Progression of Palliative Care to the Youngest Patients and Their Families: Perinatal and Neonatal Palliative Care

The childbearing period is a time typically associated with hope and expectations for a healthy baby born full term; however, the increasingly widespread use of prenatal technologies assessing the health of the developing fetus has resulted in an increasing number of pregnant women faced with diagnoses of a fetal defect, the meaning or prognosis of which may be unclear until after the infant’s birth. Although the absolute number of congenital defects has not increased, the prenatal diagnosis of fetal defects has increased, meaning that some pregnant women and their families face the difficult prospect of choosing whether to continue the pregnancy and, if they choose to continue, planning for the birth and uncertain outcome for their newborn.

Complex issues surround prenatal diagnoses, decisions regarding treatment in the presence of severe or life-limiting fetal defects, and care of women and families in these difficult circumstances. PPC offers a means to assist these families in significant ways and has been endorsed by a variety of professional groups and stakeholders. In 2019, the American College of Obstetricians and Gynecologists (ACOG) Committee on Obstetric Practice and Committee on Ethics published an opinion on perinatal palliative care which was endorsed by The American Academy of Pediatrics and the Society for Maternal-Fetal Medicine.¹⁰ In this publication they expanded women’s right to choose by presenting the need for providers to give patients faced with a LLFC information about palliative care, of “sufficient depth and breadth to make an informed voluntary choice.”^10(p84) The ACOG committees noted specifically that “perinatal palliative comfort care is one of several options along a spectrum of care, which includes pregnancy termination (abortion) and full neonatal resuscitation and treatment.”^10(p84) For women who choose to terminate, bereavement support may be beneficial. Women should be informed that, depending on the nature of the termination, some bereavement interventions—infant remembrance photography, for example—will not be possible.

In 2015, the National Association of Neonatal Nurses (NANN) published a position statement on palliative and end-of-life care for newborns and infants in which they affirmed that palliative and end-of-life care are integral to neonatal care and that neonatal nurses should be trained to provide essential services and assist families in setting goals of care.¹¹ The introduction to the statement affirms the concurrent use of palliative care and curative treatments, emphasizing the importance of ongoing assessment in order to recognize when it is necessary to shift goals of care to comfort rather than cure. This point of emphasis underscores the need for neonatal nurses to be exceptionally skilled in providing care across a wide range of conditions affecting infants admitted to the NICU and their families—from those otherwise healthy infants needing a few days of supportive care before discharge home to those for whom limitations of gestational age, congenital conditions, or birth trauma limits their lives to hours or days.

In 2017, the American Academy of Nursing (AAN) published a policy brief in which it made six recommendations regarding PPC as a collaborative effort across several disciplines: (a) development of effective models of PPC providing for ongoing communication with the pregnant woman and family when the fetus has a life-limiting condition; (b) allocation of adequate resources by healthcare organizations to ensure adequate training of PPC team members; (c) congressional mandate for funding of PPC advance care planning services and evaluation of quality; (d) recognition of nurses as key members in the PPC team, including as care coordinator and advanced practitioner across care settings; (e) PPC credentialing mechanism; and (f) increasing public awareness of the role of PPC using a variety of media.¹² As a newer form of palliative care, PPC has yet to become widely and consistently implemented; however, application of these policies has potential to advance the mission of PPC providers to implement comprehensive, supportive care to women and families for whom pregnancy is likely to end in fetal or neonatal death.

PPC, the importance of which is increasingly being recognized, is then distinct in its focus on emotional, social, and functional support of pregnant women and their families and is provided by a team of providers across various disciplines. These may include maternal–fetal medicine physicians, who typically make and convey the diagnosis and follow fetal development over the course of the pregnancy and often are the primary maternity care provider for the pregnant woman. Neonatologists or pediatricians are often part of the PPC team, or at a minimum consult with the family in advance of birth to discuss potential management and care of the neonate, and consultations with genetic counselors and medical and surgical specialists are not uncommon. Depending on the composition of the PPC team, social workers, RNs in the prenatal clinic and in the birthing suite, childbirth educators, and lactation consultants may be involved in the care of the families. Some PPC teams include pastoral care and child life specialists.

