Pain and Symptom Management in Newborns Receiving Palliative and End-of-Life Care


  • 1.

    Perinatal palliative care is specialized medical care for fetuses/infants with life-threatening or terminal conditions, with the goal of providing equitable and effective support for curative, life-prolonging, and palliative care for patients and their families.

  • 2.

    Perinatal hospice may include care of infants diagnosed with a serious medical condition in a physical inpatient setting or at home.

  • 3.

    Perinatal palliative care is a difficult situation for both families and care providers and needs inputs from multiple disciplines such as perinatal hospice nurses, social workers, chaplains, child life specialists, or others who can assist with birth plans, counseling, sibling support, and preparation for end-of-life care.

  • 4.

    The scope of perinatal palliative care services may include (1) primary care offered within any community, for lethal conditions such as anencephaly; (2) secondary care, for conditions with diagnostic ambiguity or prognostic uncertainty and rare disorders with which medical services and the community are uncomfortable (examples may include trisomy 18 and complex congenital cardiac defects), and (3) tertiary care, which includes more complex situations that may require fetal interventions and trials of therapies.


The provision of end-of-life (EOL) palliative care to critically ill fetuses or newborn infants is difficult for both the families and the care providers. In many infants, the need for EOL care may arise suddenly, following a catastrophic change in condition or following a complication. In extremely premature infants with a difficult clinical course, the transition to palliative care may be gradual as more organ-specific complications are recognized. In these two groups, bereavement is a distinct phase. The situation may be more complex in a third group, who may have short phases of curing and healing that bring joy, such as infants with difficult-to-treat genetic conditions, but these phases may be mixed with periods when the baseline diagnosis again becomes prominent and brings resignation ( Fig. 90.1 ). In other lines of thinking, the temporal course has been considered to be primary variable ( Fig. 90.2 ). There has also been some recognition of the epochs of EOL care ( Fig. 90.3 ).

Fig. 90.1

Various Models for Providing Palliative Care .

(Reproduced after modifications from Cortezzo and Carter. Palliative care. Avery’s Diseases of the Newborn , 35, 446–452.e2.)

Fig. 90.2

Death Trajectories in Neonatal Intensive Care Units .

Although losing a baby is always a tragedy, death can follow several different trajectories: (A) sudden, unexpected death, (B) death from a lethal congenital anomaly, (C) death from a potentially curable disease, and (D) death from chronic, terminal disease.

(Reproduced after modifications from Basu RK. End-of-life care in pediatrics. Pediatr Clin N Am. 2013;60:725–739.)

Fig. 90.3

Epochs of End-of-Life Care Can Change Care Delivery .

In the intensive care unit, treatment goals do not easily fit a linear construct (A) where treatment goals fit into distinct “epochs.” A more realistic and appropriate care construct is blended (B), where treatment directed at cure and supportive care are intertwined throughout the entire period of a child’s dying process.

(Reproduced after modifications from Basu RK. End-of-life care in pediatrics. Pediatr Clin N Am. 2013;60:725–739.)

One of the primary goals of EOL care is controlling distressing symptoms. Both clinician and parental perception of adequate control of symptoms including pain, agitation, and air hunger is a central component of the EOL experience. However, the newborn patient population poses unique challenges to symptom palliation, because infants are nonverbal and symptoms may present differently than in older patients ( Fig. 90.4 ). There is limited research in the assessment of many symptoms, such as delirium and air hunger, whereas other symptoms, such as pain, have a multitude of measures. Numerous pain scales exist, and most use both a physiologic and a behavioral assessment that might be characterized as subjective. For other symptoms, the lack of widely accepted and validated assessment measures may cause clinicians to be less confident or aggressive in their management of symptoms such as agitation, delirium, or air hunger. However, professionals in the healing arts have an ethical and moral responsibility to alleviate suffering. Hence, despite these challenges, it remains the responsibility of the treatment team to minimize, and to alleviate as much as possible, neonatal patient suffering. This chapter will present interventions, both pharmacologic and nonpharmacologic, that can optimize comfort during the EOL period.

Fig. 90.4

Palliative Care Encompasses the Entire Duration of the Dying Process .

Palliative care should start early if needed. If disease progresses and the focus of medical treatment needs to shift, the goals of palliative care should be directed toward comforting the infants and family. The care needs to continue after death.

(Reproduced after modifications from Basu RK. End-of-life care in pediatrics. Pediatr Clin N Am. 2013; 60:725–739.)

Although many of these therapies have overlapping indications for curative interventions, the focus of this chapter will be to outline management of the symptoms frequently experienced by infants in the EOL period. As with most comfort-focused care plans, all interventions should be considered in the context of the family’s goals and wishes for the child.


