Palliative Care Family Support in Neonatology

Clinical Case Report

Cynthia is a 26-year-old woman from Mississippi who is pregnant with her third child. Cynthia and the child’s father are no longer together; the father of the baby is involved but lives in another city 45 minutes away. Cynthia currently lives in a small town and travels nearly 2 hours to the nearest tertiary care hospital for the majority of her medical care.

Cynthia arrives at her 20-week ultrasound appointment. During the ultrasound, Cynthia can tell something is wrong. Her worries are confirmed when she and her mother are unexpectedly asked to meet with a maternal-fetal medicine specialist after the ultrasound. Cynthia is heartbroken as she learns her baby, a boy, has multiple congenital malformations. Although the maternal-fetal medicine specialist states that additional testing is needed, she explains to Cynthia that she will likely have difficult decisions to make soon. The specialist predicts the fetus may survive until delivery, but it is unclear how long he may survive after birth. If he survives, the specialist worries he will never breathe on his own and will have severe delays in development. The specialist shares with Cynthia that there are multiple care pathways to consider at this time, but given the severity of the anomalies, she encourages Cynthia to think about termination of the pregnancy.

Cynthia is overcome with sadness and grief. Cynthia has a strong faith tradition and fears judgment for even considering termination of the pregnancy. She is torn because she also worries her child will not have the quality of life she would want for him. Cynthia is left feeling completely overwhelmed and is unsure how to proceed.

Epidemiology of Perinatal Death and Parent Outcomes

With advancements in perinatal medicine, perinatal mortality has steadily declined during the past several decades, although it has begun to plateau in more recent years. ^, In 2016, the perinatal mortality rate in the United States was 6.0 deaths per 1000 live births. Although there have been overall declines in perinatal mortality rates, a large disparity remains in outcomes related to race and geography. The mortality rate of infants born to non-Hispanic Black women is more than twice that of non-Hispanic White women, and the southern states of Mississippi and Alabama have consistently had worse outcomes than the rest of the country.

It is important to recognize that perinatal loss is a traumatic event with long-lasting parental effects. Gold et al. found that after a perinatal loss, bereaved mothers had four times higher odds of depressive symptoms and seven times higher odds of posttraumatic stress disorder symptoms. Although no differences in symptom levels were noted among races, disparities in treatment were noted. African American mothers who screened positive for posttraumatic stress disorder or depression were much less likely to receive treatment. Perinatal loss also affects the marital dyad. Couples who had stillbirths were at higher risk of dissolution of their relationship in the decade following the death compared with those who did not have a fetal loss.

In 2017, congenital malformations were the most common cause of infant mortality in the United States. Many advancements in perinatal medicine have led to earlier and more accurate fetal diagnoses. Although these early forms of screening can provide families and clinicians with beneficial information regarding the health of the mother and fetus, parents are often not prepared for a potentially life-threatening or life-limiting diagnosis for their child.

Role of Perinatal Palliative Care

Parents who have received news of a life-limiting or life-threatening fetal diagnosis describe “grieving multiple losses,” including the loss of their healthy baby, the loss of a normal pregnancy, and the loss of future parenting. After the diagnosis of a life-limiting or life-threatening fetal diagnosis, the American College of Obstetricians and Gynecologists committee on ethics and the American Academy of Pediatrics committee on bioethics recommend that the “full range of options, including fetal intervention, postnatal therapy, palliative care or pregnancy termination” be discussed with families. Early PPC, introduced at the time of diagnosis, may help develop a trusting relationship and can guide decision-making and support parental needs during this complex time. PPC brings the interdisciplinary approach into the prenatal period and the immediate postnatal period (see Fig. 91.1 ). An interdisciplinary approach is vital to palliative care principles and should be integrated throughout the care of the patient and family. ^, For example, social workers often work with the PPC team to identify financial or counseling resources, child life specialists can assist with preparing siblings for the birth and possibly death of a newborn, and lactation specialists may assist the mothers with either weaning off of breast milk or donating their breast milk.

