision-making has become increasingly important. Neonatologists acknowledge that, at times, family autonomy in decision-making may even surpass the authority of the medical team.1113 For instance, a neonatologist may not feel comfortable limiting delivery room resuscitation for an infant born at image weeks’ gestation if the family requests that “everything be done,” even when the likelihood of survival is extremely 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 disruption of the family’s home life. But this rarely occurs. While data about these interactions are limited, retrospective data suggest that parent-provider collaboration in these scenarios is incomplete. A study interviewing the parents and neonatologists within 24 hours of counseling showed there was only 59% agreement that a management plan had been formulated.14

Parents and providers may come to these conversations with very different priorities. Neonatologists often emphasize predictions of morbidities and mortality,1517 yet families often focus on emotions, hope, and religious and spiritual beliefs.18,19 Those who became 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.20 Families may 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 providers may differ significantly in their perceptions of a “good” quality of life for infants; in one study, parents were more likely than providers to believe that attempts should be made to save all infants, regardless of projected outcomes.21 New parents already expecting to bring home a totally dependent infant may underestimate the consequences of decisions that 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 interests. 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.

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 non-resuscitation of an extremely premature infant to prevent infant suffering may deliver a vigorous baby weighing 200 g more than predicted. Providers and families alike should prepare for the possibility that management decisions may need to be altered quickly based on new information.2224

Finally, it should be noted that not all management options are equally available to families. Hospital and state policies can impact provider willingness to offer the options of pregnancy termination, non-initiation of resuscitation, and withdrawal of therapy.25,26

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 providers to give them hope for something.18,19,27 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.18 Adult patients with a terminal diagnosis said providers can provide hope by shifting the focus to what can be realistically achieved versus what can only be wished for.28 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 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 simultaneous maintain hope for the surviving babies while experiencing grief for their loss.29

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. A 2010 text30 provides an excellent reference for neonatal end-of-life care issues as related to a number of religious traditions. Several aspects of religion and prenatal and/or 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 neonatal care with religious 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. Obstetric and neonatal wards often limit visitors; 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 more freely participate in religious and cultural rituals.

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 and 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 pediatric palliative care, being with families throughout their baby’s dying can be deeply rewarding but can also lead to suffering by the professional caregiver. Suffering is intensified in situations involving moral distress, which often characterizes the uncertainty of prenatal and neonatal prognosis.31 Tragic infant deaths and cumulative losses can make it difficult for a clinician to create meaning in his or her 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 in the clinician, it can also cause death anxiety and grief. A dual-process model of clinician’s grief has been described: clinicians will simultaneously experience grief reactions by focusing on the loss and avoiding grief reactions by focusing on other aspects of a patient’s care.32,33

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.34 Neonatal deaths often occur in intensive care units, which rarely emphasize the sacredness of the end-of-life experience. Though clinicians may join in annual rituals to honor deceased patients and 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.35 These differences may make it difficult for providers to fully support each other. IDT clinicians, such as chaplains, with expertise in addressing suffering 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 who care for a dying infant.36 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 massages. Co-creation of ritual may provide clinicians with opportunities to both support bereaved families and facilitate their own grief work33 (Fig. 37-3).

The Four Periods of Prenatal and Neonatal Palliative Care

In this section, we discuss considerations for patients and families in each of four periods: early prenatal period, late prenatal period, early neonatal period, and late neonatal period. Case studies are followed by recommendations for specific interventions for each patient population.

Early prenatal palliative care

Mr. and Mrs. Chang are expecting their fourth baby, with prenatal care provided by 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 to discuss other options for their baby’s care, and return home. No further communication occurs among the medical center staff, the community obstetrician, or the family.

At 37 weeks’ gestation, Mrs. Chang presents at the community hospital in active labor. As she is admitted to the labor and delivery ward, 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 before 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. Aggressive 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 resuscitation, 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 (EPP) presents a unique challenge in planning for a patient who is not yet born. As a life-threatening condition is identified in utero, both parents and providers must transition care goals in preparation for a baby who may die shortly 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.