Functional support occurs in the form of birth planning and contingencies related to the outcome of the pregnancy. Because prognostication related to fetal and neonatal outcomes can be difficult, answers to questions of “What is going to happen?” may be vague or simply “We don’t know.” The lack of certainty accompanying the diagnosis of an LLFC heightens parents’ vulnerability, which is typically coupled with worry and anxiety throughout the remainder of the pregnancy. Effective PPC requires providers to be skilled in assessing family responses to the diagnosis, prognosis, and potential range of outcomes and to provide anticipatory guidance throughout the pregnancy trajectory. PPC serves uniquely as a bridge from pregnancy to parenthood, and from fetus to newborn.

NPC and PPC overlap in the immediate aftermath of a live birth. Although for some parents the answer to “What is going to happen?” is stillbirth or neonatal death soon after birth, for others the infant might remain with the family while the mother is hospitalized or until discharge. Still other parents’ infants might require supportive care in the NICU to ensure his or her comfort or for intensive life-support measures. PPC typically includes care of the mother and family at the time of birth, including comfort care of the live-born infant expected to die soon after birth. Most PPC teams work to keep dying newborns with their mothers and family members as long as the parents desire, and their care is administered by RNs in the birthing suite, many of whom have training in bereavement support.

The need for NPC is not always anticipated. Sometimes infants born with congenital, life-limiting conditions live beyond their expected short life span, surviving to be discharged home with their families after supportive care in the hospital. Some pregnancies end unexpectedly in the presence of maternal complications requiring obstetric intervention or when a woman goes into labor prematurely, giving birth to a neonate on the edge of viability. For others, congenital defects or metabolic disorders may have been undetected prenatally, or maternal trauma or obstetric accidents such as umbilical cord prolapse may result in conditions necessitating the use of both intensive care services and palliative care focusing on preparation for the end of life in the event of an irreversible injury or untreatable condition.

No longer an either/or choice of curative treatment or palliative care, NPC current best practices suggest concurrent curative treatments and palliative care as the gold standard. Because palliative care encompasses symptom management, its early adoption for fragile infants facing a long recovery and potential developmental challenges introduces families to its benefits for their child. Moreover, once an infant is discharged home, the family may benefit from community-based pediatric palliative care services. If the infant has a life-limiting condition, palliative care provided in the home by expert healthcare providers can prepare a family for the use of hospice services when the infant’s health declines. Unfortunately, community-based neonatal and pediatric palliative care services are not uniformly available across the United States. Thus, care for an infant at home with a life-limiting condition can pose a challenge to families and their local providers in the absence of adequate professional palliative and end-of-life support.

Define Terms

Conceptual clarity is important for ensuring that healthcare professionals, researchers, and other stakeholders define and interpret phrases and terms in a similar manner. As such, Table 1.1 presents a glossary of common palliative care terms and their definitions.

Preparing Providers: Educational Initiatives to Improve Practice in Perinatal and Neonatal Palliative Care

Nurses, physicians, and others working in perinatal settings such as prenatal clinics, birth suites, and postpartum units may have chosen these settings for the typically good outcomes of a healthy baby born at term to a healthy mother. Poor outcomes are difficult and painful reminders that death occurs anywhere across the life span. Providers in NICUs may be more accustomed to dying and death because of the nature of the population admitted to those units; however, being accustomed to these difficult situations does not mean that one is necessarily well-prepared to meet the challenges posed when an infant dies.