Spiritual and Cultural Considerations

A family’s spiritual needs and wishes should be considered at all points in care. Parents may struggle with existential questions after the diagnosis of a life-limiting condition. In a study evaluating values applied to parental decision-making in delivery room resuscitations, family decision-making was largely steered by religion, spirituality, and hope as opposed to the medical information presented. Wishes for spiritual or cultural rituals should be coordinated whenever possible. The care team should be aware of any culture-specific customs or practices and honor them whenever able. ^,

Communication

After news of a life-limiting or life-threatening diagnosis, parents are often forced to make difficult and often time-sensitive decisions regarding multiple aspects of care for their child. Communication and information delivery during this prenatal time is crucial. In a study of 19 families given the prenatal diagnosis of trisomy 18, the majority of parents felt they were not appropriately informed about the potential diagnosis during the screening process and believed ultrasound findings were poorly communicated. From the same study, empathic communication was found to be essential in parents’ overall satisfaction with care. It is important to recognize that a family’s communication needs may vary. Whereas some families may choose to seek out additional information regarding the diagnosis, others may avoid it as a method of coping. Dialogue with parents about their preferred communication styles and approach to receiving information is important in making sure parental needs are being met.

Prenatal consultation with neonatologists provides parents with the opportunity to discuss care and talk through decisions specific to their child and family. Miquel-Verges et al. conducted interviews with 22 women after a diagnosis of congenital anomalies and discovered parents valued five major themes in prenatal consultation. Parents valued the opportunity to feel prepared, have a knowledgeable physician, have a caring physician, have the opportunity to allow hope, and spend time with the physician. Parents also felt touring the NICU beforehand equipped them with additional knowledge and helped them feel more prepared for a transition to NICU care.

Prenatal Decisions: Termination, Imaging, Monitoring

After a discussion of possible options, some parents face the difficult decision of continuation or termination of the pregnancy. In a study by Breeze et al., the median time for parents to decide on termination or continuation of pregnancy was 1.5 days (range, 0–8 days), illustrating the urgent nature in which this decision must sometimes be made. Parents’ decision to continue or terminate a pregnancy may be multifactorial. In a study by Guon et al. of 332 parents who chose continuation of pregnancy in the setting of a trisomy 13 or trisomy 18 diagnosis, themes of moral beliefs and child-centered reasons such as love for their child, the value of their child, and uncertain outcomes affected their decision to continue the pregnancy. Families who choose continuation of pregnancy often hear messaging to terminate the pregnancy or face feeling unsupported by their medical team.

Ongoing maternal and fetal care, including potential interventions and monitoring, should be discussed and individualized to facilitate plans matching parental goals. Offering families routine fetal surveillance may provide reassurance and add a sense of normalcy to the pregnancy. Routine surveillance and standardized testing such as ultrasounds can also promote memory-making and bonding. In a qualitative study, seven parents were interviewed who received life-threatening fetal diagnoses, and all parents expressed their desire to hear the fetal heartbeat and see ultrasound images as a chance to “get to know their baby.”

Delivery Decisions: Location, Mode, and Infant Care

Parental preferences surrounding intrapartum care should be discussed in conjunction with the obstetrician and neonatologist or pediatrician (see Fig. 91.2 ). Parents who reported struggling for control over prenatal and delivery options were reported to have lower levels of satisfaction with care. The location of delivery is one component that should be reviewed. Based on parental goals, some families may choose to deliver within their community to be closer to home and familiar supports. Some families may plan for delivery in a larger, tertiary care center with additional access to neonatology and potential life-sustaining measures. The mode of delivery is another key component to be evaluated. Although vaginal delivery has been previously considered the recommended mode of delivery in the setting of a lethal diagnosis, a cesarean section may be considered in some situations. Women may request a cesarean section with the goal of delivering a live infant. ^, Parents were noted to be dissatisfied with care in situations where physicians declined to perform a cesarean section when requested at the time of delivery.

Reviewing steps of resuscitation with the family and determining how these potential actions and interventions fit with their goals should be completed prenatally whenever possible. For families planning on a focus on comfort after delivery, it is important to discuss anticipated symptom management needs. ^, Plans for memory-making activities such as photographs, hand and foot prints, and molds may also be coordinated prior to delivery when possible. Communication of intrapartum plans should be shared with all members of the care team who may participate in the delivery and provide ongoing care to ensure parental wishes are met.

Ongoing Decisions: The Unexpected and the Uncertain

Recognizing the limitations of prognostication that remain despite technological advancements, preparing families for unexpected outcomes is an important step ( Table 91.1 ). Introducing families to potential decisional points they may face in the future allows parents the opportunity to consider these complex choices in a more controlled setting. This may include reviewing potential ongoing interventions or familial wishes for discharge with hospice support if feasible. ^, Diagnosis of a life-limiting or life-threatening prenatal diagnosis forces parents to make complex and often unexpected choices regarding the care of their child. Palliative care provides longitudinal and interdisciplinary support to families and individualized guidance centered on goals of care throughout the decision-making process. ^{, , , ,}