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 Fig. 37–2 could interact with the family throughout pregnancy, delivery, and the baby’s birth and death. Therefore, it is of utmost importance that a key point person be identified who can facilitate continuity throughout the trajectory of care. As one mother reported to the advanced practice nurse who filled such a role on the palliative care team: “You were our safe, familiar center in the middle of this frightening storm.”

Communication

In addition to the principles of communication discussed in this chapter’s introduction, there are particular considerations during the EPP.

IDT clinicians should establish and maintain a relationship with the family as the pregnancy continues, supporting the family and facilitating attachment to the baby. Clinicians can help parents anticipate questions from bystanders 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.38

Throughout the EPP, clinicians may find themselves reviewing test results and other prognostic information with parents on multiple occasions. Patience and compassionate 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 occur during labor. When the plan is for non-initiation of delivery room resuscitation, good communication among the obstetric, neonatal, and pediatric teams can help make this experience the least obtrusive as possible for families, so that they can cherish the time that they have with their infant. A palliative care order set or 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 post-mortem documentation (Box 37-1). Staff training and preparation is important, as obstetric and newborn nursery staff who typically care for healthy infants may be unfamiliar with and uncomfortable with neonatal end-of-life care.

Creation of a Birth Plan and Advance Directive

The use of a written birth plan and advance directive can facilitate communication during the EPP.3840 The co-creation of a birth plan between parents and clinicians provides an opportunity for parents to be actively involved in their baby’s care. As one mother eloquently stated, “this is a special kind of nesting I can do to prepare for my son.”

A well-crafted planning tool should effectively communicate the parents’ wishes for care of the mother during labor and delivery, and should be partnered with advance directives outlining appropriate medical and palliative interventions for the baby. Box 37-2 highlights possible components of a palliative care 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 before the baby’s birth.

BOX 37-2 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 living, minimize 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

End-of-Life Care Needs

Some families may not want to address these issues prior to baby’s death.

Contact Information

For the following as needed: Palliative care coordinator or primary IDT contact, consulting physicians, family’s clergy or pastor, photographer, local prenatal, pediatric palliative care, or hospice program.

Decision Making

The process of decision making in the EPP begins at diagnosis. As reflected in the case study, parents may be offered the option to terminate the pregnancy. Clinicians presenting such options should be clear about any institutional policies related to terminations, such as family counseling, ethical review, or committee approval. Decisions about termination often reflect parents’ moral, ethical and religious views. Data are limited regarding pregnancy outcome following a lethal fetal diagnosis, with two programs reporting 60 percent of parents opting to terminate the pregnancy.37,41 Termination decisions may be further 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.39 Together, IDT clinicians and parents work to determine those interventions that are of best interest for the baby, weighing treatment benefits and burdens. There are several congenital conditions for which neonatal resuscitation at birth is not recommended, including anencephaly and trisomy 13. In addition, the American Academy of Pediatrics (AAP)23 and the Neonatal Resuscitation Program42 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 non-resuscitation has decreased steadily over time, as medicine and technology diminish the chance that a disease will be lethal.43

Providers should be aware that death at very early gestational age may present unique issues regarding hospital practices and disposition options. In most states, pregnancies ending before 20 weeks’ completed gestation do not require reporting or the 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 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 before 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.

Management of Infant Suffering

IDT clinicians should anticipate and prepare for potential symptoms of infant suffering after birth. Table 37-1 presents pharmacological and non-pharmacological options for pain and symptom management. Table 37-2 presents medication dosing appropriate for term newborns and infants.

TABLE 37-1 Strategies to Minimize Infant Suffering

Site of Care Pharmacologic Nonpharmacologic
In the delivery room

NICU care

Home care

Late prenatal palliative care

Palliative care in the late prenatal period (LPP) is focused on those families who face an acute delivery of an infant with a life-threatening condition. Examples include mothers with a previously uncomplicated pregnancy who suddenly develop extremely premature labor, or mothers who develop their own life-threatening condition, such as pre-eclampsia, so that delivery of the infant must occur emergently. Other families who may benefit from palliative care in the LPP are those who have known about a potential fetal complication for weeks but who have not developed close relationships with providers and have not made any decisions for their infant’s care.