For a long time, nurses in labor and birth settings have participated in what have become routine acts associated with stillbirth, including taking photos, saving locks of hair, armbands, foot prints, and other memorabilia associated with the baby’s birth. These kind and well-meaning actions in fact are important: They are efforts to ritualize and make meaning of the short moments a family has with their child. Furthermore—even if inadvertently—these actions are consistent with the continuing bonds theory, which describes bereaved persons maintaining bonds of attachment even after the death of their loved one. Although describing various grief and bereavement theories is beyond the purpose of this chapter, we mention this as an example of an intervention well-entrenched in current maternity care practices and with a sound theoretical basis. Many maternity units have had for decades a mentor/mentee model of bereavement care, in which practices are handed down from experienced to novice nurses. As formal educational initiatives have expanded, providers have become increasingly knowledgeable about loss, grief, and bereavement, with an improved understanding of the complexities of loss in perinatal and neonatal settings. Providers in childbirth settings are now better positioned to implement effective care for families suffering these losses and their aftermath.

Dying in America includes a section on professional education and development in which the committee notes that, although education for providers has improved since the first report was published, “serious problems remain.”^8(p13) These problems are twofold: (a) improved education has not been fully applied to clinical settings and (b) the number of end-of-life and palliative care specialists is inadequate to the need, such that clinicians in primary settings and other specialties (e.g., cardiology and oncology) continue to provide much of the care for patients approaching the end of life.⁸ These shortcomings are a function of three patterns of clinical education: (a) absence of hospice and palliative care in medical and nursing curricula; (b) single-profession educational silos, especially troublesome because end-of-life and palliative care are interdisciplinary fields; and (c) continuing lack of education, especially among physicians, regarding effective communication with patients and families in this population.⁸

Recognizing that most healthcare providers reading this chapter will be products of the educational system the IOM described as problematic, we will present ways in which clinicians can enhance their practice through education in order to provide quality, evidence-based care for patients in perinatal and neonatal settings. We begin by describing the most general education related to death and dying, end of life, and palliative care.

Maintaining Quality Practice: Benefits of Ongoing Education

Ongoing education among healthcare providers is a professional responsibility regardless of practice setting. Providers typically think of ongoing education in terms of continuing education, that is, learning activities related to one’s profession providing continuing education units (CEUs) for participation. Although requirements for continuing education and accrual of CEUs vary across healthcare disciplines and state regulatory boards, providers committed to excellence in practice engage in ongoing continuing education beyond the minimum standards set forth by their profession and regulatory boards. Furthermore, continuing education equips providers with evidence-based tools for practice.

Evidence-based practice is a three-pronged approach to clinical care that is broader than simply the awareness of scientific evidence in the extant and developing literature, although that is crucial. Provider expertise and patient preference are the other two sometimes-overlooked prongs of evidence-based practice. Clinical expertise is enhanced through ongoing education, providing exposure to new thinking and developments in one’s field. Patient preference, although sometimes easy to discern, may be less obvious when patients and/or families are highly vulnerable, such as those times when expectant or new parents encounter the prospect of early death of their child. It is at this point that well-developed communication skills are extremely valuable in assisting families to determine what they prefer and to implement a tailored yet flexible plan of care accordingly. Ongoing education is a means of shaping all three prongs of evidence-based practice in order to ensure quality care.

A clinical staff that values and participates in ongoing education benefits not only patients (the first priority) but also the healthcare organization. Quality care rendered expertly has the best chance for good outcomes. Educational offerings often identify and address potential barriers to implementation of new models of care. Providers have opportunities to recognize organization-specific barriers and to create strategies to manage them. Comprehensive palliative care education also includes how to measure baseline and outcome metrics. The current trend of linking reimbursement to outcomes or value-based care means that it is in the best interest of the healthcare organization to support clinical staff development through ongoing education to maximize clinical skills and optimize outcomes. Success of any program rests on the ability of health professionals to demonstrate results meaningful to themselves, patients, and administrators. Data are necessary to monitor patient outcomes and program impact, as well as to facilitate ongoing quality improvement processes.

In addition to these benefits, organizational support of ongoing education creates a work environment with potential for efficiency and increased productivity and is thus an investment in both the clinical staff and the organization itself. Well-run organizations tend to retain employees, which reduces costs. Importantly, an administration that values ongoing education for its clinical staff means that administration values clinicians’ work and professional development and can promote shared purpose and mission. Support for ongoing clinical education then becomes a win-win-win situation across three important stakeholders: patients, providers, and administrators.