Aggressive treatment of pain in the dying neonate may make some caregivers uncomfortable. Given the multitude of modalities to address pain, leaving it untreated is ethically indefensible, especially in the EOL setting. Historically, there were incorrect or incomplete understandings of how newborns experienced of pain. It was not until the 1980s that the medical field had a major paradigm shift to acknowledge and subsequently treat neonatal pain. Despite the now well-accepted understanding of neonatal pain, there remain concerns that pain is still inconsistently treated, including in the EOL period. Contributing to this inconsistent treatment or undertreatment of pain at the EOL may be a concern that achieving adequate pain control may hasten death. However, evidence demonstrates that infants with adequate pain control live longer than do those with uncontrolled pain and agitation. Additionally, there is evidence that exposure to analgesic and anxiolytic medications in infants who die in intensive care units has increased significantly during the past 15 years. Treatment of pain is a vital component of a palliative care plan.

The first step in achieving adequate pain control is determining how to assess pain. Recent studies evaluating pain scales in the neonatal palliative care population found that there is not sufficient evidence to conclude that one scale is superior to others. , The importance of using the same scale consistently, with frequent assessment and documentation, has been well described. Tables 90.1 and 90.2 are compiled from numerous published references that outline pain assessment tools for neonates.

Table 90.1

Common Pain Assessment Tools Used in Neonates

Assessment Tool Indicators Gestational Age (wk)
Neonatal Facial Coding System (NFCS) Brow lowering 24–32
Eye squeeze
Nasolabial furrowing
Lip opening
Vertical mouth stretch
Horizontal mouth stretch
Taut tongue
Chin quiver
Lip pursing
Premature Infant Pain Profile (PIPP) Gestational age 28–40
Behavioral state
Maximum heart rate
Percentage decrease in O 2 saturation
Brow bulge
Eye squeeze
Nasolabial furrowing
Neonatal Pain Agitation and Sedation Scale (NPASS) Crying 23–40
Behavioral state
Facial expressions
Vital signs
Behavioral Indicators of Infant Pain (BIIP) Behavioral state 24–32
Facial expressions
Hand movements
Douleur Aiguë du Nouveau-né (DAN) Facial movements 24–41
Limb movements
Vocal expressions
Premature Infant Pain Profile-Revised (PIPP-R) Maximum heart rate 25–40
Percentage decrease in O 2 sat
Brow bulge
Eye squeeze
Nasolabial furrowing
Gestational age and behavioral state
Faceless Acute Neonatal Pain Scale (FANS) Change in heart rate 30–35
Bradycardia, desaturation (acute discomfort)
Limb movements
Vocal expressions
Neonatal Infant Pain Scale (NIPS) Facial expressions 26–47
Breathing patterns
Arm movements
Leg movements
State of arousal
Crying Requires Increased Oxygen Administration, Increased Vital Signs, Expression, Sleeplessness (CRIES) Crying 32–60
Fi o 2 requirement
Increased blood pressure and heart rate
Facial expressions
Sleep state
COMFORTneo Alertness 24.6–42.6
Respiratory response (ventilated patients)
Crying (spontaneously breathing patients)
Body movement
Facial tension
Body muscle tone
COVERS Neonatal Pain Scale Crying 27–40
Fi o 2 requirement
Vital signs
Facial expressions
Resting state
Body movement
Pain Assessment in Neonates (PAIN) Crying 26–47
Breathing patterns
Extremity movement
State of arousal
Fi o 2 requirement
Increase in heart rate
Pain Assessment Tool (PAT) Posture/tone 27–40
Sleep pattern
Facial expressions
Heart rate
O 2 saturation
Blood pressure
Nurse perception
Scale for Use in Newborns (SUN) CNS state 24–40
Breathing patterns
Facial expressions
Heart rate
Blood pressure
Echelle Douleur Inconfort Nouveau-né (EDIN) Facial activity 25–36
Body movement
Quality of sleep
Quality of contact with nurses
Bernese Pain Scale for Neonates (BPSN) Alertness 27–41
Duration of crying
Time to calm
Skin color
Eyebrow bulge with eye squeeze
Breathing patterns
CNS , Central nervous system.

Only gold members can continue reading. Log In or Register to continue

Stay updated, free articles. Join our Telegram channel

Sep 9, 2023 | Posted by in PEDIATRICS | Comments Off on Pain and Symptom Management in Newborns Receiving Palliative and End-of-Life Care

Full access? Get Clinical Tree

Get Clinical Tree app for offline access