Interdisciplinary Team Clinicians

The IDT varies depending on the presence of a palliative care team and the institutional practice of including neonatal clinicians in prenatal decision-making. Figure 37-2 highlights typical IDT clinicians in the LPP, which can include obstetricians, nurse midwives, labor room and/or triage nurses, antepartum nurses, neonatal physicians, nurse practitioners, social workers, and chaplains. If the mother was transported, a transport nurse may be the person to spend the most amount of time with the mother and may best get to know her and her family. IDTs that do not include neonatal clinicians in the LPP can lead to distress and frustration among obstetric and neonatal nurses.

Communication

Communication during the LPP is often rushed and easily fragmented. Multiple providers speak with the family about the mother’s and infant’s conditions. A maternal-fetal medicine specialist may be the first to meet a woman after she has been transferred to a regional medical center with imminent delivery. If involved, neonatologists or neonatal nurse practitioners typically provide prognostic information to the parents regarding infant survival and morbidity. Regardless of the discipline involved, the clinicians must be knowledgeable about local and national data for infant outcome. This is especially critical because treatment decisions made by physicians have been shown to be influenced by their knowledge of outcome and the type of information that is available.45

Data suggest that women may experience a profound sense of responsibility for preventing preterm birth.46 Providers should choose their words carefully to avoid enhancing mothers’ guilt. For example, phrases such as “hold on for two more weeks” should be avoided. Mothers may also fault themselves for somehow causing premature birth. Providing accurate information is critical to reassure mothers who did nothing to cause the events.

The benefits of a prenatal tour to the NICU during a high-risk pregnancy have been documented.47 However, the practice of giving a prenatal tour is not consistent and may be dependent on the institution’s philosophy of care regarding involvement of neonatal clinicians. For mothers restricted to bed rest, information about the NICU can be presented in a variety of innovative ways, including photo albums and/or digital recordings.

Parents who rely on other sources, such as the internet, to supplement healthcare information may feel hampered by limited availability or access to these external resources in the hospital setting. Families who do access the internet may develop unrealistic expectations for their infant’s outcome. Parents who access chat rooms with other parents can become frustrated with limited options offered at their site of care if they hear of other possible care practices. Providers must listen carefully to the families to understand their ongoing need for information and care options.

Decision Making

For diagnoses made in the LPP, termination is generally not an option. Instead, decisions include:

In reality, decisions for life-threatening fetal conditions diagnosed in the LPP are often rushed and chaotic, with inadequate time to explore parents’ authentic values and goals. This may partially explain why only 36% of neonatologists say that they would defer to parent wishes for infants born in the grey zone of 23 to 24 weeks’ gestation, where prognostic uncertainty is high.48

Despite an attempt to account for prognostic indicators beyond gestational age,49 the ability to give an accurate prognosis in the LPP is limited.22 Therefore, the AAP recommends that providers guide families through a process of deciding whether to initiate life-sustaining therapies in the delivery room.23,24 A clinician skilled in newborn care should be present at delivery to evaluate the infant. Ideally, this clinician will have been a part of the management plan. The World Health Organization’s definition of “live born” should be used to document infant condition at birth.50 Parents will notice any signs of life in the infant at birth, and may need help to understand that a weak cry or reflexive movement do not change the infant’s prognosis. If the infant’s condition is the same as what was anticipated, then the plan of care can be followed. If the infant’s condition is different than anticipated or the parent requests, then treatment decisions may change from the earlier plan.

Because decision making in the LPP is often rushed and many families are unprepared for the possibility that their infant could die, recent recommendations have called for the introduction of “antenatal advanced directives.”51,52 With these recommendations, all expectant parents would receive information about extreme prematurity and be advised to consider the management options. While such directives might assist parents to be informed, it is unknown how the directives would impact the actual decisions at the time of birth.

