KEY POINTS
- 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.
Introduction
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 ).
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.
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.
Pain
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.
| 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 | ||
| Extremities/ton | ||
| 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 |
| Crying | ||
| 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 |
| Calmness/agitation | ||
| 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 |
| Crying | ||
| 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 | ||
| Movement | ||
| Tone | ||
| 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 | ||
| Consolability | ||
| Bernese Pain Scale for Neonates (BPSN) | Alertness | 27–41 |
| Duration of crying | ||
| Time to calm | ||
| Skin color | ||
| Eyebrow bulge with eye squeeze | ||
| Posture/tone | ||
| Breathing patterns | ||
| CNS , Central nervous system. | ||
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