Redefining Hope

There may not be an opportunity for hope to be redefined by parents in the LPP because of the short time between diagnosis and birth. Clinicians may feel reluctant to even begin a preliminary discussion about hope with parents because of the high probability of infant death.27,53 Clinicians can mistakenly equate hope with intact survival of an infant. In an attempt to avoid giving false hope, clinicians overemphasize poor prognostic data to try to convince parents of the gravity of the condition. Discussions about hope are most easily started by asking families what they value, and reframing hope within those parameters, such as hoping that the baby can live until a grandmother arrives.

Early neonatal palliative care

Ms. Jones is 20 years old and pregnant for the first time. She is no longer involved with the baby’s father, and plans to raise the infant alone. She has an uneventful pregnancy, and goes into labor on her due date. During labor at a local hospital, fetal bradycardia occurs. A stat cesarean section reveals total placental abruption. The infant is pale, limp, and apneic at birth. A neonatal nurse practitioner begins resuscitation, and first detects the infant’s heart rate at 12 minutes of life. He is brought to the special care nursery and placed on a ventilator. He is profoundly acidotic, and within 1 hour he has a seizure. He is transferred by helicopter at 3 hours of life to a regional NICU 100 miles away.

The infant is encephalopathic and hypotensive. An EEG is consistent with hypoxic ischemic encephalopathy and seizures. Ms. Jones is recovering from her surgery at the community hospital, and the NICU team speaks with her by telephone. They tell her the infant’s condition is very serious.

When Ms Jones arrives at the NICU on hospital day 2, the on-call resident reports that her son is “doing OK.” She tells Ms. Jones that the day team will meet with her in the morning. Ms. Jones asks the nurse for information, and the nurse states this is the first time she has cared for her son. She tells Ms. Jones that the baby has “had a good evening.”

The attending physician meets alone with Ms. Jones the next day. He discusses the infant’s diagnosis and his current treatments. Ms. Jones is told that should the infant survive, he is very likely to have profound disability. She is also told that, in scenarios like this, some parents do not want their baby to be supported by machines, and they decide to take the baby off the ventilator. “Ms. Jones, do you want us to take your son off the machines?”

Palliative care in the early neonatal period (ENP) targets those families who experience a normal pregnancy, but whose neonate develops a life-threatening condition during birth or in the first few hours of life. Common neonatal diagnoses in this period include birth traumas, overwhelming infections, and previously undiagnosed congenital conditions. These families are generally stunned by the abrupt onset of their infant’s condition. The primary surrogate decision maker, the mother, has just given birth. Palliative care is appropriate for all of these families from birth, even as acute care and diagnostic evaluation proceeds.

Setting

Care for critically ill infants in the ENP nearly always occurs in the NICU. Intensive care for newborns was regionalized in the 1970s in an attempt to maximize neonatal outcomes by designating hospitals with special technologies and expertise. Critically ill newborns born at community hospitals are often transferred to regional NICUs. When a neonatal life-threatening diagnosis is certain at birth, and the infant is likely to die during transport or soon after, providers should consider whether palliative care should be given by the local providers, in lieu of neonatal transport.

Providing palliative care in the NICU can be challenging. NICUs are fast-paced and loud, with many staff members. There is often little privacy for families, and restrictions on visits by siblings and extended family members. Successful models for NICU palliative care rooms have included drapes, a bed and a refrigerator for the family, music, disposable cameras, and video cameras for parent use.

For some newborns with life-threatening conditions in the ENP, hospital discharge may be possible. Inpatient hospice is rarely available for newborns, particularly in rural areas. Home hospice is available to some, though not all, families. In one study of 62 infants who died at home, only 20 received home hospice.54 Although little research has examined parent preferences for place of death for newborns, clinical experience suggests that important family-infant bonding can occur when newborns are allowed to go home. Families often treasure the memories of a newborn sleeping in her own crib, wearing her own clothes, and being held by family members. Bonding between extended family members and the newborn has been found to improve the support of parents by the extended family during the bereavement period.55

Interdisciplinary Team Clinicians

IDT clinicians in the ENP include many prenatal and neonatal providers involved in the LPP, as well as pediatric subspecialists, child life providers, and community neonatal providers including pediatricians and the home-hospice team. Fig. 37-2 highlights some of the common roles for these providers. As with other intensive care environments, many NICUs do not integrate palliative care early in medical management. In one study, the median time between NICU palliative care consult and infant death was 2.5 days.56 A palliative care IDT member who is fully integrated into the NICU team can increase opportunities for initiating palliative care earlier into neonatal care.

Communication

When diagnosis of a life-threatening neonatal condition is made in the ENP, provider coordination and communication must be established quickly. For infants who must be transferred, arrangements should be made for the mother to be transferred as well so that the family can be closer to the infant and communication can improve.

In the ENP, the first hours to days after birth are often filled with tests and subspecialist evaluations. Clear and timely communication among IDT clinicians and the family can be challenging. A central IDT member should be designated as the primary person to deliver information and recommendations to the family. The goal is to integrate information into a big picture and to form goals of care. Providers should avoid the temptation to tell families that their infant is “doing OK” or “having a good day” when the overall status is moribund. This provides families with false hope, and does not allow them time to prepare for the grave reality of their infant’s condition.

For infants who are discharged to home, communication between hospital and community providers can be facilitated by the involvement of home hospice. Where home hospice is not available, hospital providers must confirm that the community pediatrician is comfortable with caring for the dying infant, including managing seizures and pain, and can access resources for the family. When appropriate, documentation of resuscitation status should be completed as required by the state and provided to the family before discharge from the hospital.

Decision Making

There are several decisions particular to the ENP, which should be noted.

Because the neonatal diagnosis was not made prenatally, aggressive delivery room resuscitation is typical in these scenarios. In the first hours and days of life, as the prognosis becomes grim, decisions arise regarding whether additional therapies such as extracorporeal membranous oxygenation, should be withheld, or if current life-sustaining therapies, such as mechanical ventilation, should be withdrawn. The withholding of fluid and nutrition is particularly controversial in neonates. Some providers have concerns about withholding nutrition in light of the Baby Doe regulations.57 The 2009 report of the American Academy of Pediatrics Committee on Bioethics reaffirms that nutrition may be withheld from newborns and infants when their benefit to the infant is outweighed by the burden.58

These discussions must center on the parents’ values and goals and on the infant’s best interest. Although parents should be encouraged to share in decision-making, providers can ease guilt and regret by framing these discussions not in terms of “do you want us to stop the ventilator,” but instead focusing on what might be of greatest benefit to the infant in the short- and long-term.

When withdrawal of life-sustaining therapies occurs, providers should prepare families for what they will see, hear, and feel as their infant dies. Sensitive introduction of the concept of autopsy may be necessary before removing central lines or thoracostomy tubes in some hospitals; hospital regulations may require that medical devices remain in place. In the case of a suspected congenital syndrome, which could affect future pregnancies, genetic specialists should advise about neonatal testing needed before death. Many genetic tests can be performed on a post-mortem skin biopsy.

Families should be prepared that, while neonatal death typically occurs within hours of extubation, some infants survive for days. Gasping respirations often occur. The neonatal heart rate may persist for hours after breathing stops. Dying may be prolonged if the infant is not bundled closely and kept warm. IDT clinicians may hear parents questioning their decisions and the plan of care for the baby when the dying process seems to be prolonged, and they should be prepared to answer questions and provide support accordingly.

Management of Infant Suffering

Nearly all sick newborns in the ENP are exposed to painful intravenous access, phlebotomy, intubation and ventilation. Newborns are often agitated by concomitant exposure to cold, noise, and light. Assessing and managing neonatal pain is a skill that differs from pain assessment of older children.59 While the motor response to pain evolves and becomes more pronounced near term, perception of pain is present as early as 16 to 18 weeks’ gestation. Several scales have been developed to assess pain in infants.6064 Only a subset of these scales are appropriate for use with premature infants.6062 Facial grimacing is central to most of these scales; brow furrowing, nasolabial bulge, and squeezing the eyes shut also indicate pain. When facial movements are decreased by sedation, then heart rate variability can be a reliable indicator of pain.

There may be reluctance to treat sick newborns with medications that depress the central nervous system, because the neurologic exam is often a critical component of accurate diagnosis and prognosis. There may also be concern that the infant’s tenuous cardiorespiratory status will be irrevocably depressed before a clear diagnosis is made. Nevertheless, providers should strive to minimize pain and discomfort with pharmacologic and non-pharmacologic therapies as appropriate. Refer to Tables 37-1 and 37-2.

Late neonatal palliative care

Anna is born at 24 weeks’ gestation. She is very sick from birth with severe lung disease. On day 3, she is diagnosed with large, bilateral intraventricular hemorrhages. The family is told that Anna could die, and that if she survives she may have mental retardation or cerebral palsy. The family is religious, and asks the neonatologist to do everything possible for Anna. They pray for a miracle.

Over the coming weeks, Anna remains critically ill and mechanically ventilated. She has one surgery for a persistent ductus arteriosus, and another surgery to place a ventricular shunt. She develops repeated infections related to her immature immune system. She does not tolerate enteral feeding. The family visits infrequently; they live 90 miles away and have had to return to work. With each crisis, they are told that Anna may die. The parents remain hopeful. Privately, Anna’s father is becoming more anxious about his daughter’s condition and wonders what they should do.

At 10 weeks of age, Anna remains partially dependent on parenteral feeding, and multiple attempts at extubation have been unsuccessful. She develops seizures, which are poorly controlled; twice she has needed CPR during a seizure. She has bradycardia in response to routine care or being held by her parents.

Because it is an academic hospital, the clinical staff rotates frequently, and no one develops a rapport with the parents. The team worries that Anna is suffering, and several clinicians wonder about the option of withdrawing life-sustaining therapies. A consulting physician, who has not previously been involved in her care, tells the parents it would be wrong to stop treating Anna. The father has a hard time trusting the medical team, and argues with the mother about what should be done.

One night Anna has a prolonged seizure and goes into cardiac arrest; she dies before her parents arrive at the hospital.

Palliative care in the late neonatal period (LNP) targets families whose infant develops a life-threatening condition in the first weeks to months of life. Common neonatal diagnoses in this period are surgical complications, such as diaphragmatic hernia repair, profound neurologic diseases, and severe sequelae of prematurity, including cor pulmonale. These diseases often manifest as a roller coaster of improvements and decompensations; families endure multiple crises over time. Palliative care is appropriate throughout the disease trajectory.

Communication

Continuity of communication with families easily breaks down when infants are hospitalized for weeks to months. Families who live far away may only be able to visit infrequently. Parents may be forced to return to work soon after birth, so that maternity and paternity leave can be saved until the infant is discharged. Parent-infant bonding can be disrupted because of the infant’s prolonged illness, and parents may feel a loss of their role as parent. For mothers, postpartum depression can increase feelings of sadness and detachment. Regular meetings with the family throughout the hospitalization can assess their evolving needs.

Poor communication among IDT clinicians, resulting in a loss of focus on the goals of care, can occur. Multiple strategies are needed to improve communication. Regular IDT meetings, with minutes distributed to missing clinicians, are helpful. This is particularly true when multiple subspecialists have recommendations that must be placed in the context of the infant’s overall condition. Family satisfaction is improved when IDT clinicians deliver consistent information.19 In settings with regularly rotating clinicians, a non-rotating IDT member, such as a social worker, may best serve as the primary contact person for the family.

As noted earlier, hospital providers must ensure clear communication with community providers for infants who are discharged to home with or without home hospice. Explicit discussions about pain and symptom control, resuscitation status, and family resources are needed.

End of Life and Bereavement Care

Though caring for families during their child’s dying and throughout bereavement have been described by several other authors in this book, several issues unique to prenatal and neonatal loss should be recognized.

Memory making

For families whose infant dies around the time of birth, an entire lifetime of meeting, treasuring, and loving their babies may be wrapped up in mere minutes, hours, or days. Parents value the choice to interact and make memories with their baby during this brief time.6,8,66 Ritual to acknowledge the baby’s living and dying can provide meaning and nurture relationships among the parents, siblings and the baby.67,68 All IDT clinicians can play an integral role in facilitating such moments between parent and child.

Some families willingly accept opportunities to interact with their baby and make memories. Others may hesitate initially, but may appreciate time to consider the options. Opportunities for memory making and ritual are highlighted in Table 37-3. Families should be encouraged to interact with their baby at a pace and in ways that are most meaningful to them, even if their choices differ from how clinicians believe memories should be made (Fig. 37-4).69,70

TABLE 37-3 Creating Meaningful Memories

Photographs and Video
Both serve as touchstones to the family’s moments of interacting with their baby.
Photography Considerations

Photography Resources
Plaster Molds
Molds can be created of a baby’s hands and feet using a variety of products

Ink Prints and Other Memories
Prints can be created of baby’s hands and feet on the following:
Locks of Hair
Scrapbooking
Personal Items
Memory Boxes
Opportunities to Interact with the Baby

Care of the family during the dying process

IDT clinicians should ascertain how much information parents wish to know about what death may be like, including anticipated changes in the baby’s breathing, level of consciousness, color, and heart rate. Parents should be encouraged to be with their baby during death in ways that are meaningful and comfortable to them. Child life specialists and nurses may help prepare siblings for what they will see and experience before meeting their dying baby, keeping in mind that this is their first time actually seeing and interacting with their baby brother or sister.

Special cultural or religious actions, including proper care of the body, should be determined before the baby’s death, and implemented accordingly. A safe, private location should be established, providing families the opportunity to be with their baby’s body after death if desired. A time limit should not be imposed, as parental contact with their deceased baby’s body poses little risk for infection and also does not impact potential postmortem testing.71,72 In addition, IDT clinicians should ensure processes are in place should a mother hospitalized on a postpartum unit wish to be with her baby’s body again before discharge.73

Recognizing that many young parents have never before made arrangements for the care of a loved one’s body after death, IDT clinicians should be prepared to provide both verbal and written information on choosing a funeral director. An appropriate IDT member should be knowledgeable on the hospital’s process for release of remains, as well as local choices for burial or cremation. In addition, the options for autopsy and organ or tissue donation should be discussed with the parents as appropriate. IDT clinicians may choose to develop a process to notify staff members of a baby’s death, thus allowing staff who were not working at the time of the baby’s death the opportunity to say goodbye to their tiny patient.

Bereavement support

Grief support begins with the diagnosis of the life-limiting condition, and continues months after the baby’s death.2 Follow up with these families is essential. Parents’ recollections of events surrounding birth and death differ from reality, specifically concerning the infant’s condition at birth and the type of treatment that was given. The IDT can review the information with the family, even when there are no autopsy findings to review. The meeting should include IDT clinicians who can review the events around the death, provide recommendations for a subsequent pregnancy, and assess how the parents are working through their grief.

Parents face ongoing challenges when they are back in their community, where the infant’s death may not be known or the details misunderstood. When others do not know about the birth and death of the infant, they may approach the mother as if she is still pregnant, thereby creating an uncomfortable situation. Also, it is not uncommon for this type of a loss to be perceived as and called a miscarriage by the lay public. IDT clinicians can help families anticipate the heartbreaking task of returning home to a waiting nursery without their baby. Parents may appreciate the opportunity to consider how they will share the news of the baby’s death with their children, other family members, friends, colleagues, and strangers. A packet of supportive literature written specifically for parents experiencing the death of a baby should be provided before discharge from the hospital.

IDT clinicians should create avenues for bereavement follow up tailored to their particular population. Such follow up may occur through phone calls, bereavement mailings, hospital memorial services, or anniversary acknowledgments. Some parents may find comfort from a bereavement support group, or may access similar programs for their surviving children. A full discussion of prenatal and neonatal grief is outside the scope of this chapter. Readers are encouraged to access the following resources for further information:

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